Read SJS/TEN Stories, Page-23

Name :: mary guillen Email_address :: mguillen5534@esagelink.com

Story :: hi my name is mary and i have a seven year old daughter that was dianos with stevens johnson sydome when she was two 1/2 years old. she was taking some medicine for her seizures the seizure medcation she was on was called lamictal. it was the thirty first of december of 01, going into the new year of 2002 when all of this started. i took my daughter sierra to see her doctor it was new years eve because she was running a fever and complaining with her ears and also she had a rash of some sort then her doctor told me it was yeast sierra's doctor called the rash yeast and he gave me a prescription for sierra he put her on amoxillan for her ear infection and also he gave me a prescription for her yeast infection i was thinking to myself how can you get yeast all over your body. then the day went on and sierra was getting worse her rash was speading all over her body she had blisters all over her lips and body so i finally called her grandma to come and look at her she told me it looks like she as chicken pox and she was running a high fever so we take her to the hospital at children's mercey hospital here in kansas city kansas missouri once we got there they put her in another room away from the other patience because they thought she also had the chicken pox. we was only in the room for a little while and sierra had a seizure and then they started admitting her into the hospital because they didn't know what was going on with my little girl so i called her father and i told them what they were doing and also i had her brother to he was only seven months old when this happened to sierra. so they admitted her and took her to the third floor of the hospital they didn't even know what was going on with her they drawed some blood from her because they thought the blisters was herpies now can you tell me how a two 1/2 year old is going to het herpies man come on get with the program i mean really that night was long when she had to go to the bathroom she would praclley jump off the bed because it hurt her when she went to the bathroom and she was in alot of pain because all of the blisters all they would give her was motrion for the pain that whole night we went through with her we didn't even know what was going on with our daughter so finalley i got fed up and went and talk to the nurse and ask her what was they going to do for my besides give her motrion for the main i wasn't com i was agry and crying and begging for them to do something for my daughter and finalley they were going to give her something better for the pain and then she started having breathing problems and they called down to the picu to let them know that she was having breathing problems and they came and looked at her and one of the doctors from the picu told me and my husband that sierra had stevens johnson sydome and they took her down to the icu and put her out on a breathing machine . sierra was on the breathing machine from january 1,2002 too january 19' 2002 man those days were long when you didn't know if you were ever going to get to take your baby back home or not and they say this is rare this is not rare this is happenning all over the united state and other countrys how many more of us is it going to take for them to dianois this early enough to catch it before it gets bad like it did with my daughter. sierra is going to be eight her birthday in august i have been dealing with this since she has been 2 1/2 years old my daughter has had salva glad transplants to both eyes to make tears but i am still having to put oiment in her left eye because the left isn't doing as good as the right eye the salva glad transplant took good in her right eye she has alot of tear fuction in it i had to put her back in the hospital back in march of 2002 due to a cornea ulcer to her left eye so yes my little girl has been through alot and still going through alot buy the way she got to come home february 5th of 2002 and the we had to turn around and put her back in the hospital of march of 2002 because of the ulcer in her left eye my daughters eyes are scared in both eye she has low vision and she goes to the state school for the blind here in kansas city kansas. this little girl has been through alot and i am glad that i can share her story with you and hope to her from you soon.

sierra and mary guillen. email address is mguillen5534@esagelink.com our address for our house is 151 north 78thst so feel free and wright us we would be more and happy to help if we can .

Name :: teresa stephens Email_address :: teresa4210@earthlink.net

Story :: My husband who is 60 yrs. old had a sinus infection and was treated with a sulfa product which was baxtrum(not sure if spelled right). He took the whole dose for 10 days. The last dose which was on a Sat. he was feeling a scrathy throat, and yes he does smoke cigerates. On Sat. night he was running a fever of 101.3, Sunday he still had a fever of 103.5 and lips were showing swelling and blisters, inside mouth few white patches,and feet were spotty with dark spots-hard for him to walk on. Come Mon. morning it got worse so I took him to the doctors office which he thought it was just a simple allergic reaction to the sulfa. Nothing else was said. Come Tues. it was even way worse then Mon. so then I called my friend who has been a nurse for 15 yrs and I told her my husbands problems and the first thing she said to me was "he has Stevens Johnson Syndrome." She told me to call the doctors office and tell them to get a prescription of Lidocaine Viscous. I did, I told them what my friend said he had and the only thing said by the doctor was take him to the emergency room. So he spent 2 days in the hospital and today is a new week-Mon and my husband is slowly healing and is able to eat some solid foods instead of liquids only. We thank the Good Lord he was not as bad as the pictures we had seen on this web site but I do pray for others who have had this that they will have the strengh to get better. If anyone out there reads this I am more than willing to support others and tell you more about my husbands SJS outcome. God Bless Everyone.

Name :: Peter Waddington Email_address :: infilkoi@aol.com

Story :: I live in Bury, Lancashire in the UK. Some weeks ago I called into my local pub on the way back from work as I usually do and have a chat with the locals who go in. A regular came in sporting a huge lump under one eye with a black center - his name is Darren and I asked if he'd been fighting as the lump looked angry - he said he had not been fighting and did not know what had caused it - he said it had just come up suddenly.
Some days later, he told me afterwards, that the skin on his neck, shoulders, hands and feet came up in blisters which irritated him. After a further day they began to get worse and his partner Debbie became concerned that it might be blood poisoning or an insect bite and insisted she take him to the local hospital's accident and emergency department.
The A & E department examined Darren but could come up with no diagnosis but hinted it could be serious - in view of this they asked Debbie to take him immediately to the main hospital in Blackburn some miles away.
On arrival at the hospital Darren was admitted immediately but the staff could not come up with a diagnosis so they put Darren in an isolation ward on a drip of antibiotics. When Debbie returned the next day she noted that the blisters had increased and were larger and that Darren's condition had become worse. The staff at the hospital took photographs of Darren and sent them to various hospitals to get opinions as to the problem.
It came back some days later that Darren was suffering with Stevens Johnson Syndrome and it was recommended that the antibiotics should be stopped immediately and steroids used instead. Within a day or so, Daren began to recover and the blisters began to decrease in size after which he was discharged from hospital and returned home to complete the course of steroids.
Darren told me the name of the disease and I checked it out on the Internet and came up with this site. On reading the horror stories on the site Darren appears to have been lucky insomuch as he had no blisters on his torso and none inside his mouth and throat but one eye was almost closed shut - he also had not been taking any tablets to bring on the condition but certainly the antibiotics given in error escalated the seriousness of his condition.
I saw Darren yesterday and the huge lump under his eye had almost gone and the blisters had decreased to red, flat blotches around his neck and shoulders. Upon reading the stories on this site I must conclude that Darren has had a very lucky escape!
Once again, Daren had not been taking any medications to bring on the disease so I wonder what could have brought it on so suddenly?

Name :: Shelby Wallis

Story :: Hi I'm Shelby. I had case of SJS.
It all started on the trip home from a family vecation, i told my Dad that i was not feeling well and i went to lay down in the back of the truck. I had a big headache and i was getting kind of dizzy. We got home and I still was not feeling to good. I stayed home from school. Finally Dad and I went to the doctor complaining of the same headache, a backache, vomiting, and a sore throat. The doctor said that i should stay home for the next day so that she could get my blood work in from the hospital. When she got the blood work in that Tuesday everything was alright and she said that it might just be a virus moving through my body. She gave me some medicine and sent me home.
On Wednesday morning around 3AM i woke up itching. I thought that a nat or something was just on me, but i went and checked in the mirror anyway. It was not a NAT! i was red and the rash covered me from head to toe. I ran down to Dads room and told him all about what i had experienced and i even showed him the rash. He told me to go back to bed and we would see how it was in the morning. It was not any better. We went to the doctors office and she immediatley to me that i should go and check into the hospital. I stayed in the hospital for 3 days and then the Doctor said that i could go home and the rash would clear.
As i am typing this story i still have the rash, i just barely got out of the hospital today and have been on steroids to help heal. I will further this story after i find out what happens. I am 13 years old an I have SJS.

Name :: Justice Miss Priss Email_address :: marycreameans@yahoo.com

Story :: My niece Our Little Miss Priss was 5 years old she was air vaced out of poplar bluff to st louis with sjs. Once she arrived at St Louis SJS was the what she was suffering from whitch was caused from MOTRIN!!!!!!!! they continued to give that to her still. untill she was put into a sleep induced coma then the doctors keeped saying she should have a 100% recovery!!!! every day that i went in her room rather if it was every hour or every 2 hours she keeped looking worse this persist for 9 days and 8 nights with the doctors saying that she had hit her peek and she was on the road to recovery!!!! well that never happened on july 30 2006 at 8:00 am in the morning she coded and passed away it was the hardest thing in my life and still is it does not get any easier. Getting told every day that shes going to be fine from the doctors and then her passing away I watched or little girl look so missorable and then shes gone and then getting told by the doctors theres nohing eles we can do. i want to this story to be heard because for my niece i have turned sjs into someone justice saved. so for the memory of JUSTICS EVELYN BLISS BRAKEFIED maybe someone or maybe even a parent or another aunt will read this and will help me and justice get the word out that Motrin OR the genric Ibebrofen KILLS my niece is proof!!!! thanks for reading my story and please pass it on for the sake of MY neice JUSTICE OUR MISS PRISS forever in my heart. aunt mary

Name :: Dale Gustafson Email_address :: riseandshine946@hotmail.com

Story :: I reacted to amoxycillin with an outbreak of TEN in 1999, and about seven times was sent home by the local medical facilities without getting proper treatment, as no one knew what I had. My wife was told it may a laundry detergent reaction, and was instructed to stop using it. No medications were prescribed to me. For several weeks I went in and out of urgent care, at one time being dehydrated to the point that they had a hard time finding a vein to insert a needle. I begged for relief, having slept only a few hours in these weeks of hell. My skin, from scalp to foot, would shed, I'd grow more blistered skin, and again it would shed. By my own choosing I finally saw an allergist, who diagnosed me with SJS. He finally started treating me with high doses of prednisone. At no time, however, was I made aware that there is a fatality rate associated with SJS, or any other possibility of blindness, etc. During my misery I could easily have succumbed to suicide, my suffering was so great. I've since recovered, and in all these years since, when I mention it during a medical exam or fill out the pre-visit forms, not but perhaps one doctor has even heard of SJS. I'm happy to find that there is a support group dedicated to SJS.

Name :: michele jaso

Story :: When my oldest son, Josh was 4 years old he came down with a rash. First they called it chickenpox, then measles, then then admitted that they didn't know what it was. Since his twin brotherand sister were in the NICU at CHOC I insisted he be transferred there. I did not expect it when he was admitted to PICU. However, as his skin developed giant blisters and pealed off and the skin in his eyes and mouth came off , I realized we were in hell. I prayed constantly that God take me or one of the babies but not my precious son who kept crying out to me but there was nowhere I could touch him.
After fifteen days in ICU he was allowed to go home. He still has a lot of emtional issues 25 years later about the scars on his body.
We are still known as the family with the three kids in ICU. But thankfully we all survived.
Michele Jaso

Name :: Christina Kaufman Email_address :: chrissy3241974@yahoo.com

Story :: I have just finished watching the Montel Williams show. The show focused on updates from past guests. One of the guest update was about Julie. The story broke my heart.

In 1994 I went to my physician complaining of pain during urination. After a urine culture was completed, I was diagnosed with a UTI. My physician prescribed Bactruim, an antibiotic, for my infection. A day or so later I started with an odd rash. It was not on my skin but underneath it, it is very hard to describe. At first my mother thought I had an allergic reaction to an animal or flowers since I have allergies to both. The next morning I woke up and was covered head to toe in this rash. I am very fortunate. My mother has been a burn unit nurse for over 20 years. When she looked at the rash that morning, she recognized it right away and contacted the doctor. I was immediatly taken off the antibiotics. I was told my reaction was SJS. If it had been for my mother's expierence with the condition I may have written it off as just a rash. Since it was diagnosed quickly, I did not sustain any permanent injury. I am unable to take any medication containing Sulfa. I am also vigilant when it comes to reading lables and identify products containing sulfa, such as the OXY product line.

Julie's story broke my heart. As soon as I saw the pictures my eyes weld up with tears. Julie is a beautiful girl with a large heart. She has taken this life altering event and goes on national television to bring awareness to this disease in hopes of educating others. I wish her all the best in life.

Name :: MY NEICE JUSTICE EVELYN BLISS BRAKEFIELD Email_address :: marycreameans@yahoo.com

Story :: I like to start my story by saying god bless anyone that has suffered from sjs or anybody that will!!! Our 'LIL' Miss Priss (justice) did not survive from this and we had no idea it even excisted!!! Here is our story: On July 21 2006 My sister (kimberley) went to pick justice up from her dads (donnie) he said she was running a little fever like she was getting a cold an had a small bump on her back so he gave her MOTRIN!! When Kimberley picked her up (in corning ar) from her dads she went straight to the doctors office in poplar bluff (30 miles away from corning). There the doctor (Dr. Fernando) said she had chicken pox and gave her MOTRIN!!! then sent her home. Before she could even get to Pocahontas Ar her fever was OUT OF CONTROL!! She went to my other sisters (betty) house in Pocahontas and tried giving her a bath and everthing they could think of and nothing would take her fever down. Betty and Kimberley then called 911 and Justice was took to the ER in Pocahontas. Nothing worked at that hospital, the staff there even said she had no fever when she was hot to the touch!!!! Kimberley called Dr Fernando and he told her to bring Justice back up Poplar Bluff! Dr Fernando admitted Justice as soon as he saw her again. The bumps had spread quite alot and Justice's fever was up to 105. Thew the night her bumps had turned to blisters and covered about 75% of Justice's little body! Dr. Fernando came in the room and said Oh my goodness she has SJS and needs to be air vaced to St. Louis Childrens Hospital. So my mom ( Justices g-ma Lucy ) stayed with her until the helicopter got there. Kimberley and Betty took of to St Louis so they could meet the helicopter there. Then I was called (Justices Aunt Mary) on the phone and gotten told all of this. So I took off to St Louis (i lived in perryville mo). I meet the helicopter as it was landing I was pulling into the hospital and so was Kimberley and Betty. Not long after Justice was put on peds ward and was given fluids to keep her from dehydratng and was STILL getting MOTRIN!!!!!!!! When I walked into the room it was like a nightmare her little body was covered in blisters and popped blisters. She was in alot of pain!!! Finally the dr at St louis confirmed it was SJS. and was getting worse. He then told us there was no cure for it, it just had to take its course. The nurses then brought us some infomation on SJS and found out SJS is an allergic reaction. After the family thought about it the ONLY medicine she was taken was MOTRIN!!! When the nurse came in after that She was wanting to give Justice even more MOTRIN!! Kimberley said I dont think so give her tylenol. (someone tell me why even after she was diagnosed with SJS this hospital let the MOTRIN keep being admistered!!!!) They even gave her morphine for the pain she was in. Soon Justice got so bad she couldn't even talk. She looked like she had 3rd degree burns though out her whole body. Her skin was just melting off of her. Nobody cold even touch her with out her skin just sliding off. The doctors then told us that for the best she needed to be put on a medicine induced coma. They said that it would not only not let her feel no pain it would let her save her energy for the recovery stage even assuring us that when it was time for her to wake up she would. She was then took to the CCU ward. Day after day they would tell us oh shes not as bad as the others even told us that they thought it would be 100% recovery!! They said she had reached her peak and on the road to recovery! Well that wasn't true On July 30 2006 they could not get an accurate blood pressure from the night before and gave her blood pressure medicine approx. 5 minutes later she crashed!!! everything seemed like a nightmare (not dream). We was all standing in the room watching as she was going to heaven! The doctor stopped giving her cpr and looked at us and said theres nothing more we can do we are sorry!!! SORRY SORRY they had been telling us nothing but good things and now this, what the heck???!!!!!???? I went off, I picked the nurse up and thew her and we all begged not to stop!!!! It was to late!! Our Little Miss Priss had left on July 30 2006. If only we had known that MOTRIN would have caused this she would of never took it to begin with. We will forever miss and love our Justice. Now am wanting this to be known all over so they wont be caught off guard. We all have the right to know what the side effects are for any medicine especially KIDS. So now For anyone who finds out that maybe someone Justice helped save!!! I think SJS in my way stands for Someone Justice Saved

Name :: Liz Norris Email_address ::: nightowlnurse73@aol.com

Story :: I had SJS in 2001. It has been a long, hard road. I have never been told what caused the SJS, but I think that it was ibuprofen. Now, I have a newborn son, who just got shots, and the medical assistant told me to give ibuprofen for pain. Hmm. It is so hard for me to trust drugs now. Actually, to be perfectly honest, I have a terrible time trusting anyone is the healthcare field (even though I have been an RN since 1997). I have had several patients who claim SJS (from Lamictal). Anyway, I am here to support anyone who needs my help.

Name :: Mary C Wallace

Email_address :: pandasfoot1@msn.com

Story :: I contracted SJS after injuring my back.The Drs. and ER. had never seen a case and didn't know very much about it.I was sent home from ER.and told I had a simple reaction to the med.Flexeril.I was given steroids and told I'd be fine in a couple of days.My mouth was so blistered I couldn't even swallow.My hands and feet was a solid mass of blisters.I was in so much pain I didn't know where else to turn or what to do. By the next day,I could no longer tolorate standing. My sister called the hospital back and they wanted to know if I needed more meds.My sister ask the nurse how would meds. help if I couldn't even swallow them, she said we're more concerned of her dyhydrated skin and body. She drove me to the hospital and by then my blood pressure was soaring to.I was admitted to the hospital ,but no one knew what I had.The next day one of the resident Drs. came by my room and ask me if I knew what I had,I said no. He replied SJS,he didn't offer any imformation to me,so one of the nurses downloaded some of the SJS studys on the computer.Bless this lady for caring enough to take time to do that.The next day I was sent home to takecare of myself. I wasn't given any instrutions on how to do this,thank god I'm a nurse assistant so I pretty much knew the main thing was to keep my burns clean.I couldn't eat or swallow so I let ice melt in my mouth.After a couple of weeks the skin started to slaugh off.I had one follow up appointant so I'm not sure of the after affects.Iwas told my liver was enlarged.I had bleeding anally and vaginaly.I had a complete hysterectomy done.Also had to be hospitalized with phemonia. No one knew enough about SJS to say it caused any of these problems.Sometimes I have sharp pains in my hands and feet but I'm not sure if this is caused by nerve damage from SJS.I haven't found any Drs with experence with SJS. My eye sight has suffered.

Name :: Jen H

Story :: In the summer of '90, I was 14 years old and thought I had a summer cold, fever, sneezing, and coughing. On the first day, I had taken Bayer aspirin to eliminate the fever. On the second day, I had taken Benylin (which I don't think is made anymore) to handle the cough. The following day I developed a small patch of itchy bumps on my forearms. I brought it to my mother's attention, but she shrugged it off as poison ivy. That night was horrendous for me. I was burning up with a fever and felt as if I couldn't breathe. The next morning I awoke and went into the bathroom, and could not believe my eyes. My face was swollen, purple, and my whole body was covered in lesions. I had blisters in my mouth and throat. My mother rushed me to my family doctor who said that I had chicken pox. Not comfortable with that diagnosis, my mother took me to my dermatologist who immediately diagnosed my with SJS and admitted me to the hospital. He said that he suspected that the Bayer, and cough medicine may have been the cause, but he didn't know for sure. I was hooked up to an IV immediately, and by that evening, my condition had improved. The doctor told my family and I that if we would have waited any longer, that I would not have made it through the night. I also learned that SJS can re-occur. Now back then, no one had heard of this condition and quite frankly, there are still many in the medical profession that know nothing about SJS. I have had other medical issues and have disclosed my bout with SJS, and they look at me dumbfounded. This concerns me because I take various medication for various health issues, and with no definitive answer as to what caused the SJS, I fear that I may be at risk of contracting SJS again. I am a lot older now, and may not be as fortunate as the last time.

Name :: Julie Harvey Email_address :: ann45harvey@yahoo.com

Story :: I am writing to tell you about my daughter Billinda "Billi" Harvey. She is 9 and due to a medication she was given for a simple female itch, she suffered from (tens) toxic epidermal necrolysis syndrome which is a form of SJS only it affects over 30% of the body. Hers was 85% including the internal organs. We were told it was 1 in one million that this occurs. We are finding out differently now. Billi went to Children's Hospital of Wisconsin in Milwaukee. She is recovering very well thanks to a faithful following of people who kept Billi in their prayers constantly. I, however, am left with the question of what can I do for my child now? What can be done to help prevent this from happening to others? I would like to communicate with anyone who can help me find closure.

Name :: Cory Fry

Story :: So thats what they're calling it ????

A few years back, I thought I had something strange going on with my hands.... went to the Santa Clara Valley Medical Center (San Jose, CA), and asked them what they thought.

One doctor looked at my hands, sorta scratched his head, and said ' I dunno '. I was asked to come back the next morning (was Sunday afternoon the first visit there)... So, the following morning, made my way to the hospital again... (I wasnt thinking this was going to turn into that big of a thing... so far it just looked like red blotches on my hands)... well, during my 2nd visit, had a doctor look at my hands, he said " I dunno.... but you need to check into the hospital today " ... well, that captured my attention.

Soooooooo.... checked in.... they started me on a treatment of IV antibiotics... and unfortunately, the red splotches turned into big big blisters.... the doctors were still confused (and the doctors that man the Santa Clara Valley Medical Center are Stanford med staff)... so the antibiotics continued.... and then (this really starts to sound gross about here), the blisters popped, and turned into deep lesions (sp?), a few with nerve endings waving in the air (yeah, uncomfortable)... they did a biopsy of the center of one of the open blisters, and still confusion... they couldnt seem to get whatever it was, to grow in the lab..... (again, at stanford)...

Welll..... . one of the older attending docs from stanford happened to come upon the solution in a medical journal, putting the cause as a reaction to advil... though don't know if it had been named yet.... It eventually ran its course, more or less.... though about one year later a lesion on one finger opened up, with raw nerve endings, that gave me fits for about 4 months......

Still have major scars on one arm, a scar / small pile of never going away scar tissue on one finger, and only half a finger nail on the one finger where the lesion appeared on the 2nd go round....

At least thats my story.... isnt too bad.... and hoping it doesnt come back again......

Cory Fry Nor Calif

Name :: genie murphy Email_address :: genieandjim@mac.com

Story :: In 1993 my mother was given rocephrin to treat a urinary tract infection and she was dead within a week. Virtually all of her skin sloughed off and she was in agony finally being taken to the burn center and the Washington Hospital center where she died.

Today I cannot seem to find out if this is at all hereditary and I am very afraid to take medication. I have tried to find out if this is hereditary to no avail.

SJS took my mother and made us all afraid in the family - it is a horrible disease.

thank all of you who are bring this to the forefront.

Name :: Tedi Ann Templeton

Story :: Have been getting low level SJS outbreaks for years (unaware they were SJS), then about 7yr. into the process took some sulfa anibiotics in April of 2006 and ended up hospitalized w/a severe case of SJS that initial when misdiagnosed by the ER Doctor. I was sent home with "adult chicken pox". Five days later and much sicker I was admitted in the hospital w/a proper diagnosis.

Name :: nancy

Story :: I am one of the lucky ones. I had SJS when I was 14 and was hospitalized for six weeks. I was in isolation because the doctors had no idea what I had. My mouth and eyes were both affected. I had to sleep sitting up because this horrid stuff drained from my mouth constantly. I had to hold diapers over my mouth to catch it. I also had a few lesions on my body. I had lesions in my vagina as well.

But I didn't suffer any long-term problems. My eye sight has always been fine. I haven't had any recurrances. My tongue looks odd - kind of rippled on both sides, but since nobody really sees my tongue, it's not a problem.

I hadn't taken any drugs before the outbreak. I wasn't sick before it. Nobody has the slightest idea how I got it.

Name :: Lizzie Boxer

Story :: Hi,i`m lizzie Boxer. Last summer I went to overnight camp for a month. when we had a sleep out, I slept funny an hurt my neck. The nurse gave me motren. 2 weeks latter, still at camp, I woke up with a bright red rash! I had to sleep in the infurmery. It cept getting worse and worse until i could barley walk! When the took me to the doctors they said i had mono. But the rash cept spreading, so i had to go home. I slept at a hotel with my mom tosee if i could go back to camp for the last day banquet, but when i woke up i had blisters all over! My mom rushed me to the hospital where i met my dad in the emergancy room. I cept getting worse and worse so they put me in the i.c.u.(intensive care unit). 2 weeks latter i finally got out! I was crying tears of joy! But in 3 days i had to start school! Now almost a year latter i`m doing very well. I`m also helping out the S.J.S foundation...I got my govoner to declair August S.J.S awarness month!:-)

Name :: LaToria Justice Email_address :: kjustice_76@yahoo.com

Story :: My daughter was diagnose with sjs on 2-8-2006 it was devistating to see my child in this kind of pain. LaToria now have problems with her vision. This is something I never thought I would go thru my prayers goes out to each and every family member who went thru this.
Kim

Name :: Re: Georga Fazackerley

Story :: My wife and I would like to thank all the people who have prayed and written mail to us for our daighter Georga, (6 months) she is about to be moved from ICU today and appears to be making good recovery. It seem we have been very lucky as the SJS appears to have been a very mild case and has not affected her eyes or mouth but we will only know for certern as time goes on.
My concern now is what we can do to take the best care of her in the future, I cant seem to find any sites that give information about after care and prevention of it returning, any help would be good. We wish all the people involved with this site the very best and all will be in our prayers for ever more as SJS is a terrible condition and no one should have to go through it.

Name :: Sarah Barlow

Story :: In the late 70s, I had SJS and was at death's door, was hospitalised for 3 weeks, on intravenous Steroids and anti-biotics. I was only 17 1/2 and had just given birth to my son and prescribed Pembritin Penicillin after the birth. When he was 6 weeks, I started on the Pill, then after 1 weeks or so developed all the usual SJS symptoms, eye and mouth ulcers, infection down below, the rash from head to toe, fever and much more. They said either the Penicillin or the Pill had caused it. For some years, I got some of the symptoms, I would have mouth ulcers alone and so on. In the mid eighties I was hospitalised yet again with SJS, not as severe, and treated with oral steroids. Cause unknown. The present: early this year I started having eye problems, I was hospitalised with Corneal Ulcer, my Cornea being more than 70% thinner than it should have been, apparently no infection, viral, fungus etc, perhaps an auto-immune response, (my body reacting to the natural bacteria in my eye). The Doctor I saw last week (a different one) said it was related to SJS, hence me searching the internet and finding this. I am on on-going steroid eye drops and still having problems, photophobia. dry eyes.
In the mid nineties, I had some strange illness for a couple of months, had many diagnoses with P.I.D, then hospitalised a reaction to anti-biotics for P.I.D, possibly meningitis, then pleurisy, post-viral and then a back problem all within the two months.
In 2001 I became ill again and everything ground to a halt, I had to finish work, I had Chronic Fatigue.
In 2005, I developed Pneumonia and Bronchitis, I have never smoked. 2007 the eye problems.
Well is all this related to SJS?, reading other stories I now think this is possible.

Name :: Elizabeth Day Email_address :: sleepyhead053@aol.com

Story :: My son is 24 years old....When he was 16 months old he was given Pennicillen( spelled wrg) in a Air Force Clinic, even after i said he had had a rash reaction from that in the past. The health provider argued with me about it. Stupid me thought i was the dumb one!
After only one dose, he changed in a couple hours. He ended up being admitted to hospital with high fevers of up to 107! They didnt know what was wrong with him and transfered him to Sunrise Humana Hospital in Las Vegas NV. He was in Pediatric intensive care for almost 3 weeks, You couldn't hold him, couldn't wear a diaper because it was painful for anything to touch his body, his testical's and penis were swollen to 3 times normal! For along time Doctors specializing in (Infectious Diseases of Pediatric's) didn't know what was wrong. He had so many different doctor's we couldn't keep track of them. Finally they said it was Steven-Johnson Syndrome. For awhile they warned us that he might not live, BUT THANK GOD HE DID! After he came home from hospital he had to learn to walk, crawl, etc all over again. Since then he has been Learning Disabled, he does work and learns best by repetition.
It's very hard sometimes not to worry about him....As there are alot of things, especially career wise that he wont be able to ever do. Medicaid says he is disabled (meaning he will never be able to make a substantial amount of money to totally sustain himself. He has services in our community but Social Security Disability still continues to turn him down for SSI. One area he has excelled in was Driving. Please anyone could contact me if they like.
Elizabeth Day, 315-831-8471

Name :: Naziha

Story :: Hi,
I am recovering from SJS and would like to share my story with you. I am a 30 year old British female and have been working out in the UAE for the past year.

I had a swollen gland and was getting high temperatures, feeling tried, fainting, sickness, not eating much. This went on for a couple of days so I decided to go to the hospital. They put me on a drip and gave me some Paracetamol through the drip to bring the temperature down, I was given a prescription and sent home. I took the medication which included an antibiotic Augmentine (I don�t think I will ever forget that name).

I went home and after a couple of days my condition did not improve, my eyes started to itch and I was showing symptoms of conjunctivitis; so I went back to the hospital. My face started to swell up and I had lumps under my skin, my temperature was so high I could hardly move, luckily I had my husband with me. They admitted me but did not really say much more about my condition. I was told I had mumps; I was finding this hard to believe as it was my face that was swelling up. Then through blood tests they found some problems with my liver and told me I could have Hepatitis. It felt as though within a couple of days they had diagnosed me with almost everything.

When I woke up in the morning, my face looked as though it had lots of little white spots all over it. I touched my face and tried to feel the spots; my face seemed to be filled with liquid and the spots just spread and became fluid like. I was moved to a special unit, but wasn�t being told anything, I was checked by almost every doctor, but was not told anything conclusive. The following night as the nurse came in to change the drip (which was approximately every two hours), she looked at my face, gasped, said �I need to call a Doctor� and ran out of the room, that really worried me, but I couldn�t get my eyes open properly. I waited a while and she didn�t return so I decided to try to get to the bathroom and get my eyes open as much as I could and see what had scared the nurse. I asked a nurse to take off the drip and told her I needed to go to the bathroom. I managed my hold my eyes open long enough to see what had happened; blisters had formed on the top part of my cheeks and I had a rash on my neck and chest. Now I was getting really scared, especially as it just couldn�t be explained, I called for another nurse, panicked, screamed and asked her to get a Doctor, she went off and it seemed like forever while I was waiting. When the Doctor finally came he told me I had to wait until the morning to see the skin Doctor. I tried to stay calm and brave and waited for another Doctor to see me in the morning.

The next morning I was seen by a string of Doctors and the tests continued.

A friend whose husband is a Doctor asked me if I would like him to take a look, I took her up on the offer I was not getting any answers where I was. He took a look at me and suspected SJS, then recommended we transfer to another hospital where specialist care could be provided. My husband arrived shortly and the two of them began to arrange for the transfer.

A little later when friends visited, one of them noticed the gown I was put in seemed to be scratching my skin (which was very sore), so another friend picked up some soft clothes for me. I had the drip taken off and my friends helped me get to the bathroom. As soon as I took the gown off and took one look in the mirror my heart started to race and I was shaking at the sight before me. My whole front and back were covered in this blistering rash. My friends helped me get changed and tried to keep me calm, if they weren�t there I don�t know how I would have got through that moment.

I was feeling weaker every minute and was struggling to keep my eyes open. I was back in bed and in and out of consciousness. I was taken to another hospital and have vague recollections of tests and x-rays, but my eyes were sealed shut and couldn�t see a thing. I could hear all the sounds of the busy hospital and the voices of the various doctors and nurses that were talking to me, but was finding it harder and harder to talk to them. My mouth was blistering and my throat felt as though it had completely seized up. I was taken to my room and again so much was going on, and I remember the pain of the needles to connect the drip and more tests, but the voices of my friends, my husband and the lovely nurse gave me so much comfort.

During the night I had to sleep in an almost sitting position as lying down blocked my throat and made me choke. I just lay/sat there as I could feel the swelling of my face going down and huge blisters forming on my face. It was happening so fast that I�m sure if someone was looking at my face at the that time they would have been able to see the blisters coming to life. I felt some relief as my face was getting smaller. But my lips had swollen up so much that they were so sore, split and bleeding. At times when I closed my mouth I had difficulty opening it again as the lips would stick together.

In the morning the doctors came to visit and although I could see no one I could hear their voices, and then my husband and I were told that it was SJS and they believed the offending drug was the Augmentine. It was one comment that made all my worries and concerns just go away; �Hello, I�m Dr Thomas and I know you are going through a lot, but you will make a full recovery�. After that point, the fact that I couldn�t see, couldn�t move, couldn�t eat or drink, couldn�t breathe and was covering in a blistering rash didn�t seem to bother me as much. I just treated it as a waited game. In a way it was probably a good thing that I couldn�t see my condition, as the worried voices around told me that I was obviously not a pretty sight.

Eating food was such a struggle, even a sip of water stung my throat. I had to have some gel put into my mouth to help numb out some of the pain and then try to sip water through a straw. My husband had to feed me and was literally putting one drop of jelly into my mouth at a time and I just could not have more than a spoonful in total.

It was constant creams on the skin, drops and ointments in the eyes, drip changing, mouth �swish� medication, pills, injections, lip and gum ointment� it was a flow of something or another almost every hour.

However, the major contributor to getting me through was constantly having friends and family (who flew out) around me, day and night, talking to me, reading to me, telling me things that were happening �out there�, just carrying on with me as normal and keeping my spirits alive. I thank everyone for that and for all the prayers, because it was truly a miracle how it all turned around.

My skin started healing and peeling off my back and front, it was such a relief to see it come off. My eyes were staying open longer, although everything, and everyone was blurry it was great to see the flowers, cards and posters on the wall; my husband had created a display for me, so I had something nice to look at when I had my eyes open. I was able to struggle to the bathroom on my own and was eating a little more. My legs were huge with all the swelling and became very painful, especially at night. The skin on my palms started blistering up and peeled off.

The Doctors were very pleased with my rate of recovery and were amazed at how I was healing. They were expecting to keep me in for about four weeks but after two weeks in hospital they let me go home. The skin on my face was still not healed, but I was told it was just a matter of time, and the swelling on my feet and legs would also go with time. Within a week the majority of the swelling had gone down but walking was still a struggle; my legs ached just taking a few steps and stairs were out of the question. Nine days after I came out of hospital I flew back to the UK to recover fully with family around me.

Six weeks since it all started and my face is still in the healing process, and I get hot very easily, but thankfully good old English weather means we don�t get too much sunshine. I still have very dry, dark, patchy skin on my body, my eyes are painful and itchy and the vision in my left eye is still blurry. I can walk for longer periods of time but am exhausted afterwards. Headaches come and go and sometimes last for hours.

I am usually a very energetic person and am constantly doing things, and like to keep busy, and now not having the energy to do simple things is difficult to accept. I suppose it is just a matter of time before I will be back to my normal self, and I know it will take a long time for my skin to heal fully. I am so thankful I am still here and am recovering well.

I hope that my story can give some hope to other people who are suffering from SJS, that it can turn around, just keep positive and have people who care around you.

Name :: Maria Millbrook Email_address :: maria_millbrook@comcast.net

Story :: On June 16, 2007 I had oral surgery and was prescribed Penicillin to combat infection from my tooth. Four days later I stopped the penicillin treatment because I had started to break out in big red "bumps" on my legs. I went to Acute Care in my home town and was told it was just "a rash" from the penicillin and was given another type of antibiotic containing Sulfa. I went to the emergency room because the "bumps" on my legs had developed into 3-inch in diameter blisters that were getting very painful. I was diagnosed with some vascular disorder. I finally went to my doctor who was out of town while all of this was happening. He told me to go to an infectious disease specialist who was not able to see until 3 more weeks. By this time I was in so much pain that my husband and I decided to find another specialist in the SF Bay Area in the city of San Jose. I was diagnosed by this specialist as having SJS. On 7-23-07 I finally got to see the specialist in my home town who agreed with the specialist in the Bay Area. He diagnosed me with SJS too and gave me medications steroids type to help me with the painful blistering of my whole entire body. I was not hospitalized because my doctor stated that the blistering was not infected and I could go home just to be careful about getting my blisters on my legs cleaned and not exposed to any thing that would make them get infected. My blisters are drying right now and Thank God I feel a little better. I still have all the rash on my rest of my body, trunk, legs, arms. I have some in my mouth and nose but not in my eyes and none in my face. Thank you for publishing my story. Maria M. Manteca, CA

Name :: Okalebo Eskia Email_address :: eokalebo@gmail.com

Story :: Hello,
MY step brother Steven Achelun was hit by SJS 7 days ago. He is in Mulago referral hospital in Uganda but the management is wanting. The flayed skin area is not being treated as burns. ipicked this from your website. We, his relatives, are worried about other infections that might take advantage of the wounds. I have also leeant that caution against tetanous has to be done.

I have learnt a lot from your website, even if I have just had one hour on it. I will use this information to improve Steven's care.

Pray for Steven Achelun as he struggles in a place where the patient or his relatives have to buy the drugs or hunt around for medical help

Name :: BW Email_address :: zaire2afrika@charter.com

Story :: Thanks for all of your prayers for kyler Hubbard listed as kyler johnson see prayer posted #10. Kyler died July 18, 2007 at HarborView Medical Center in Seattle, WA. WE will miss this little fellow very much. I loved him with all of my heart and so did many others especially his family. Your prayers have been greatly appreciated. He fought a tough battle for 4 weeks but his young body could no longer tolerate what was needed and given to save his life. Special thanks to all the doctors and nurses at harborview who tried with all their might and medical abilities, we love you as well. From his special friend and neighbor whom he fondly called grandma barb. God Bless.

Name :: Michelle Houck Email_address :: michellehouck@bellsouth.net

Story :: To whomever it concerns:
I was reactly hospitlized on 07/13/2007 and i was taking a medication called Lamictal. After going to the emergency room 2 times and noone knowing what was happing and getting sent back home. I then went to a doctor here in Hartsville and she diagnosed me with SJS and that is when i was put in the hospital the very next day for a week on very powerful pain medication and steroids. My vision has been damaged and i have the sores on pretty much all of my body and my mouth is in awful shape. I still today am having a very rough time. The doctors told me i would fully recover in a month but i am starting to wonder, b/c it is if i am going backwards in my recovery. My body aches all the time and my vision is very blurry. Thank you for hearing my story.
Michelle Houck

Name :: Lori Osborn

Story :: I had went to a neurologist try to find help for my migraines. He prescribed Dilantin. I did not begin feeling sick like I had the flu and a fever till about the 5th day, the next morning I was in pain with a rash all over my body, Swollen lips, eyes. My husband took me to our family doctor where I was diagnosed with Scarlet Fever and given Penicillin Shots and medication. I kept getting worse, I felt like my skin was on fire, I had Insominia and a fever, My skin was bright red with a rash every where over a week had passed by and I was to the point I could not even wear clothing it hurt so bad. My husband started looking at my medication and researching them and came across information on Dilantin, where people have died from reactions to it. I immediately stopped taking it we contacted my family doctor and the neurologist and my family Dr put my on steroids after a week of starting to feel better they reitroduced the dilantin and I immediately responded to it and had to be put back on steroids. I lost layers of skin, it peeled off in big lay after layer. I don't want anyone to ever have to go thru that... I am lucky that we found out as soon as we did or the consequeses could have been fatal. It took 4 months for my skin to heal.

Name :: Edison Bittencourt Email_address :: e_bittencourt@uol.com.br

Story :: My daughter had a serious case of SJS ( associated with lamotrigine , a true killer drug) , stayed in the hospital for almost 20 days, about 15 months ago . She was treated with Immunoglobulin E .

At the time , Immunoglobulin E was an alternative ( see below) , and relatively new treatment for SJS. I found then an article ( in the internet , but of academic nature) relating the treatment of 12 cases , the results being collected , from Hospitals in Europe and the USA . All patients treated with immunoglobulin E survived - the age bracket was wide .

I bought the right to copy the article , and took the article to the hospital. Coincidentally , she was given Immunoglobulin E that same night - it is an expensive medicine , and we had to get authorization from the health plan, because of the price, and we got . She started feeling better that same night she took Immunoglobulin E .

As far as I know my have been the first time in Brazil that somebody with SJS was treated with Immunoglobulin E. This medicine is also used for other cases, like of of immuno -depressed people, and HIV patients.

I believe it has the potential to restore the body's system without the bad side effects of corticoids

Up to now he had ( thanks god) none of the serious sequels associated with SJS. The spots in the skin are going out slowly, and no damage in internal organs were detected. She still feels tired from any excessive effort.

She is being treated by homeophaty since she left the hospital. Has never taken antibiotics since , neithr any kind of pain killers, eats a very well balanced meals ( eats a lot) , plenty of organic food, and many fruits containing anti oxidants - the homeopathic doctor did allow me to give her antioxidants, even concentrates of natural antioxidants. However, I researched a lot to find which foods contained anti oxidants so we could plan her diet. One rule is NEVER EAT PROCESSED FOODS, FOOD CONTAINING ANTIBIOTICS OR HORMONES . BE CAREFULL WITH BEEF AND POULTRY.

Abstract of the paper abot tretamento with immunoglobulin E ( I have a copy)

Effect of High-Dose Intravenous Immunoglobulin Therapy in Stevens-Johnson Syndrome: A Retrospective, Multicenter Study Christa Prinsa, Carmela Vittoriod, R. Steven Padillae, Thomas Hunzikerb, Peter Itinc, John F�rsterf, Eva-B. Br�ckerg, Jean-Hilaire Saurata, Lars E. Frencha
Departments of Dermatology at
aUniversity School of Medicine, Geneva,
bUniversity School of Medicine, Bern,
cCantonal Hospital Aarau, Aarau, Switzerland;
dUniversity of Pennsylvania, Philadelphia, Pa.,
eUniversity of New Mexico, Albuquerque, N. Mex., USA;
fUniversity School of Medicine, Charit�, Berlin, and
gUniversity of W�rzburg, W�rzburg, Germany

Abstract
Background:Stevens-Johnson syndrome (SJS) is a severe cutaneous drug reaction associated with considerable morbidity, possible transition to toxic epidermal necrolysis (TEN) and death in certain cases. Objective: To determine whether treatment with high-dose IVIG in SJS patients may improve outcome. Methods: Data from 12 patients (collected between January 1997 and November 2000 from7 university dermatology centers in Europe and North America) diagnosed with SJS according to a recent consensus definition was analyzed retrospectively. All patients had progressive ongoing epidermal detachment at the time of treatment initiation. Patients with overlap syndromes and TEN were excluded. Tolerance, survival at 45 days after onset and total healing time were assessed. Results: Twelve SJS patients (mean age 44 years) were treated with IVIG at a mean dose of 0.6g/kg/day for an average of 4 days. An objective response to IVIG infusion was observed in all patients within a mean of 2 days, and the overall survival rate was 100%. Total skin healing occurred, on average, within 8.3 days. Time to total healing was shorter in a group of patients with fewer severe underlying diseases who had received IVIG infusion rapidly after the onset of skin lesions. Conclusion: High-dose IVIG may be effective in blocking the progression of SJS and reducing the time to complete skin healing.

Author Contacts
Dr. Christa Prins
Dermatology Department
Geneva University Hospital
CH-1211 Geneva 14 (Switzerland)
Tel. +41 22 372 9434, Fax +41 22 372 9477, E-Mail christa.prins@hcuge.ch

Dermatology , Vol. 207, No. 1, 2003
I am still studying , but I found anti - folate action as a common mechanism in drugs like lamotrigine, allopurinol, and sulfa, all used for different health problems.
Today , I found this very good paper ( source: http://147.52.72.117/IJMM/2007/volume19/number1/3.pdf )

Name :: Chandrashekar Viswanath Email_address :: gaya3shekar@gmail.com

Story :: It was indeed very touching to read the stories of SJS. I only pray all of them get back to normalcy at the earlist. We run a family business in the field of logistics in Bangalore, India.

In January 2005 I was treated for back pain by an orthopaedic doctor at the Manipal hospital, Bangalore and he prescribed me Etrobax 90mg ( Chemical name is coxib). I developed SJS and was treated in Manipal hospital, Bangalore itself for almost a month. I suffered silently and fought through it and now after almost 2 and half years I have become almost normal except for my dry eyes. I am currently using the Boston Sceral lens and its pretty good but still there are mucous secretions so I need to refresh the lens periodically.

My nail beds are very badly damaged and also my nipples especially the right side. I would request you'll to keep me informed if at all there is any other long term cure for my dry eyes. Luckily my cornea is unaffected, thanks to my Opthamologist at Manipal Hospital, Bangalore namely Dr. Ajanta Chakravarthy. She treated me very well and I am ever grateful to her.

If there is anyway I could be of any help to Steven Johnson Foundation please do let me know as Iam ever willing.

Name :: Ethan Flug

Story :: Hello. my name is Ethan Flug I am what alot of people are calling a surviver of SJS. The thing is as i see it its not me thats the surviver its my family. I had SJS back in July its now September and we just found out not that long ago that most likely what i have is SJS. I guess we are lucky that they guessed right on what to do to make me better. I think my family hurt more than i did. Every night in the hospital i couldnt sleep i didnt know i had a chance of dieing until after i was out and found out what i had but i was still worried knowing that if there was a chance i died what my family would do. I realize now that im lucky to have a family that cares as much unlike many whos family isnt there for them. I know some familys dont have much money and this hits a family right in the heart when there kid is laying in a hospital bed not knowing if they will survive. I had my life figured out and thought i knew it all. Well im just a kid but i know helping others is the right thing to do and thats why id like to help with the SJS Organization id like to do anything and everything posible to help familys in need even though my family got through this some dont and are stuck with hospital bills watching for watching their loved one fight for thier life. I feel that the more love given to these family by anyone will help just as much as a hospital give those laying in thier hospital beds more Love and make their life worth it all help them live and do great things for this country and this world as we all know it needs it right now. Im just a kid but i plan to fight for every right this country gives me and that god gave me by helping me survive. God Bless all whos familys do and do not survive

Name :: norhafiz bin ngadiman Email_address :: norhafiz.ngadiman@yahoo.com.my

Story :: salam!
im hafiz from malaysia, I'am a suvivor! it was on april 2006. i went to the clinic for check-up because of my swell toe.the doctor diagnos me with high uric acid in blood, GOUT. they gave me allupurinol as anti-gout treatment. im having it as prescribed,half a tablet,3 times per day. ive been having in for 15 days when the synthom occured. im feeling feverish, i cant sleep, headache and more. . . at the day, my eyes watering..getting red,and i cant bare to open it.my body feels very hot,ive decided to take a bath..when i rub my face with the towel, my lips skin tear..it was so damn pain full..I can take it anymore and decided to go to the clinic,im suprised that they dont know what happend to me?they told me to stop medication and having the anti biotic for a week.i felt wieard, and decided to go to the general hospital,thanful there is a doctor doing research on SJS.Im admitted to the ward and thanks Allah that my decision was wright.they told me if im late,i should be in coma for a week.i was with drip for 3 days,my mouth and troath having ulser,icant eat,even a drink and paracitamol makes me cry in tears and pain.i recover very fast and got out from there after 2weeks.they still wanted me for treament, but i skip it because my graduation is very soon,need to study. I think im well now? Shukur alhamdulillah = )

Name :: Claudia Email_address :: BearPaw93@aol.com

Story :: This story is on be half of my mother Marie who was diagnosed with a brain tumor. May of 06 went in the hospital to have brain surgery to remove the tumor. She was only awake for a day when she developed a fever and which they found she had staph, she then got pneumonia, She was given all the drugs to combat the hospital caused illnesses and would not wake up. One week went to two weeks and then started telling us to put her in Hospice. The think is, she was responding to my questions by moving her feet and hand squeeses. She began having sores in her mouth, and the Drs. just kept saying she was a mouth breather. By the fourth week I started to get outraged and demanded a ENT and Dermatologist to exam her in the ICU. I kept telling them and asking them what they were giving her. They said nothing that would cause her to not wake up. So they contiuned to badger my family about stopping tube feeding and wanted us to bring her down to Hospice. On our demand a dermatologist and a Neurologist came and examed her. They were horrified at the condition of her oral cavity and couldn't understand how all the Drs. could have missed a simple explanation to this deadly disease called SJS that she now had. and to what was causing this. The Neurologist quickly demanded to see her labs, especially Dilantin that had been given to her daily since brain surgery. Her levels had not been taken but only once in the four weeks that she was there. She had three times the amount of Dilantin in her body that she was suppose to have. We are talking gross neglegence an who was really responsible for this life threatening illness cause by Drs, Nurses, hospital. Of course, her Neuro-surgeon felt somehow responsible and said, "we were poisoning her death and was very remorseful and called everyone involved to have some meetings to find out what happened. I feel that the many Drs. that came into her room during those four weeks did not bother to even look at her labs to check for drug errors. Her treatments for SJS were horrible, glad she slept thru some of the treatments. Marie woke up and had intense PT to gain back all her strength from being in a semi-concious state. It took her one month of in hospital rehab and one month of out patient rehab. But, it delayed her radiation of her tumor by two months, she was to begin treatment for the cancerous tumor two weeks after surgery. Well, she bounce back, but the tumor began to grow and she started to decline from then on and passed away seven months later last Feb. The time we could have had with her would have been so precious but the Drs. took away those months giving her so much illness which in turn caused her to spend so much time in rehab. She was in such good health before her hospitalization, no other medical conditions. How she survived all that happened to her is beyond belief. Something needs to be done but I don't know what. It was an ordeal for our whole family and so uncessesary. That is the story of Marie, my mother.

Name :: Kate S.

Story :: I may have already shared a version of my story before, but I can't remember and this is a much more detailed version with more accurate information that I believe may be helpful.

Hello-
I am a 30 year old caucasian female and the short version of my story is that I developed TENS over 80% of my body and spent over a month in the trauma burn unit at Grady Memorial Hospital as a result of taking Piroxicam (Feldene). Here's the long story - I am going to try to be as specific as I can, so that people may contrast and compare thoroughly. I feel that this is the best way for us to better understand the what and why of SJS/TENS. If I seem to state the obvious for some things, please keep in mind that not all cases are the same and some other people may need explanation. Also, please excuse any misspellings.
As of June this year (2007) I was in fairly good health prior to this incident, with the exception of having severe pollen allergies with asthma and mildly bad joints. I am also moderately allergic to many fresh fruits and vegetables and tree nuts. Latex has also caused minor irritation to my skin (i.e. I cannot use traditional condoms). Last, I had a reaction to the antibiotic Augmentin a couple years ago in the form of a rash on my stomach and legs as well as feeling hot - not like a fever but internally hot - a feeling I am sure most of you are familiar with. Looking back and knowing what I know now, it is my personal belief that I experienced Erythema multiforme from the Augmentin. At the time I was treated with a shot of steroids and discontinued the medication and the symptoms went away.
Then, on June 2nd of this year (2007), I noticed that what I thought was a vaginal yeast infection was not improving but getting worse, even though I had used a over-the-counter yeast infection treatment that I had used with success in the past. In addition, my eyes were irritated and had some mucus in them (not from an outside source - I was not using any kind of eyedrops and I did not have contacts or glasses).
I was concerned that instead of a yeast infection I might have a urinary tract or bladder infection, so I decided to go to the hospital emergency room (because it was a Saturday). After waiting many hours I finally was seen by a doctor. By this time my external vaginal area was inflamed and somewhat painful to the touch. My eyes also continued to be affected with mucus. In addition, I could feel that my mouth was beginning to get sores - I could feel my gums swell in places and I had that distinct metallic taste of blood.
It was faint and the doctor claimed she couldn't see anything when I asked her to look in my mouth. I was struck by and mentioned the oddity that all of my mucus membrane areas were reacting at the same time. The doctor brushed it off as mere coincidence, saying that I just had a bad yeast infection and just needed regular eyedrops for my eyes, completely disregarding my mouth. I left the hospital, got my yeast infection prescription filled and went home. I applied the medication as prescribed but over an hour later I still was continuing to feel worse and not better.
I called the hospital and somehow managed to speak to the doctor I had seen. I asked her if I should have at least some relief from the vaginal cream and she said yes. I told her my situation and she advised me to come back to the hospital. It was around 11:00 p.m. at this time, but I went anyway because of my increasingly inflamed and painful state. I was taken to a room fairly quickly, but once I was there I had to wait a long time again.
By now I was unable to sit because of the pain. My eyes were worse and my mouth felt very raw. My fiance noticed small red pimple-like spots on my back. A different doctor saw me and told him about my previous visit. He did pay closer attention to my eyes - he put some sort of florescent dye in them and looked closely with a blacklight flashlight. This was his diagnosis: a really bad yeast infection and a viral infection in my right eye.
The connection of all mucus membrane areas and the red spots were brushed off as nothing and I was told that these are not issues that are important enough to come to the emergency room for and I should not come back. By now it was around 2 a.m. and I went to the pharmacy to get my prescription eye drops. I went home, took the medication and went to bed.
I woke earlier than usual the next day (June 3rd) in a state of anxiety - I KNEW something was not right. Over the course of a couple hours, the red spots spread, my lips began to swell, my skin looked grey and I felt hot. (As with the Augmentin reaction - this heat is different from a regular fever. I felt hot in my body, like my insides were boiling) I decided to go back to the emergency room - a different one this time.
When we pulled up to the ER my breathing was becoming labored and I was processed fairly quickly. At this time I asked my fiance to document how I looked with his camera. (He continued to take pictures throughout the whole experience. I am debating whether or not to post them) The first photo shows me with red spots all over my body, red inflamed eyes and huge, swollen lips.
The ER staff quickly realized that I was having some sort of reaction and, because they are a teaching University hospital, called in a group of various specialists to look at me. At first it was a toss up between adult chicken pox (shingles) and SJS. They put me in a private room, put me on IVIG and took a skin biopsy. I was kept there overnight for observation. The diagnosis of SJS from the NSAID Piroxicam came in the morning after I was moved to their ICU because my breathing had become difficult again.
By now the red spots were getting bigger in size and it was clear that this was not going to pass quickly or easily because I had been on the Piroxicam at the strongest dose for over a month and this particular medication has one of the longest half-lives of any medication on the market. In other words, it builds up in your system and it takes a very long time for it get back out. I was put in an ambulance and taken to Grady�s trauma burn unit in Atlanta, Georgia. I stayed there until July 6th.
Over the course of my stay the SJS became TENS when over 80% of my top layer of skin (the epidermis) blistered, died and came off. I was treated the same as someone who had 2nd degree chemical burns - only mine came from the inside out. My internal organs also sloughed, causing my throat to get filled up with dead tissue. I was given a catheter - a very painful event because by then my vagina was so severely inflamed that even regular urination felt like razor blades (please know I am not exaggerating). I was given Hydrotherapy every day - an intensive bath in which dead skin is actively removed. After a week I was put into a medically-induced coma with the drugs Versed and Phentonyl, given a tracheotomy and put on a ventilator.
I stayed like that for over 3 weeks, including 10 days when my lower layer of skin (the dermis) was almost completely exposed and my epidermis (top layer of skin) was failing to grow back. With each day that passed my chances of survival decreased greatly. Amazingly, my skin finally began to grow back and my recovery thereafter was actually fairly and comparatively fast. I began to breathe on my own and learned to walk again. On the second to last day the feeding tube that had stretched all the way from my nose down to my lower intestine and the life-saving yet annoying tracheotomy in my neck were finally removed.
Since coming home this has been my life: -Moisturizing my dry, scarred skin, including the patches on my left arm where I had a secondary infection and on my neck from the tracheotomy
-Dealing with my severe dry eye by using preservative-free eye drops, Restasis eye drops and nightly ointment (I don't believe the Restasis is working)
-Not being able to drive, work or do any other eye-focus oriented activity
-Going to physical therapy twice a week for strengthening, stretching and conditioning
-Trying to find a general physician who will be my doctor. I was turned away by 7 so far
-Going to appointments to see Dermatologists, Opthamologists, Rhuematologists, Gastroenterologists. etc.
-Having to stay out of the sun
-Struggling with chronic fatigue
-My pre-existing allergies and joints continue to be problematic and now I am advised not to use any medication unless I absolutely must, so treatment is tricky at best
- Last but not least, I had to postpone my wedding. It's hard to be bride when your fingernails are falling off, you have a bald spot right on top of your head and your skin is unpleasant to look at. I would say the emotional toll is nearly as great as the physical.

Thank you for taking the time to read my story. I hope the information therein is helpful to others.

Name :: Billie Email_address :: billmlong@skywi.com

Story :: I am 35 years old and a mother of three wonderful children and I great hubby of 17 years. I suffer from slight depression, so my doc after trying many medications settled on Welbutrin maybe it would be the one ! Well the rash started after the fifth dose . Went in to see what was up and he says you are having a drug erruption , take these steroids and you will be as good as new in the morning . Well I wasn't within two days my rash had coverd my body and my face was swelling and I had some hearing loss. Finally fed up I go to the ER and they say you have SJS . I spent 5 days in the hospital on steroids and insulin because my sugar went out of sight . They sent me home with out telling me what it was and what I am really facing . Will the rash ever go away? They say well we think so ! Will I get this again? Well we don't really know . I think telling your daughters story is brave and thank you for giving it to me !! I consider it a blessing !
Billie from TX.

Name :: Nicole

Story :: I was never actually diagnosed with SJS, but after doing some research, I am pretty sure that I had SJS. It all started the Summer of 2005, I was 19 and home for the summer, doing an internship in Washington, DC. My doctor had prescribed me Bactrim to treat a urinary tract infection, which was nothing new because I get frequent urinary tract infections and they had given me Bactrim in the past without any issues. I had been taking the medication for a couple of days when my mother and I went out to lunch at an Indian restaurant. After eating lunch, I remember sitting in the restaurant and feeling very funny, like I was high or something. I had never had Indian food before so I just figured that it was something that I ate. But that feeling didn't go away, it lasted for the rest of the night. The next morning I woke up with a really sore throat and a cough. I figured that I had probably picked up a cold or something on the metro so I just ignored it. While at work that day, I realized that my lips were becoming really chapped, it kind of freaked me out because I am a chronic chapstick user and I never get chapped lips. That night when I went home i started to get a really funny feeling in my mouth, like the skin on the roof of my mouth was coming off. The next morning I had to go stay at a hotel in DC where the company that I was interning for was hosting a grant competition, I had developed a slight fever and blisters were starting to form in my mouth. I freaked out and figured that I was having an allergic reaction to something but I wasnt sure what, so I went and bought some benadryl and took that when I got to the hotel. Throughout the day I started to feel worse and worse, like I was coming down with the flu, my blisters had started to get bad and I wasn't able to eat or drink anything because my mouth hurt so much, my eyes were itchy and my fever had gotten worse as well. The next morning I missed a staff meeting in the hotel because I couldn't get out of bed because I was so sick, my parents had to come get me and take me to the doctor because I didnt feel like I could drive. My doctor took one look at me and told me that I had some type of herpes virus, so she wrote me a prescription for Valtrex. I told her that I had never had any herpe symptoms before and I thought that it might be some sort of allergic reaction, and she assured me that it was not an allergic reaction but it was a virus. Then she asked me if I was taking any medications and I told her that I was takign Bactrim for a UTI and she told me to continue to take it because you should't stop takign antibiotics prematurely. That evening my blisters got worse and started to go down my throat, and I got really scared. I still couldn't eat due to the pain and I didn't like not knowing what was wrong with me. I knew that it wasn't herpes because I had never heard of a person with herpes experienceing all of those symptoms. I then decided to stop taking the Bactrim, even though I had never had problems with it before, I had started to get sick after I had started takign it (initially I blamed it on an allergic reaction to something in the indian food). My doctor had also misdiagnosed a cyst the previous year, so I didn't really trust her. The blisters remained in my mouth for about three weeks and it was really hard for me to eat, and consequently I lost 15 pounds because of it. The only thing that I was able to digest without too much pain was ensure...and to this day I cannot touch it. I devoted a lot of my free time at work to researching possible causes for the blisters and other symptoms that I had experienced because I still didn't believe that I had herpes. That's when I came across SJS. I had never heard of it before but the one common factor with SJS and the my symptoms was the Bactrim. I had never had a drug allergy before, but when I told my mom that I might have had SJS she admitted to me that she and my brother are both allergic to Sulfa and that maybe I was too. The doctor has never confirmed that I am allergic to Sulfa, but after what happened to me I am too afraid to ever take Bactrim or any other sulfa medication again. Oh, and since then, I have no have one outbreak of any herpe like symptoms.

Name :: stephen o gorman Email_address :: stephen.ogorman@hp.com

Story :: My Dad who is 84 is on a life support unit having been diagnosed with SJS approx 2 weeks ago. He went into hospital with MRSA in his feet( which he contracted in the same hospital 3 years previously )about a month ago. He was on a drip with antibiotics and saline for about 2 weeks when he developed an Infection which the doctors could'nt diagnose . They very agressively treated the symptons with large doses of antibiotic . The next day Dad was sitting up eating his breakfast and feeling fine,that afternoon he developed a rash and within hours his skin started to peel off. His mouth was almost unrocognisable within 24 hours . We have been told that his heart is damaged and that there is also Kidney damage. Before the outbreak of SJS his heart while it had an irregular beat seemed fine and his kidney function had'nt been great but was still functioning. What I would like to find out is , is it possible that the SJS could have contributed significently to his rapid decline.
I don't expect that there will be a good outcome so as you read this please say a prayer for him, his name is Tom O Gorman. We live in Ireland

Name :: Thomas W. Fort Email_address :: twifs@ureach.com

Story :: I sing classical and church music, and have an MA in Journalism.
Just after the turn of the millenium, had been taking low doses of phenobarbital for mild temporal lobe epilepsy, for about 10 years. The prescribing doctor was an internist and family friend.
Started developing spots on my sun-exposed arms, and had onset of ragweed allergy. As some years went by, the spots worsened, a mold allergy came on, and ragweed season brought protracted flus with bronchitis. By 04, was having large painful armpit boils, and oral viral lesions. Colds and flus came often, and severely.
Married in 05, and moved to Houston. Distressed at my decline in health, with my first marriage ahead of me, I Googled my various symptoms, and SJS popped up. My neurologist, and new primary doctor both agreed that it appeared to be a phenobarbital allergy; I had aleady stoppped the drug, around May of 05.
Treatment since then has been a new epilepsy drug (gabapentin), steroid/aloe vera cream, occasional oral steriods for entrenched infections, occasional antibiotics for staph attacks, plus a variety of vitamins, yogurts, and black bean essences.
Two and a half years of treatment have now passed. The boils and oral lesions are pretty much gone. Colds and flu run long, but more normally. Ragweed allergy remains, and got bronchitis again this fall, but it also is passing more normally, with zyrtec and expectorants. The old arm spots are still there, but fading.
I still sing classical and church music.

Name :: Hannah

Story :: I was off to my first year of college, far across the country from my home. Within a few days of arriving, I came down with pneumonia and was prescribed both amoxicillin and azithromycin. I was very blessed to have an aunt and grandmother living within an hour, both of whom are nurses. I went to stay the weekend with my grandmother, hoping some TLC would cure me. I was feeling good and looking forward to the first day of class on Wednesday. Saturday my lips started swelling. My grandmother knew that was a sign of allergic reaction and took me off the medicine right away. I feel so grateful for this. Because I stopped the medicine early, I had a relatively mild case of SJS. If I had just been in the dorm I would have overlooked the lips, taken more of the medicine, and possibly found myself much worse.
After the swelling I called the campus medical center and they told me to stop the medicine and put me on Benadryl to stop the swelling. It didn't work. The next day my eyes were bloodshot and sore, like pinkeye, my lips swelled, and I had white around my mouth. On Monday my grandparents drove me back to the medical center and my mom flew out to be with me. When I got there I was so dehydrated they put me on IV, a difficult task because my veins were hard to find. I stayed at the campus infirmary and continued to get worse over the next week. They put me on a different drug for pneumonia that I reacted well to. The doctors were puzzled about what I had. I saw many of the campus specialists. I heard ideas of conjunctivitis, mono, thrush, EM, and I�m forgetting some. I had around 30 large lesions on my skin and many on my lips, mouth and thought. My lips completely scabbed over; I�m told they looked like charcoal at one point and I was unable to eat anything beyond broth syringed in my mouth. In addition to the lesions, I developed a new lacey rash and was transferred to the nearest hospital within hours. There I saw many specialists, but they all agreed it was SJS. From that point I got better little by little. I stayed in the actual hospital for 6 days and was released back to the infirmary on my 18th birthday. I stayed there for another week and a half. I recovered �quicker than could be expected� according to the doctors. I was able to start school while living in the infirmary to help me transition. I moved back to the dorm when I felt better but still couldn�t eat solid food. My lesions disappeared quickly, but my lips took weeks to heal. Now, a month later I�m just experiencing the joy of eating solid food again and am nearly caught up in all my classes. But most of all, I�m thanking God for his protection and sparing me from any permanent consequences.

Name :: Marci P Email_address :: marci_peek@frontiernet.net

Story :: I almost feel silly sharing my story, since so many of you had SJS way worse than I did...but I haven't noticed anyone with the twist in their story that I do. So here goes:

On March 27, 2007, I was 37 weeks PREGNANT with my first child when I got sick with a virus that gave me 103 degree fever that I couldn't shake. After a visit to the ER where they gave me Zofran for my nausea, I developed a bumpy, hot rash on my chest. To make a long story short(er), two days later my rash was out of control and my blood work was crazy, so they took my baby girl by emergency C-section. Once she was safely out of me, they put me in the ICU under ice blankets and on morphine so they could figure out what the heck was going on with me. I don't remember much of those days (thankfully) due to the drugs. After about 4 days, 2 skin biopsies, 50 needlesticks, and any other test you can think of, they finally realized I had SJS. When the doctor told me what I had, I gasped "REALLY?!?!" He was surprised that I knew what SJS was...some doctors didn't even know! But I am a Discovery Health channel addict, and remembered a story they had on there on SJS. Thankfully, I didn't get it as bad as the girl in that story; my rash was only from my waist up, down to my elbows, and on my neck, face and scalp. I also shed skin from the inside of my eyelids, nose and mouth (including my throat and esophagus). I couldn't eat for days, and I ended up having to stay in the hospital for 2 weeks. The worst part was that this was supposed to be the happiest time of my life, welcoming my new baby girl into the world, and it turned out to be one of the scariest times of my life. I didn't even get to meet my baby for 3 days. It was horrible enough, but thankfully I didn't have any lasting effects, no vision changes, etc. I have a couple scars from the biopsies and from an ECG patch that took off all the skin it stuck to. But I am worried to hear of the number of people on this site that have had more than one episode!! I sure hope I never have to go through what I did, ever again. All is well now, my little girl and I are happy and healthy. Thanks for listening!!! Everyone BE HEALTHY!!!!!!

Name :: bryan medcalf Email_address :: bryan@bmedcalf3.wanadoo.co.uk

Story :: i had sjs,around 10 years ago it wasn't found out how it started ,i was in hosspital,for 4 weeks ,eyes sealed shut throat closed,targets all over,burning sensation in testacles,lips bleeding .made full recovery.antibiotics made me sick.imune system kicked in then i got better.
i would not wish it on anyone.regards bryan.

Name :: ASHLEY P. Email_address :: ALH04@HOTMAIL.COM

Story :: I HAD A STOMACH VIRUS WHEN I WAS ABOUT 4 YEARS OF AGE. MY MOTHER TOOK ME TO THE EMERGENCY ROOM AND I WAS PRESCRIBED A MEDICINE THAT IS YOUS ON BRONCHITIS PATIENS. WELL THE MEDICINE CONTAINED SULFUR, WHICH MY MOTHER DIDN'T KNOW I WAS ALLERGIC TO. SO SHE GAVE ME A TEASPOON BEFORE PUTTING ME TO SLEEP. I STILL REMEMBER THE PAIN LIKE IT WAS YESTERDAY. I WOKE UP WITH AN ITCH AND A BURN. MY MOTHER, 8 MONTHS PREGNANT WITH MY BROTHER, TOOK ME TO THE EMERGENCY ROOM. I WAS DIAGNOSED WITH SJS. THE DOCTORS TOLD MY MOTHER THAT I WASN'T GOING TO MAKE IT AND THAT IT WAS THE WORST CASE THAT THEY HAD SEEN. DOCTORS KEPT COMING IN TAKING PICTURES AND GIVING ME SHOTS. MY LIPS WERE STUCK TOGETHER BECAUSE OF THE SCABBING. MY SKIN WAS ON FIRE AND I COULDN'T SLEEP. MY EYELIDS WERE ALSO STUCK TOGETHER. THE DOCTORS HAD TO SCRAPE MY EYELIDS, WHICH WOULD CAUSE PROBLEMS IN THE LONG RUN. MY FINGER NAILS AND TOE NAILS PILLED COMPLETLY OFF. THE SKIN ON THE INSIDES OF MY HANDS AND THE BOTTOM OF MY FEET PILLED OFF. THIS ILLNESS CHANGED MY SKIN COMPLEXTION AND THE TEXURE OF MY HAIR. I WAS IN THE HOSPITAL FOR AT LEAST 3 MONTHS. AS I WAS GROWING UP I HAD PROBLEMS WITH MY EYES. I HAD TO HAVE SURGERY ON BOTH EYES. I CAN'T EAT CERTAIN FRUITS. MY BACK IS STILL SCARED FROM THE BURNS. NOW I AM 19 YEARS OLD AND THIS IS MY SJS STORY.

Name :: Shirley Renner Email_address :: hemetdan@verizon.net

Story :: In Oct 1997 I broke out w/rash entire body W/exception face I was told it was Postular Psoriasis, I have been treated with Prednisone,Methotrexate,Soratane 50mg , utraviolet lite treatments twice week for year. "I ended up in Hospital w/IV then to home, it took approx 6 weeks for my skin to clear up . 2001 i fractured my hip, Hospital =put in pins, however the drugs taken for infection caused an outbreak of Postular P they did not know how to deal w Phorisis , pain pills and sent home with repairing hip and bad case of Phorisis (P.P. 2003 I broke out again, Doc started me on Embrel 50 mg twice wk for two years, finally didn't work anymore.
2006 New Doc " Broke out got two weeks of IV but to no avail so they tried Remicade on me , one dose and I was back in hospital Shock,vomit,low blood, "Had Pic in arm for tow months got infection, actually got Sepsis finally released w/Ciprofloxin 500mg got worse because I did not suspect it was the Pill , A infection disese Dr. told me that I had been suffering w/ bad uriary infection for approx two years while i was taking Embrel ? I still get UTI and found a strong reaction to antibodies like Amoxicillin,Clindamycin,Nitrofurantoin Mono/Max, all sulfer drugs each time systoms like and Pustular Phorisis, which looks a lot like S.J.S. I have changed Doc again as w/my last visit to hospital reacting to Clindamycin My Doc comment was no you don't have SJS. and dont get sick because I don't know how to treat you, "I will ask my new Doc to consider S.J.S so that I might get the right treatment a new Biospy maybe. Thanks Will let you know , Any information you may have will be appreciated.

Sincerly Shirley

Not looking for sympathy , just good information Thx

Name :: Ann Lucas

Story :: My son, Joshua, was diagnosed with SJS in March 2004. The strange thing was he was not on any antibiotics or OTC medication at the time. We suspected it to be caused by one of two things: A bubble bath or BenGay (he was complaining of a stiff neck one night). My husband noticed the next morning his neck was red where the BenGay was applied. I called our family physician and took him in for a look. Blood was taken and it was said to be a allergic reaction and to take him home and keep an eye on him.
The next day, Joshua had looked like someone had poured hot oil all over him! He had open sores, eyes were swollen, and a fever of 102 degrees. He was in pain. I took him back to the physician and we agreed he should be admitted.
Joshua spent six days in the hospital. He was treated like a burn victim. Since then, Joshua has not relapsed. We are careful what antibiotics he is prescribed, what is applied to his skin (no more BenGay), and no more bubble baths. Thankfully, Joshua has no scarring and his eyes and mouth are normal. I can remember the physician asking me why I don't take photos of his ordeal and I remember stating that I didn't feel that it was a "kodak moment". Now, sometimes, I wish I had.

Name :: Maria Millbrook Email_address :: maria_millbrook@comcast.net

Story :: I was diagnosed with SJS in July 2007. Since then I have been on Prednisone (steroids). I had the sores on my legs and they finally healed after about 3 months of going to the wound care nurse and Infectious Disease Doctor. I was released to go to work and was told to diminish my Prednisone's dose to 25mg daily from 60 mg going down 5 mg per week. Well, I had a flare up on my uppen body and for 3 weeks I have not been able to get the bleeding or pain down even though I have been taking the steriods. I was diagnosed with STEROID-INDUCED DIABETES and some damange to my kidneys. That being the reason by my flare up doens't do away even though I have been taking the prednisone. Anyone can let me know if they have taken any other type of medication other than PREDNISONE?? My name is Maria Millbrook, you may contact me diretly at (209) 740-7314 or email me at maria_millbrook@comcast.net thank you all so much!!

Name :: Karen

Story :: I woke up in the morning and noticed my skin hurt and was becoming tight and red. My skin looked like one big blister from my chest up all over my face and my back and the back of my neck. I tried puttin lotion on it but it got worse and then there was a big red spot on the middle of my chest that looked and felt like my skin was eating away at itself. I called the paramedics and the took me to the burn unit at a hospital near me. They first thought it was eczema and then dermatitis. Then they said it was Stevens Johnson Syndrome. I literally thought "'This feels like I could die from it" I was really worried. I was in the hospital for one week and they doctors gave me some lotions to put on. One was called Ceralin and the other was Aquaphor. Both you can buy at Walgreens. They apparently worked because I was out of the hospital in a week and the burn and redness disappeared. Two weeks later it happened again. Same exact thing but my left eye was involved. My eye was swollen shut and a thick white film developed over my left eye and I couldn't see out of it. This time the paramedics went to another hospital. They gave me the same treatment with some hydrocortisone. All my burns disappeared altogether. All I have now is slight double vision in my left eye. My eye doctor is going to perscribe my hard contacts to correct the double vision.

Name :: Heidi

Story :: My cousin was just diagnosed with SJS on Saturday evening (Nov. 3rd). She is supposed to be a bridesmaid in my wedding in 12 days :-( I haven't seen her in awhile since we live many states away and we were both looking forward to this so much. I feel so helpless, she is in isolation in the burn unit at the hospital and so far her eyes are fine so that's good, she's just swollen and has many sores/blisters. She said it's very painful and itchy and she's on a double morphine drip. I don't know how long her recovery will be, it looks like it can range from a week to many months according to things I've read. Your site has some great information, thanks for the help and to all those affected by this disease, you are in my prayers and please keep my cousin in yours. Thanks.

Name :: Diana Bainbridge

Story :: I have had an SJS allergic reaction to Asprin, Bactrim, (Sulpha Drugs) and Non-Steriodal Anti-Inflammatories - I have only taken Bactrim on one occasion many years ago - I thought i was going to die; i got that sick.Asprin and the NSAIDs cause all the skin to peel off inside my mouth, nose, gums, eyes, throat, and internally; I suffer photophobia; and cannot stand direct sunlight; (I actually wear sunglasses indoors), and also in hospital, looks stupid, but i am comfortable; I cannot 'sunbake' i actually 'bake' - and burn rapidly. I also have another 'rare' genetic condition known as Addison's or Pernicious Anemia - (lack of intrinsic factor). Thankfully SJS has not had a devastating effect on my health unlike other stories here. The Hospital i attend seems to be very aware of adverse drug reactions; and i am always given a red plastic ID Bracelet to wear whilst in Hospital; which alerts anyone to check my medical record BEFORE giving me any drugs, which keeps me SAFE in Hospital.

Name :: Brenda

Story :: I was given Septra for a urinary tract infection in 1976 when I was nineteen yrs old. I had no problems the first day but during the first night I slept very poorly. By morning, I noticed red blotches on my legs but I figured it was from moving around in bed so much - I took the Septra and a few minutes later I watched myself in the mirror become as red as a tomato. I skipped my morning class and went to ER where the doctor just told me to stop the Septra and prescribed two other pills to treat my UTI. By that evening, I looked like I had a bad sunburn all over my body - it was in February, cold and snowy. At that time, nothing more was done. The redness gradually faded and within a week my skin was clear. Now I wonder what would have happened had I taken another dose of Septra. I was very lucky. In 2001, I was going through a separation and divorce and my blood pressure was a bit high so my physician prescribed Hydrodiuril at a small dose of only 12.5 mg to get rid of excess fluid retention. The first few days I did eliminate more liquid and my blood pressure was normal but by the third day I was restless, my BP was going up and I was having a hard time walking as my back was very sore. By afternoon I was bent in two by the pain in my back and legs. I looked up info on diuretics such as Lasix and Hydrodiuril only to find out that they contain Sulfa. I immediately stopped the Hydrodiuril, contacted my doctor who said that he had no knowledge of diuretics containing Sulfa. My blood pressure came down on its own with exercise and stress management and I am very cautious about taking any medication for any reason.

Name :: cecily diness

Story :: phyllis' story, my mom..my mother had to take some newly prescriped phenobarbital and she was not feeling at all well. She really did not know what to expect, nor did my dad or my brother or myself. We were just kids at the time. Well actually teens, but that is just kids. Anyhow, my mom Phyllis Allegretto Diness had begun to mention that her skin was itching, burning a little. She did not like the way it felt. My dad called the doctor's several times and was instructed to rub lubriderm lotion on the affected areas. My father took my mom in for an office visit and she was sent home. I knew my mom was not feeling well and as a teenager, I felt bad and depressed about it, pretty helpless, not knowing how to help her out, yet I went to bed not overly concerned that night. I awoke in the morning to my dad waiting in the kitchen with some news. He told me that mom was in the hospital at NIH, the clinical center, and then he described the situation. He was sleeping and rolled over and touched my mom and was alarmed by the feel of her skin, he opened his eyes and what he essentially saw was a burn patient lying next to him in bed, although there had been no fire! I skipped school that day, I really did not care about that and went straight to the hospital, I immediately became scared because I could tell that the floor I was on was for very very bad things. I had to put on a gown and gloves and head and face covering. I went in and was heart broken when I saw a person suffering who looked nothing like my mom, but I knew it was her. I could not breathe, I stayed, even as adults could not deal with it. My mom was in bad shape, disfigured and I did not know why!! My younger brother quietly lost his mind over it for a while and had to stay away. Mom had to stay on a special burn bed for a long time, she had to endure torture. Even now when I think about this period of time, I just have to cry and my heart sinks. For the very longest time, it seems as though I could not find out anything about SJS, this happened in the 80's. I tried to describe it to some people and they looked at me like I was crazy. I am glad to know that there is a place where I can learn more about it. More than 2 decades have passed, I am grown and have a child of my own. While I of course have moved on and function quite well, I will never ever erase that picture in my mind of my mom in the burn bed, nor will I quite get over it. I miss you mom and I am sorry that you had to endure that kind of pain, no one should ever have to deal with that, nothing can possibly be worse, having witnessed it, I really don't think so. That is the story of my mother, Phyllis, who I will never ever forget, not even for one single day.

Name :: Andrew Soakell

Story :: I developed this skin condition - painfull swelling of face, hands and areas of my body. I was itching and rash like and it seemed to grow or spread. At the time I did not know what was causing the condition and went to see my GP. It rapidly became worse and included very swollen eyelids - like severe bruising - akin to having been in a bad car crash or assaulted. My GP was not sure but suggested I was allergic to something and possibly stress related -50/50 was his view. He refered me to a skin specialist with a german name who comes around our county twice a year. It did not look good. At the time I had dabbled in using heroin, I was unhappy and struggling with life and debts etc. The specialist confirmed the same as my GP and said 'see you if the condition worstens'. My GP prescribed anti-allergenic and antibiotic tablets and I stopped using the barbituates. My condition slowly abated.
Unfortunately I had by this time triggered an addiction and about a year after this event I was using Heroin again, smoking on a daily basis and chemically dependant. The Johnsons was back and this time much worse. I was horrified that I had not learned my lesson first time and was fearful that I would not survive. I went to see my GP again and this time was open about my drug use. He was matter of fact and asked me what I would like to do about it.again my GP prescribed anti-allergenic and antibiotic tablets and I stopped using the barbituates. I was very beaten and asked for the assistance of the local drug action team. I registered myself as addicted and was prescribed a detoxification with opioids for 11 days as well as some form of 12 step support. Very much relieved of my secret addiction and the company of others I began to get well again. I continue to treat the addiction daily with spiritual therapy and a support network of fellow sufferers. Today I am 13 months opiate free and Johnsons has not returned, despite all the problems I thought were so terrible that may have caused my condition still being there. I hope my story offers some hope to others in this condition.

Name :: Ian Email_address :: icohen82@gmail.com

Story :: I was seeing an alternative doctor who also specialized in acupuncture for a sinus condition. He gave me two injections in my ankles and a bottle of Chinese herbs (anti-fungals). After taking the herbs for a day or two, I noticed a rash on my wrist. I thought it was because of the heavy, woolen sweater I was wearing and continued to take the pills. In a few hours, I was covered in red spots. The next morning, I had a temperature 104 and could barely walk. I took a cab to the hospital. They gave me heavy doses of prednisone, the rash disappeared and I went home. That night, the rash reappeared. I went back to the hospital and they gave me another heavy dose of prednisone. Again, the rash went away and I was to be released in the morning. On release, an intern noticed that there were some spots in my mouth. They ordered a specialist, I was "diagnosed" with Stevens Johnson's disease (though they weren't sure) and again was pumped full of massive doses of prednisone. I recovered and have not had another bout with this.

I only recently found out how serious this condition is. I would be happy to hear from others who've had a similar experience.

Name :: Liz Maraver Email_address :: liz_enjoy@hotmail.com

Story :: I'm single mother or Iwas until my son Alejandro with 4 years old go to heaven the last January 25, 2008. Ileave in Loreto, Baja California Sur and we don't have the proper especialist and neither the knowledge of this allegic disease my family and I spend 1 week in La Paz, capital of the estate; but they didn't know what my son's desease so I take my son to a best hospital in Guadalajara city and there we spend 2 more weeks with a lot of doctors especially with the infections specialist it wasn't easy to saw my son tub (and soothed due the tub) when his heart doesn't resist anymore. But the doctors never knew about a cure or treatment...there's no information in MEXICO for this mortal allergy? because it seems that they give up. Nowadays I'm trying to found a support for let other citizens know about this disease.

(Sorry I do my best because, I don't write very well...but I'll really apprecciate if you can contact me) In loving memory of my son Alex!
Thank you, Liz Maraver

Name :: jimmy Email_address :: vw6jp@terminalconfession.com

Story :: ok so i did have s&j and it was horrible.... it happen when i was a senior in high school. i just turned 18 and went out and got a tattoo so 2 days later i started feeling siick so my mom took me to the dr and he said that i had a flu so he gave me zithromax and sent me home..then i stayed home from school, soi was home alone my mom wasat work and my sisterand my girlfriend were at school. it was late in the afternoon and i calledmy mom at work and told her that it was hard to breath and my hands and my feet were red. she told me to just lay down and get some rest. so i did forlike 10min and i called her back and she said that she will call the dr. so she called me back and said that she willcome home and take me to the emergency room that the dr wasnt in. so she came home and took me...... when i got there the looked overme and said i was having an allergic reaction tomy medication i was on the zithromax and medication for depresion so he told me to stop taking the zithromax and he gave me 5 steroids and sentme home. so that night i went out with my girlfriend cuz i was feeling alot better. i went tobed that night..the next day i woke up and i couldnt breath again so my mom took me back up to the er room and they said i am having a bad reaction to the medication to stop taking all the meds, and they gaveme a shot of the steroids in my butt witch didnt feel good. i went home and took a nap and when i woke up i really couldnt breath and my tattoo, eyes, hands, feet were as red as apples my mom said. she she said that we have get up to the er room asap... so when i got back up there the drs were thinking what can i have. they said to mymom that they think i have s&j my mom and i were so confused wht tht was so they explained it tous and said that they couldnt treat me at that haspital that they dont have a burn unit. the life support van wouldnt be there forlike 45min. so my breathing was getting worst so they kept pumping me ujp with morphine . another dr came in andasked if he could takepipctures of me cuz they have never seen this at that point i really didnt care what they did i was in somuch pain.. when life suport ambulance got there they hookedmeup to all these machine and transfered me to another hospital. that hospital was so busy they had to putme in the hall way so i am laying in the hall way and only 2 peoiple were aloud there at a time and i wanted to see my girlfriend and she wasnt aloud back... so whn i was laying there a nurse came over to draw blood and couldnt hit my vain so i was mad, she said it would be the last time.. 3 min later she came back and needed more blood but out of my pulse so she feltfor tht and stuck i needle in it and dug around so after she did that all the dr were talking tommy parents and they said that my throught was closing tht they need to take me to intabate me so they took me in a room on the burn floor and had every one inmy family come in by 2 all dressedin surgery stuff to say by to me... then the dr said to count to 10 so i got up to 4 and i dont remember wht happen for the next 4 days...... i woke up in a room at 3 am and saw a nurse in a window so i got on the phine and calledmy sister but i dont remember wht i said and she couldnt make out wht i said. so after i hung up i started to pick off all this stuff off my tounge and my lips and i was bleeding so bad so the nurse ruched in and told meto stop then she said that i need a shower so shetook me to get a shower that was scary.... 2 days later i went home on morphine and i had to go to a eye dr cuz i had blisters in my eyes.i i had to check in with drs every day. whn i wentto the eye dr the first thing he said to me was "do you believe in angels" i looked at my mom like this guy is nuts so he said"you better cuz u had one good angel looking after you all the people i see that had this is blind right now" i had to go see him every day i had to put tearsin myeyes and evey thing for aq long time....... i had scabsallovermylips the dr said if i didnt havemy tounge ring in my tounge would have swelledso much that i wouldnt have been able to breath..... soit was june whn it happenedandi was going tograduate but they said that i couldnt cuz i failed allmyclasses cuzi missedthelastmonth and a half ofschool so my mom said to them that i would not go back to another year and they said it was fine to let me so i got to walk down on graduation thatr was great i can say so much more but it was hard to writethis if any one has any question they can email me at vw6jp@terminalconfession.com it has changed my life so much

Name :: Kevin Kernd Email_address :: kkerns12@yahoo.com

Story :: I will try to keep it short and sweet1

Age 5- I had an upper respiratory infection and was given sulfa drugs to control the infection. after a few days of being on the meds I had a temp of 105 and was rushed to A.I. Dupont Childrens Hospital in Delaware. I had blisters and burns all over my body. They covered me entirely head-to-toe, face, back, chest, legs, mouth, feet, hands, throat, anus, buttocks you name it and it was their. once discharged from the hospital 2wks later I miraculously had "Asthma" I was treated as an Asthmatic for atleast another 5-6yrs. My parents then searched for a Pulmonary Specialist. Luckily a very good one was in Philadelphia. She was the 3rd specialist I went to and the 1st one who actually was able to give me some answers. It was then explained to me that I had a very rare lung disease called Bronchiolitis Oblideran. Due to this disease I was placed on the lung transplant list and was also told I had only 2yrs to live. This completely tore my family apart as well as my personal feelings. I was a high school student and I was depressed so much that i became home schooled and my mother ended up turning to drugs which to this day she is highly addicted to. Her drug addiction eventually tore my entire family apart! Appy 1 1/2 yrs after being placed onto the transplant list I was called in to receive a transplant. After several hours in the ICU waiting on the lungs the Chief of Surgery notified me that I was no longer in need of a transplant and they would actually be taking me off of the list. The staff at the Children's Hospital of Philadelphia felt that the damage that was done to my lungs was no longer going to progress. Well now 7yrs after being told I only had 2yrs to live I feel great. I have a family of my own and actually I work for the Childrens Hospital of Philadelphia. Just remember a POSITIVE ATTITUDE is better then any medicine that you could ever be given. I am living proof of that. Even when I was depressed and on 18 differnt medications I still kept a positive attitude and hoped for the best. If I did it then so can you!

Name :: diana Email_address :: arandia_men@yahoo.com.ar

Story :: hola soy la mama de ezequiel pag 11 hoy ezequiel vive gracias a la fe y esperanza, en argentina no se si existe sobreviviente alguno de esta enfermedad lo vieron cerca de 900 doctores ninguno sabia que hacer a mi hijo lo ultimo que le diagnosticaron fue fibrosis quistica pulmonar el pulmon derecho no funcionaba a causa de sjs que tuvo a los 3 a�ito y se broto 6 veces las maceraciones internas le da�o la parte respiratoria hoy goza de una extraordinaria salud tiene 14 a�os y ya hace 3 que no sufre de neumonias y 3 a�os que se normalizaron los analisis y los globulos blancos bajaron despues de 7 a�os de 29.000 a valores normales es un milagro y la gente de este pais no le daba vida ,siempre lo sacaban de las neumonias con cefurox . nadie me ayudo solo me decian que me resigne sufri la barbaridad de lo no profesional de no atenderme al nene ya que con el diagnostico no se hacian responsable no tuvo un medico de cabezera todos me lo negaban , hoy el podria ser tal vez la cura para los que padecen y sufren como sufrio el quedando desfigurado totalmente y con el cuerpo completamente quemado con ampollas arrastrandose sin poder caminar, el no fue atendido como correspondia estuvo internado 5 dias lo curaba en casa su piel y carne se le caian ,agujeros tenia en todo el cuerpito supuraba y sangraba con fiebre 39.9 hoy esta todo regenerado no le quedaron secuelas gracias a dios les cuento que lo que mas me asombro fue que cuando tenia los pies abiertos el no caminaba y una noche me levante y no estaba al lado mio el dormia conmigo y su piel quedaba todas las noche en las sabanas pegadas corri por mi departamento el temia a la obscuridad y alli estaba paradito como si estiviera flotando le dije eze y no volteo prendi la luz de donde estaba y lo samarrie me asusto le pregunte que haces solito en tu habitacion me respondio estoy hablando con mi amigo solo tenia 3 a�itos obviamente no habia nadie , pence que deliraba por estar tan mal ya que su aliento apenas se sentia , los 3 meses fui con mi bebe a visitar a mi mama y en la entrada tenia una imagen del sagrado corazon de jesus y el con los ojitos brillantes me lo se�alo y me dijo ese es mi amigo ...cada vez que lo recuerdo me digo a mi misma cuando todos me cerraban la puerta jesus me abrio la puerta de fe y esperanza estoy convencida fue un milagro gracias

Name :: Sandie Zurcher Email_address :: stzurcher@yahoo.com

Story :: My husband Tom has recurrent penile cancer. In February he was hospitaized for the rash, fever, nausea and vomiting which was thought to be a reaction to chemotherapy and put on Septra/Backstra (sulfer antibotic). With the dosage of chemo cut in half, March treatment was without incident. April brought another story. Tom's entire body was covered in blood blisters, blackened scabs, skin falling off. We almost lost him. It took the courage of a great nurse to speak with the Dr about SJ syndrome. After 3 weeks of hospitalization, he was released to go home. 10 days later, he was back in the hospital with a milder form. This is a nasty disease. Thank you for your web site and available information.

Name :: andrew white Email_address :: andrewwhite25@yahoo.com

Story :: My name is andrew and i am 22 and from northern ireland. I was told i had sjs when i was about 15 after 10 years of not knowing what was wrong with me. It all began when i was about 5, the skin on my lips would just fall off and take around a month to heal with constant bleeding which happened for at least twice a year until i was about 7 or 8 with constant unexplained reason for it happening and just always given antibiotics. It stopped for around 2 years and suddenly it was back, but it wasnt my lips this time it was my mouth, the entire skin in my mouth and tongue would just fall off and this again would happen 2 or 3 times a year and last for about a month putting me in a lot of pain and unable to eat. By this stage my doctor was baffled and confused as to what it was and what was causing it but no test were done and again i was just given antibiotics everytime it occured and this went on until i was 15 and this time it got worse. This time it wasnt only my mouth that lost its skin but most of my body starting getting ulcers and and blisters. By now my mum was fed up or not getting any answers to what it was and took me straight to hospital. When i arrived at the hospital they couldnt believe how bad my body looked and admitted me into a room of my own as they were afraid i could pass it on. I spent the next 3 weeks in hospital getting all kinds of test done until they diagnoised it as sjs with no answers to how and why it was happening. in fact the doctor admitted at the time that he had never heard of it before but tests and research showed that it was sjs. Since then i have never had any of those symtoms agian, but about 5 years later when i was 20 about 2 years ago i got sick again but this time it was my bones that were affected, they would get cold and sore on my right hand side of my body from top to bottom which happend about twice a year and is still happening now, it would give me flu like symtoms that lasts for about 2 weeks and my eyes would get affected aswell. It wasnt until it happened again last week that the hospital said that it could well be sjs that is causing it. In all the time i have had it i have never new anybody else with it or had a doctor that really new much about it and have always wanted to share my story with people who have been affected by it and see if my story matches others. just like to say thanks for reading my story.

Name :: Tanja Dierre Gregory Email_address :: dragonprincesstg@yahoo.com

Story :: i was 9 and i got sjs . i live in a small twon called berling N.H. and the avh did not know what i had so they call my docter and he know some things about it but not anof so he sent me to hanover N.H. MY MOM AND DAD THOUGH I WAS GOING TO DIE AND I WAS SO SKARED. ALL I WANT FROM THIS E MILE IT SO SEE IF WE CAN DO SOME THING TO LET PEOPLE KNOW ABOUT THIS WE KNOW MORE ABOUT CANSER.

THANKY YOU . TANJA DIERRE GREGORRY

Name :: Portia Email_address :: Portia_harris@sbcglobal.net

Story :: Hi my name is Portia I am a 24 year old female from Grandview Mo I was told 2 weeks ago that I had sjs at first Ithought I had pink eye but the pink eyey was so severe I couldn't go to work and eye dropws did not help. I went to the er where they told me that i was just having an allergic reaction but no test were rub or anything the next day on a thurs i got up and My lips were severely swollen went to to the doctor and she said I have some kind of virus. As the day progressed i got worst and worst so i went back to the er were They sd once again it's just an allergic reaction at this time i had spots on my arms and hands so that friday i woke up and could not close my mouth and my lips were so swollen they began to bust I went to a differnet hospital where i was admitted for a week but by this time I could not swallow and i could hardley walk after being in the hospital for a week I was a little better but still could not see and had not ate in 2 weeks but they sent me home after a week. I went to the doctor that monday after i got out the hospital and we went over my er paperwork to find that the 2nd time we went to the er they diagnozed me but did not tell me what they came up with nor did they try to treat it. at this time my lkips started to bust open agaiin I still had not eaten I lost 31 pounds in less than a week my doctor put me in a different hospital where they got me more back on my feet as i am i writing this i am still in the healing stage so if there are typos i'm sorry but my site is not back all the way but I thought it was important that I can share my story and my prayers with people who know what it's like to have sjs

Name :: Ursula Parker Email_address :: parkeru@pcsb.org

Story :: It started with a Sinus Infection on February 1, 1998. I was the happiest person in the world , because I had a husband of 2 years and a newborn baby boy. I felt a little bad, but not out of the norm, this day. Because I get sinus infections on a regular basis, I did not think much of it. It was so bad this time I had to go to the ER for it. Aftrer going to the ER in my town, I was sent home with 3 perscriptions to take. I took them for 4 hours and I was rushed back to the ER. This time I had what look like skin rashes all over my face and back. This is what I was told, becuase for some reason I could not see. After waiting in the ER for hours of them trying to find out what this was I was sent to the burn unit at Tampa General Hospital in Tampa Fl. This was worse than the pain I had experienced in child birth a few months earlier. I spent several weeks there. Finellay upon discharge I went home and my life was changed! My skin was aweful, my hair fell out, my mouth was bleeding, my lips were coming apart, and everthing that could be dry was dry. For 18 months I had to stay at home. II lost my job, I had to qput college on hold and basically quit my life. It was hard to go into public. I had to under go several procedures due to the disease. I was ashame of my new face and body. Eventhough alot of the skin repaired itself, I looked different. I felt different. My self esteem was low and being a counselor I knew the signs of depression and that was where I was heading. Finally I picked myself up and began to live again. My husband who was with me through it all was very supportative and kind. I fineally got back into the workforce and I actually changed careers. I'm now a middle school teacher. I love life. I still struggle with my eyss they are extremely dry, and I have to ue bandage lens to protect the corneas. Through this accident, I feel stronger!
Please let me know if I can help you to overcome the rough times.
Sincerely, Ursula

Name :: Greg campbell Email_address :: lacgac1@live.com

Story :: Hello, my name is Greg Campbell and for the past seven years I have been treated for every thing from chemical burns to herpies. untill I had a break out that sent me to the Natchitoches Parish Medical Center and was seen by a Dr. from over seas. he asked me some questions and looked me over and left. Soon he come back and toald me i had SJS. I just broke down and cried because i finealy had a anser to my painful problem that had been going on for seven years.
And all this time it was med that was perscribed to me for my headaches and antiimflamintory for my joint pain.

Name :: Meagan Email_address :: spunky_bumchild@yahoo.com

Story :: I was in first or second grade and became extremely ill. I really didn't feel too sick in the beginning but was covered with this odd rash. I went to my pediatrician and was forced to wait outside. Immediately after entering the exam room, I was rushed to the hospital and admitted immediately. I was told that I had SJS. Of course I didn't understand the full effects of the disease at the time, but it became apparent when my skin blistered and I was forced to take painful medication baths. A day or two after entering the hospital, I developed pneumonia along with being severely hydrated. After a few painful days in the hospital, I was released to my mother's care. Before I left, the doctors and my mother spent hours and hours going through everything I had eaten and touched, and never did they conclude what caused my SJS. Unfortunately, as a result I now have asthma and have developed several secondary skin infections including MRSA and cellulitus. If anyone reading this has SJS or knows someone who has fallen victim, I would like you all to know that you can get passed it and continue on just like before. I wish you all the best of luck and god health.

Name :: Gary Koide Email_address :: gkoide@san.rr.com

Story :: Hi,

A word of caution for those involved clinical trials. In August or September of 1998, I was in a research study for antidepressants. I don�t know if I was taking a placebo or not though it is my strong impression that I was not. Weeks into the study I developed a fever which would not go away. The following records from my doctor document how that fever became Stevens Johnson Syndrome. However after everything I was never told the name of the experimental drug I was taking. Now ten years later I am in search of the name of the drug that may have caused the outbreak in the first place. It terrifies me that this drug may have made it to the market without any warning label. Childrens Motrin I believe has been linked to sixty cases of SJS yet the FDA did not force them to disclose that it causes this horrible disease because it was not a significant enough number of cases. So now I am in search of the cause of my Stevens Johnsons Syndrome, however the institute that conducted the study themselves do not know the name of the drug because they say it was a double blind study and only the manufacturer knows. . I don�t know if it made it to the market, so there is always the chance that I or a family member may take it again in one form or another. So please be very careful when signing consent and participating in these studies. Should you suffer medical problems you may have a long hard fight ahead. If anyone has any advice please contact me.

Gary Koide
2443 La Marque St.
San Diego, CA 92109
858-273-2783
619-306-8030 cell
mkoide@san.rr.com

October 13, 1998

FIRST EVALUATION - GARY KOIDE
CHIEF COMPLAINT

Skin rash.

The patient is an Asian male in his late 20's who notes he was essentially well. He was living at home and working when he got what appears to have been some sort of febrile illness. He got feverish with arthralgia. His fever was up to '101 to 102 degrees. He did not note any signs of meningitis, visual problems or ulceration in his mouth. He had no cough, excessive mucus, penile discharge or change in his bowel habits. He did feel significantly ill, however. This persisted. He started taking Coricidin and aspirin over-the-counter for relief from the fever about five days later after the onset. There was no history of any new sexual contact, other infectious disease, exposure to hepatitis, Mycoplasma pneumonia or other problems. About five days later he started experiencing swelling of the face with a feeling of pain in his mouth and throat with puffiness of the eyes. He went to his doctor who thought he might be having an allergic reaction or a cellulitis and gave him some antibiotics. The next day he had severe ocular symptoms with pain. He was seen in the emergency room and treated with antibiotic. Two days later he was even more ill with a diffuse skin rash, blistering of his mouth and severe problems in his vision. He was seen by an ophthalmologist who correctly diagnosed Stevens-Johnson syndrome with corneal ulcers. I was contacted by phone on an urgent basis and we started him on steroids. This morning his complaints are similar. They have not evolved any further. He has had no black stools, bowel complaints or pulmonary disease and his skin has stabilized. There is no further blistering.

His general health is good. He exercises reasonably. He works hard. He does not smoke or drink.

PAST MEDICAL AND SURGICAL HISTORY

Not remarkable for any disease. FIRST EVALUATION
Re: Gary Koide
October 13, 1998
Page 2
'REVIEW OF SYSTEMS

Respiratory: As noted. Circulatory: Essentially negative at this time. Digestive: Negative, particularly bowel habits, stool color, etc. which is all normal. Genitourinary: Negative. He has not noticed any blood or change in his urine. Neurologic: Negative. He obviously feels ill but has had no focal neurologic problems. Special senses: In the present history. Allergies: The patient is an allergic person. He notes he has hay fever and some allergy to cat, etc. These are minor problems.

CURRENT MEDICATIONS

Steroids administered by myself and antibiotic eye drops.

FAMILY HISTORY

Significant in that his mother had meningitis from Motrin. There is no other family history of allergic problems.

PHYSICAL EXAMINATION

Reveals a normally built male who is obviously discomforted but gives a good history. He is lucid and oriented for time and space. Pulse is 70 and regular. His skin is covered with a diffuse rash which looks to me like a mild erythema multiforme or classical drug eruption with some vasculitis as he has obvious bleeding under the skin and skin damage on his shoulders but no blistering is noted. The rash is truncal and shoulders only. Eyes have clear-cut conjunctivitis. There is clearly puffiness. Mouth is full of blisters with some bleeding of the lips. This extends into the throat. Anterior neck is normal. There is no adenopathy. Parotids are normal. Thyroid is normal. Neck is supple. Heart size and sounds are normal. Lungs are normal. There is no adenopathy. Abdomen is soft. There is no obvious organomegaly. Lower extremities are essentially normal. Skin of the lower extremities is also normal.

LAB WORK

Mycoplasma titer and herpes titer. He had a CBC which I have not seen.
FIRST EVALUATION
Re: Gary Cody
October 13, 1998
Page 3

PLAN

High-dose steroids.

DIAGNOSIS

Stevens-Johnson syndrome, etiology unknown.

DISCUSSION

See covering letter to Dan Michaels. We spent some time talking to this family about this young man who, obviously, is critically ill. There are reports in the literature of steroid efficacy and outpatient management. I think given that he is not worsening we can watch him at home for the next few days. We will give him intravenous Medrol 125 mg today with 60 mg by mouth tomorrow and then 120 mg a day for the next few days to see how he does.

KOIDE, Gary 10/15/98

PROBLEM: Stevens-Johnson's syndrome. He is getting better. His lips are crusting now. He has no new lesions. His skin is healing but I think with significant damage. His eyes remain a major problem but apparently the corneal ulcers are healing. He is now left with a conjunctivitis. I certainly would not object to topical steroids. We are going to taper him off the steroid in the next three days. He will follow-up with me if there is any reversal of this. It turns out he was on a drug study. The drug was unknown. He quit it when he started getting the fever. I wonder whether this is just related to that medication since I am not coming up with anything other than that. We will, however, await his herpes and Mycoplasma titers. They are not back from the laboratory. I discussed this with him.

On brief examination his mouth, mucous membranes, etc. look better to me. There are no new lesions. Mouth and throat have essentially healed.

KOIDE, Gary 11/18/98

PROBLEM: Stevens-Johnson. He is totally healed now. He came in basically to discuss this with me. I reviewed his lab which is all negative. No infection documented. The drugs over the counter, incredibly safe, but clearly one of them bothered him. I simply cautioned him to be ultraconservative with aspirin, any other the counters. Warned him not to treat viral illness with antibiotics, etc. That is the best I can do for now. There is no way of being more specific here. He conceptualized this and we will follow along.

Name :: Corey Leamon Email_address :: cleamon@cox.net

Story :: Our son was 9 months old when he came down with a severe rash, diahrrea and liver failure after taking Amoxicillin for an ear infection. If we had known, we never would have given him the antibiotics because in May of '08, we took him to the hospital where a month later, he was in line for a liver transplant only to not make it in time and instead, he passed away due to severe brain damage brought on by acute liver failure. We believe our son had a severe reaction to Amoxicillin and now he's no longer with us.

His video can be seen at: http://www.youtube.com/watch?v=bKMJ4T2KZtw

I agree with your assessment that parents need to be much more vigilant about what medications to give their kids and to really be on the look out for a rash and the other symptoms you talk about.

Thanks for your site!

Name :: Shajuana Cicero Email_address :: shawn_swan0109@yahoo.com

Story :: My name is Shajuana Cicero. I was affected by SJS in 1996. It began a week after the birth of my son when my blood pressure sky-rocketed and caused me to have seizures. I was rushed by ambulance to the emergency room where I was given Dilantin by I.V. Upon being discharged from the hospital 4-days later I was given a prescription for Dilantin at a dosage of 100mg three times a day. My family was told by the Nerologist that if I were to have a reaction to the medication that a rash would appear below my knee or on my back. Two weeks later this proved not to be true. I had developed a red raised rash covering my entire face. We contacted the doctor and he again said "if it didn't start below her knee or on her back, then it's not the Dilantin". I proceeded to try and lead a normal life for the next week as the rash continued to spread covering about 70% of my body. Because I had a newborn and complication directly after his birth there was a nurse who visted me and my baby twice a week. She had saw me three times since the rash originally started and had sent me to the E.R. each and every time. Only for me to be sent home time after time with the explanation or diagnosis of it had to be something new I ate or something new in the environment that surrounded me daily. Never the less about 8 injections each time I was sent home. That is until the fourth time ,since the rash had began,my visting nurse came to see me. I was in the bathtub, this is where I had began to spend about 90% of my days because it was the only way I got relife from the rash. My nurse, Ms. Deborah, took my temperature and it was 105. She was noticebly very concerned because also by this point I was unable to walk. I crawled back into the bathroom to finish drying off and get dressed; But when I wiped the towel across my face instead of just the water coming of my skin did also. I was horrfied. I imediatley called my mother at work and in a trembling tear soaked voice I said " Mom can you come home, my skin is coming off". My mother rush ed home she and Ms.Deborah put me in my mother's car to go back to the emergency room; But this time Ms.Deborah said" I'm going because their not sending her home again".I was emediately admitted to the hospital with a temp by this time of 107. The hospital had no clue as to what was wrong with me or how to treat me. By day three of my hospital stay, after numerous test and skin samples that were cut from my body, the red rash had become very dark hanging blisters. In fact my intire back had been one solid blister that had burst and now the skin was seperating in the middle and coming off in one whole sheet of skin leaving a raw pink surface. By day four after much begging from my frightened mother I was air lifted to a Burn Center about 100 miles away. Upon arrival there I was given enough morphine to render me unconsious. Then the doctors and nurses began to debrid the skin from my body and shave my head. I awaken briefly during this and grabbed the razor and threw it. I was in so much pain I begged them to just let me die. I was placed in the I.C.U bandaged from head to toe with a feeding tube up my nose. I was unable to speak or walk. My mother after arrival was told to make my funeral arrangments. After regaining herself she told them "NO"! "I'm not going to bury my child"." She's going to get better and walk out of here, get in my car and go home". She went on to say" God has already told me he is not going to take my child". The doctors followed with" Well if she surrvives she will be here from 1-4 months". I had to have my skin dibrided every day. This was pain I thought was never heard of. I would scream in agony, and sometimes even pass-out. The doctors began applying pig skin on me. Yes I said pig skin. It's because so much of my skin was gone they were affraid that I would get a server infection. The pig skin acted as my own until mine was healed underneath then it would fall off. Before long I was recovering at a surprising rate. They were all shocked. I began physical therapy to learn to walk again . I soon began eating food by mouth, even though painful I wanted to get that feeding tube out. My lips and the inside of my mouth were still very much raw. But I had a goal I was working towards. If I got well enough I would be moved from I.C.U and then I could see my newborn baby boy.! So I pushed myself even almost to the point of hurting myself at times. But it worked after 7 days in I.C.U I was moved to a regular room. My baby still could not come to my room but I could go down the hall to a steril room and see him, hold him, touch him. The first day my sister brought him to the hospital to see me I had just had my catheder removed. I was so excited I tried to hurry down the hall, white knuckling the hand rail to keep from falling, to see him. I was so overjoyed and had not yet regained full control over my bladder I wet all over my self. This didn't even bother me I wanted my baby! I want everyone who reads this to know how good God is, because in a total of 12 days I walked from a wheelchair to my mother's car and came home. It has been 11 years since SJS changed my life forever. Everyday is a different struggle for me because I am left with so many scars. Both physically and mentally. I cope with them all in numerous ways and with a the support of my loving family I manage well. My eyesight seems to worsen with each passing year and my eyes get so dry at times they hurt. I hate it when people stare at my scars. But God has blessed me to find a loving husband and I now have three beautiful boys. There's more but I feel I have told enough for now. I want to very much do something with my expierence with SJS. Maybe speak about it or just getting the awareness out about this diesease. I don't know hopefully I can do something. And by the way one of the photos in the SJS/TEN photos is of me.

Name :: Jennifer Email_address :: jennieyaniga@yahoo.com

Story :: My Aunt Linda Mattie of Savannah, Ga dies August 14, 2008 from SJS she had a reaction to a medicine while doing radiation treatments for lung cancer, she was only 61 and was just about to start Chemo treatments, then one day her hearing wasnt so good and then her eye sight wasnt so good and she woke up one morning with all these blisters all over her body, she went straight to the ER and was admitted, she never spoke again her voice was gone in a matter of hours. When my mother and I reached the hospital, were form Mississippi, she looked so bad she couln't see, talk or hear and her body was covered in blisters and scabs its was the hardest thing to see. She managed to lip say to my mother how screamed in her ear until my aunt heard her and knew she was there she mouthed she didn't want to die in a hospital. So the next day we brought her home under hospice care and the care of my mother who is a home health nurse and everyday we watched her get worst to the point the was getting no fluids she couldn' swallow. When we went in to check on her as we all did every 20 minutes or so she wasn't breathing she was gone, all I could was break down and hold my 10 month old son who was also there. I wanted her to meet him, he looks alot like her first son when he was that age and before she got sick she mentioned she would love to see him and hold him. She never got that chance. Until now my family never heard of SJS my mother whos been a nurse for years had to look it up in her medical book. I wonder why the diease is not mentioned more often. Me with a 10 month old would love to have known about this everytime I gave my son some tylenol or motrin i probley would of thought twice and only given if he truley needed it. I love my aunt and my heart is broken now that she is gone but I would love to become more involved in spreading the word about SJS and participate in charity events to raise awareness.

I Love Aunt Doll, Jennifer Yaniga

Name :: Latrisha Fall Email_address = heavensgift1217@aol.com

Story :: September 19, 2008 started out as a normal day. My husband Joshua was complaining his leg hurt. I noticed his leg had a small rash on it near his ankle and it was warm to the touch and slightly swollen. I took him to the Emergency room in our town after six hours the decided it was just a rash and sent him home with topical steroids. The steroids made it hurt even worse so we decided not to apply another treatment of them. September 20, Joshua woke up to his leg in severe pain the rash had spread up his leg and was starting to spread to the other leg. He had fluid filled blisters on his right leg the original leg. It was very swollen at this point and he was having trouble walking. I took him to the ER in the town over they are known for being a better hospital. Within twenty three minutes they admitted him. They immediately started him on four antibiotics one of them was Vancomycin. September 21, his kidneys shut down. His creatnine was at four his WBC at 29. I noticed his face and neck were red and warm to the touch. I mentioned this to the attending physician. They immediately took him off all anitbiotics and started him on a milder less effective antibiotic. September 23, his kidneys were improving and his creatnine was at a 2 now how WBC was at 35 however. He was showing no signs of improving in his legs. The "rash" had spread up to his thighs, not his right leg was covered in fluid filled blisters, his left leg was also getting blisters. He had gained 17 pounds of fluid. He was having trouble doing much without assistance. They decided to ship him to one of the top ten hospitals in the US. It was in Salt Lake nearly three hours away from me and the kids and our home. September 26, I went to Salt Lake to visit Joshua. I immediately noticed his face and neck were red again and and he had what appeared to be hives on his arm and back. I found out he was on Vancomycin again. I mentioned the rash to the Infectious Disease doctors. They finished the bag of Vancomycin which was double the dose they normally give people. Later that night they gave him a new antibiotic, it was too late the damage had already been done. Within two days he was covered in fluid filled blisters. The ones on his sides were the size of pancakes. His arms were unrecognizable. They were covered in blisters. The burn unit finally decided to take over his care as the other doctors were clueless as what to do. He was completely immobile by this point. He had gained over 40 pounds of fluid. His WBC was now at 72. His Pulse Ox was at 77 and his heart rate was 176. The burn unit decided to debreave all of the skin on his body except for his hands and face. They said his body had tried to burn the vancomycin out of his system from the inside out. It was like having second degree burns on 85% of his body. They did they debreavement and found blsiters in his throat, they decided to keep the ventilator in and put him in a drug induced coma for three days. About five days later he finally started showing improvement his WBC was down to 52, then 39, then 29, finally 17. The swelling had started ti decrease slowly and the new skin was growing back nicely. October 9, 2008 Joshua is finally able to come home. He can not walk without much assistance he needs to be bathed and his dead skin needs to be peeled off daily and rubbed down with elta. each day seems to be a better day. He is on so many medicines right now it seems like there is no end to it all. The swelling is still very bad but as long as he is lying down with his feet elevated it is not as bad. Soon this will be all over and we can go back to a different normal life. I am just blessed to have him home.

Name :: Agustin Betancourt Email_address :: absb1005@hotmail.com

Story :: My mother just died of the syndrome. She was a 75 year lady and was doing fine considering her age. She was prescribed this medication called Allopurinol that cause her a rash all over her body and there she was admitted to the emergency room and never came out, she was gone in nine days. The worst part of all this is that she was doing well and all of the sudden she is gone. Her condition to us was the worst one, she had first degree burns all over her body and to see her in this condition was very paintful for the entire family. We were helpless since we had no knowledge nor never heard of this syndrome. As we look information on it we realize that the doctors are using these medications without really explaining people the consequences and that's totally wrong. I know I can not bring my mother back but if a start informing and educating people about this we may make a difference.

Name :: Jonathan Jarrod Haynes Email_address :: jj_leary@hotmail.com

Story :: i was diagnosed with sjs and tens after 2 weeks of skin rashes and developing eye problems, i was 9 at the time and was moved immediately to great ormond street hospital London from here my life was changed. i was given the best help around and recovered after 7 agonising weeks, for all that are unlucky to have this i pray for you all and hope of a speedy recovery, after treatment i was given antibiotics, i now only suffer from dry eye syndrome. "do not lose hope" i pray for you all and all of your families.