Read SJS/TEN Stories, Page-19

Name :: mary ann town Email_address :: mwtown@hotmail.com

Story :: my name is mary ann town, I live in bowersville Ga.I am a survivor of this deadly and horrible disease, this happened to me round about may 1999. This problem started with my eyes itching and my lips itching also, the problem grew worst and by the time i got to the Doctor i was so sick until i could barely walk, my dr. had no clue of what was going on with me he just told my husband that it was severly serious, at one point at the doctors office i had a abcsee to form in my throat , i were surpose to have a trachotomy in my throat. by the time i was hospitalized my eyes was blood shot red my lip was broken out with ulcers inside and out. my skin was peeling this was one of the worst experiences in my life, i know for a fact that GOD is a healer, the doctors really didn't know what to do GOD had my life in his hands and i know the reason why i am live today is because of CHRIST.MY recovery from this process i consider myself to be a miracle the affects that i still have from this problem is that i have dryeye sydrome my vision is not very well but guess what i want complain.Iam now a Minster of the Gospel and i tell people every where i go about GOD healed me i am a living testimony all the other scars are gone. my prayers that people everywhere will trust god even in the worst of time may GOD forever bless you all.

Name :: Kathy McDaniel

Story :: I was admitted to the hospital just a month shy of my 4th birthday because I was having Febral convulsions. Within a 24 hour period I was given penicillin, phenobarbitol, and valium. Within 2 weeks I had a full blown case of SJS. I was the first textbook case of it in the central valley of California, so many doctors and students came to observe me. I don't remember a lot, and my mom has told me most of this information. I was one of the lucky ones (if you can call anyone with SJS lucky) in that I did not experience any long term ocular problems. They were concerned that I would be blind, not have eyelashes, etc. By the grace of God (and I know that to be what it was due to the thousands of prayers on my behalf across the country) the only long term problem that I had was as a result of the scarring to my lungs. I am officially a COPD person now, with what acts and sounds like a chronic bronchitis. I have had scar fluid that continues to accumulate in my lungs, and had to do purcussion and postural drainage until I was 18 years old. I still am susceptible to upper respiratory infections and bronchitis, but sound like I have a "smokers cough" even though I have never smoked.
My doctors have basically told me that I am "allergic" to all three medications that were given to me, although it is not clear which (if any) were the triggers. I am now married and have 2 children (another blessing, as they were afraid the internal scarring could have left me infertile). Oddly enough, my daughter has suffered minor allergic reactions to both penicillin, and the Sulfa drugs (Septra), so there may be a connection there?!
I came across your website as I was just told through a prayer chain that there was a 16 year old girl from my hometown who was just diagnosed. I am so glad that more knowledge is available. Blessedly, I was given a mother who scoured every medical textbook she could find and created her own "informational packet" to give to anyone who encountered the disease, as there was nothing at the time. Thank you for your time and attention to such a frightening disease. My husband and I own an independant review board that oversees the ethics involved in pharmaceutical research, and I am always listening to see if any SJS cases pop up in the clinical trials.
Thanks again!

Name :: shanda bennett Email_address :: MyBaByHaNnAh05@aol.com

Story :: My daughter hannah is 1 years old. I took hannah to a hospital cause she was fussing they told me hannah had an ear infection, they put hannah on ammoxicillian and told me to report with her physician in 3 days. I called hannah's dr. office and made an appointment when i took hannah in the dr said her ear infection had infected both ears now and her throat was infected. So, she decided that hannah's perscription of ammoxicillian wasn't working so, she switched hannah to ZITHROMAX i was told to give hannah it as soon as i filled it and to continue it for 5 days. At this piont i did what i was told . Then as the third day past hannah didnt seem better and now there had been a rash that had accured. I then took hannah back to the hospital and they said that hannah's ear infection had been token care of but, the coudnt figure out what was wrong with her now. They ran some test and her test all came back fine except for hannah's white blood cell count it was all the way at 35,000 when its only suppose to be at 15,000. The hospital put on roeseffin and told me they thought she had scarlet fever. They told me to report back at the same time i came the night before for another dose of roeseffin i did as i was told. They told me after words to report back to her physician. I made another appointment and the dr did more test and they came back fine. Then they gave her more roeseffin and her blood count went down to 17,500. The dr told us she will be fine give her mortin for at least 1 week every 6 hours. I had to bring hannah back to her physician cause she was still feeling under the weather. The doctor then ran more test it came back that hannah's blood count was back up to 32,000 so she wanted us to stay a little later to wait on some more test hannah's test all came back negitave. Then the dr came into the room and said she thinks she knows what's wrong with hannah. Then i was relieved i thought this was finally over and hannah would feel better. Come to find out hannah's dr had looked in some text books as we were waiting on the results and she found that hannah's symptoms were simular to steven jhonson's syndrome. When she told us her disgnoses of hannah having sjs we werent very sure what that was. She insured that it was fine and it was minor it will go away in 6 weeks. My finance and I got a call that we needed to look up sjs on the computer cause its not just something minor. So we did and read all the information and read stories looked at pictures though our daughter isnt as half as bad as some sjs victims she still has the disease and i have to see my daughter go through this at 1 years old due to a medication that was supposed to help her and it only made her more sick. She is the most important thing in our life's and is loved by alot of people to see her deal with this bad rash and sore throat (so bad to where she has lost so much weight is pathetic ) and she has a fever that comes and goes. She is always in pain and i dont think that its right for a 1 year old baby should have to suffer like this. No amount of money or lawsuit could ever make her life the same before she got sick she was such a happy baby and so so sweet never fused. Now she is fussy all day long i have let her walk around the house in just a diaper all day or else she will burn up so bad to were she wont to move. I know its not noone's fault i wish everyday it would have been me and not her. I would give anything to never of let this happen. Since the day she was born i have lived my life deticated to her. She is my life. I have a brother who is autistic and it is because of a vacine he got as a baby.. when this happen i was for sure i was gonna be so careful what i give or what dr's perscribe my child and look at what has happened! No matter what hannah is strong and i know my daughter she will pull through! I am gonna be taken hannah to University Of Michigan in Ann Arbor hopefully on tuesday and make sure she is doing okay in places not visible to the human eye. Im hoping that she will be fine she has only had it for 6 weeks (believe me a long and sad 6 weeks) so i will learn more on her problems and if and how she will recover. I want to thank anyone who reads this and would like people to please give my hope and care to those families and victims of sjs. I hope this all will end noone deserves this. my daughter is one years old its not right. i will update this later to let anyone who reads and wonders on her progress. Thank u all my heart goes out to u all.

Name :: Tami Watson Email_address :: tamiwatson1@hotmail.com

Story :: Thankyou so much for this web site. My first time seeing SJS was when my baby was 1 1/2 years old. Brody is a very healthy child and had a eye infection they gave him sulfs drops and within 3 hours when I changed his diaper he was covering in a rash. I took him to the doctor and the put him in the hospital over night and stopped the drops. When we got to the hospital the noticed he had a ear infection and started him on amoxicillan the next moning after some prednislone they sent us home. His cold got worse and I gave him some Benylin for his cough. When he went for his nap he was fine and when he woke up he was covered in spots. The chicken pox were going around our town and I thaught he had them, he started running a fever and the rash got worse the next day I was really woried and called our doctor 3 times sayng I thaught he had the chicken pox but it looked funny and was running a high fever and I wanted him or his nurse to take a look at him. He was too buisy to see him and just give him benadryl. We did this until the evening and at 11:00 I was so worried I call emergency and took him in. they gave him more prednislone and sent us home. The next day the rash was a small bit better. After his nap his eyes were swollen shut, his hands and feet were so swollen he could not walk and the rash was worse. I the rushed him to a different hospital 3 times during the next 3 days with no relief in site they kept saying we are doing all we can it id just a reaction. Finally on our third time at the hospital I saw a doctor I knew within a minute of his seeing my baby he said he has Stevens Johnsons and called a specialist and changed one med and increased the prednislone a lot. Within a day he was much better. Since then my son can't have sulfa amoxicillan or cough medicine. They say that they can't test him for wich one is the problem. Luckly he has't needed any thing sonce then and he is now a happy healthy 3 year old.
Tami

Name :: cherokee

Story :: I am so happy that I found this site! I am desperately seeking information...I was given Bextra for 2 herniated discs. I took it for just over a year, until they pulled it off the market. Almost as soon as I began taking it, I developed a very strange condition that is still happening. The first "blister" appeared on my bottom. I thought it was a pimple. It got bigger and bigger and more and more painful. I could not see< it because of it's location, but it got to a point where it was almost impossible to sit down. It finally popped and that is how I found out it was a blister. After it popped, the pain lessened as my skin began to peel away. Since then, these "blisters" continue to pop up. There is no pattern that I can figure out. They are all in the area of my bottom and groin. Every time I have one, I get a fever and feel "fluy", my hands and feet swell, and my eyes feel puffy and painful. This has been very hard for me because in all the years I've been married, I have never kept anything from my husband, but I was terified he would find out about these "blisters" and make me see a doctor. I have always been a very private person and the thought of telling anyone about them, or showing them to someone was enough to make me want to throw up. As I searched everywhere to get information on what may be happening to me, I became certain that it was herpes. I had myself convinced that my husband had cheated or still was cheating. So I did finally break down and go to a doctor. The doctor could not tell me what the blister was, but she did tell me what it wasn't, which was herpes or any other venerial desease. Just recently, I heard about SJS and heard some of the symptoms. As I research SJS, I am learning horrible things about it and still can't believe that I have it because all of the stories are so severe compared to mine. I have had rashes at times, but nowhere near the severity of what I have read. I have learned that SJS acts in different ways in different people, and the severity can be minor as well as so severe many have died. The story I just read about Gary made me realize there are in fact, some people out there that have had the same symptoms as me and they do come back without the use of any medications to cause them. Any information you can give me would be greatly appreciated. I now have a name for what may be happening, but I need more information before I go back to the doctor with it.

Name :: Melba Lajara Email_address :: melbalajara@onelinkpr.net

Story :: Last year one day in October I started feeling a genital itch and throught I had developed a case of vaginitis. Later that day the itching spread to my rectal area. I didn't think I had anything serious. The next day I woke up with conjungtivitis and a rash on my neck and chest. I had been taking Lamictal for 4 weeks, the starter pack that starts on a very low dose and increases over the first 4 weeks. That day I had taken my first full dosage. The psychiatrist had explained when I started using it, that the drug had to be taken like that, from small dose to larger to avoid itching and rash, so I thought that was it and that I had nothing more than a rash reaction to Lamictal and took some benadryl. It did not get better during the day and the eye infection had me worried and so many places were itching at once I had the incredible inspiration to go and see my dermatologist and the incredible luck that he accepted seeing me without an appointment.

I was very lucky to have a very good and experienced dermatologist who me with diagnosed Stevens Johnson at once. I have since heard many horror stories of people not knowing what they had for days and getting worse at a frightening speed. I was referred to the University hospital in Puerto Rico and was admitted that same evening and by that night, I had developed mouth lesions, and despite the IV with Benadryl the itching wouldnt go away. Everyone seemed terribly worried but it wasnt until I developed ulcers through every possible surface inside my mouth and lips that I thought I was in deep trouble.

As it turned out, I was very lucky and only remained in the hospital for 7 days and my skin rash did not get too bad and I was allowed to check out when the fever got down to almost normal. The worst were my eyes and my mouth. Pieces of skin, crust and pus would fall off my lips when I touched them. I could not eat for a week, even water hurt my mouth terribly) The eye infection was bad with lots of secretions. The mouth took almost two weeks to heal (the inside of my mouth was totally white, covered in sores and a membrane like skin on top of every surface). The true difficult part of the illness was the recovery, which was very slow. The disease really takes a toll on your overall health and I was weak for almost a month after my release from the hospital. I was warned never to take Lamictal again and not to take any drug associated with Stevens Johnson which covers most antiinfalmmatory drugs that I miss very much because I have back problems. It was never totally decided that it was Lamictal that triggered the SJS because I had taken one Celebrex two days before the symptoms developed. I had taken celebrex many times in the past with no adverse reaction, but I was advised not to take any anti inflammatory drugs again just in case. It is scary to think of getting it again, everyone seems to agree that the second time is much worse. I cannot believe that this disease is so little known outside the medical profession. I was lucky to have it diagnosed at once, but it is so unnecessary for so many people to get a very bad case or even die because no one recognizes the symptoms.

Name :: Brenda Thornton

Story :: I was a young Certified Registered Nurse Anesthetist with an eighteen month old baby when I was administered Rifampin upon being exposed to what I was told was Meningicoccal meningitis. Turned out it was strep, so no treatment was needed.

I took the first doses, which I really did not want to do, as Rifampin is a toxic drug, but I did not want to expose my toddler to it.

However, after taking the second dose, I awakened to find myself covered, and I do mean virtually covered with red, inflamed, urtegaria. Everywhere, and the itching was simply awful. Went to the doctor and he gave me steroids, bendaryl, something for the itching, and epinephrine, and sent me home, telling me it would clear. It did not.

Every time the epinephrine wore off, it would rebound, with a dash back to the ER. I couldn't eat or drink, and grew weaker and the skin was just unbearably tender. Finally, they decided I had to stay in the hospital, but it was full. I had to stay in the ER, being pumped full of epinephrine drip, steroids, Benadryl and other things, with IV's. I ran a fever, and began to have seizure-like behavior when the bed was touched.

They thought I had developed meningitis, but had not.

It was terrible. The pain in the tissue was awful, simply awful, and all the doctors were in to see me and they all claimed they hadn't seen anything like this, ever. Despite all these medications, I continued to have new lesions, had them in my mouth, my lungs rattled, and I had them in my vagina.

It took two weeks for them to begin to subside. I was lucky that not that many blistered and sloughed. It took a month, to be able to ween me off the meds and another two weeks before I returned to work.

Later, I discovered that the reaction had to be Stevens Jacobs, and recently, I broke out in a rash, and blisters and a couple of them sloughed, and we could not determine what could have caused it.

This was one of the worst things I have ever encountered in my life.

Name :: chris hogan

Story :: on 25 01 06 my 16 yr old son had a cold sore appear on his lip and as he has suffered from cold sores from being a small child we didnt think anything of this and he used the cream that he has always used(Blisteze).By29 01 06 luke was destressed as he said his mouth was sore inside and little blisters were appearing on his hands. I took him to the Doctors who said the cold sores had spread and gave him antibiotic tablets and cream.On 30 01 06 Luke was just getting worse,more blisters were appearing inside his mouth,hands,feet,he also hadnt eaten for three days and was now struggling to drink anytging because he was so sore.The blisters now look like targets on a dart board,i was told by the Dr that we had to give the antibiotics time to work.On 31 01 luke was a mess we went back to the Dr who got another Dr to come and look at Luke,she said it was sjs and had him admitted to hospital.I thought things would get better now but they just got worse.They never told me anything about this condition and were not concerned that he hadnt drank for three days they just kept telling him he had to try.On 01 02 06 he was in so much pain he couldnt speak,his hands and feet were so sore he could hold a pen or put his socks on,now hes on morphine for the pain.On 02 02 luke was sent home from hospital with a bottle of morphine and a diphlam spray.On 03 02 Lukes lips looked like raw liver we went back to hospital and asked to see a differnt Dr,who immediately had luke put on a drip for fluids and called in the dermotologist,they told what they could about sjs,he was given Betnovate c for blisters on his body,dermovate ointment for his lips,and a chlorhexidine gluconate mouthwash, Luke finally came home on 09 02.The dermotologist has put him on a six month course of Aciclovir to keep the HSV at bay.Now i worry will he get this sjs again when he comes off the Aciclovir.Luke is doing good now he put all his weight back on but is still scarred.My heart goes out to all sjs sufferers and their families too.

Name :: jane roe

Story :: last fall my husband david started his latest drug for chronic pain. this was cabamazipine. after a week or so he was unwell but as we live in england, we suspected yet another fall bug! david was so depressed at the time that he was prescribed a new antidepressant sertraline. that day, he became increasingly ill, and dissorientated, and a nasty angry, scarlet rash appeared, first on his torso, then legs then his whole head and face. it was a nightmare andwe rushed to our gp, who was really not that bothered, and just said it was a slight reaction to 'something', but nothing to worry about! dave was told to take antihystermines and rest-advice that could have put him in serious danger - still noone had considered sjs- its just not known over here. luckily we didnt take this as red and we reserched carbamazipine-dave had every single symptom!

we saw 2 other gps, but even they didnt know what it was ! finally after a blood test, which showed liver damage, and after seeing a dermatologist, we were finally listened to and sjs was named as the cause. we are furious. david was seriously ill and could have died. he has lost three stone, has no appitite, his eyesight is deteriorating, and can no longer stand to be out in even our weak sunlight. at just 40 years old, my gorgeous, strong, wonderful husband has been turned in to an old man, but at least hes still alive. love and best wishes to you all, jane david, and boys.

Name :: Christine Brown

Story :: I am a recovered steven johnson syndrone patient. On january 26, 2003. I complained of fever and sore throat for three days and was treated at the( kingston publc hospital north street kingston jamaica west indies 922-0210 senior medical officer at hospital Doctor trevor MCartney922-3837). I was given amoxil,pandol,sudfed cough syrup after taking the drug on friday evening january 26, 2003 that night was very difficult for me i was up all night . I was not in pain but i knew something awful was about to happen. On saturday morning I had such a strange feeling in my body i thought i was going to have a breakdown.My skin felt like it was crawling and i had the fever and was nauseous. I got worse and worse and my skin began to peel off and it has rashes as well. I really thought i would die from these pains no one can understand these pains unless they went through it. That night was the worse night of my life i was admitted at the hospital where the doctors treated me very poorly and gave me the impression that they did not believe what i was telling them.I receive burns to my back,upper limb,Adomen,face,chest. I am alive now but what a mess my life is in, my condition has not been addressed in the humane and understanding manner required.I have dryness of eyes at present which doctor say is serious and permanent. I am unable to get ant compensation from the government in jamaic.I can be contacted for fincial assistance@1876-353-2749 or 1876-874-0780 (cellular)1876-756-3000(landline) Address-Brooks Level Road Stony Hill P.O. St Andrew, Kingston 9 Jamaica West Indies. Iam also diagnose with phonmonia,bronchitis as a result of my seriou reaction, iam now dependent on artfical tears to keep my eyes moist Restasis,Genteal,naturale tears forte,naturale tears 11.I am seeking assistance with tears mt tear glands are demaged.

Name :: Cyndi White

Story :: Last winter, our 12-year-old son developed chest congestion and a deep cough that was impossible to quiet, but no fever. After treating him with OTC cough/cold remedies for a couple of days with no improvement, I took him to the doctor who prescribed Biaxin XL, 500 mg., twice daily. (My son is 5'5", 155 lbs.). Knowing he had previous allergic reactions to Keflex, I was cautious about giving him a new antibiotic. The first day, I gave him only one-half of the recommended dosage and monitored him closely for other symptoms. The next morning, his lips were a bit swollen and he was complaining of some blister-like sores inside his mouth but his braces had just been adjusted and were also causing him some discomfort. Since I had heard reports of several cases of pneumonia at school, I gave him another tablet on the second day. When he came out of school that afternoon, his lips were very red and he complained of great pain in his mouth. He was also developing a rash on his bottom. Thinking these new symptoms could be caused by the antibiotic, I gave him no more and called his doctor to request a change in medication. His doctor switched him to Augmentin which he tolerated well. By the third day, his lips began to peel (like sunburn) and the redness with tiny blisters had spread beyond his lips to the area surrounding his mouth. I think that almost two weeks passed before the rash finally disappeared.

Until today, I thought the rash around his mouth could have been caused by a bacterial infection because my son plays the trombone and has a habit of scratching irritated areas like the impetigo he had on his mouth a few years ago. This is what changed my mind.....

Last week, (Good Friday), I developed symptoms of a urinary tract infection. Being a holiday weekend and thinking I would not be able to get an appointment to see a doctor until the following week, I took one of my son's Biaxin tablets to "hold me over" until Monday. On Saturday, I took another one. By Sunday morning, my lips were swollen and very sore, and I felt very warm. Remembering my son's symptoms and considering the fact that we share some sensitivities, I decided that I was reacting to the Biaxin so I stopped taking them. By Monday morning, my lips were not only swollen and sore but beginning to peel as though they had been burned! I went to the doctor today and was given a prescription for Bactrim (for a urinary infection). Upon reading the fact sheet that came with the medication, I was fortunate enough to learn about SJS. I am thankful for the information on this website! The education I received this evening about SJS could have saved our lives.

Name :: Rosanna Mancino

Story :: Hi, My name is Rosanna Mancino, me and my family are Americans and we are actually living in Quito-Ecuador, South America. My little boy Manuel (14 months) received de chickenpox vaccine (varilix glaxo) on December the 12. 24 days later, he started with flu symptoms. He was given Ventolin and Clarytine D but the symptoms continued and his face and body started swelling and a rash started to appear in his neck, arms and legs. On the 3rd of January of 2006 he entered to ICU diagnosed with Stevens Johnson Syndrome. He spend 10 days in the burn unit. These were long days and were very hard for me and my family to see the pain our little angel was going through. We were desperate and full of sadness and questions.
Thanks to my pediatrician who reached a diagnosis very quickly he was given IVIG (immunoglobulin treatment) immediately. We were relieved because this treatment was a success in treating SJS in our baby. It seems to have shortened the course and limited the side-effects.
Thank God he is now a happy baby again. His eyes are perfect and as far as we know there are no sequels. Me and my husband are now learning to cope with the fear that this can happen again to our little Manuel.

Do you know anybody else who has SJS because the chickenpox vaccine or any other vaccine? I don�t know if it is a good idea to continue with the vaccination program with Manuel. I want to thank you so much for all the information and support that we found on your web page, I am always praying for those who have to go trough the horror of SJS.

Name :: Gloria Lazzari Email_address :: aplusnotary@gmail.com

Story :: September 1979, just around Labor Day I developed a urinary tract infection. The Friday of Labor Day weekend, I saw a doctor and he perscribed an antibiotic, Septra, for the whole week I just about finished all the medication, except for two pills. That day was September 14, 1979. why I know this so well is that it was my baby sister's birthday. I had asked my husband, then boyfriend, to drop me off at my parents house. Through out the week I had been feeling very thursty and lack of appetite. I thought it was due to the fires going on in the foothills. Plus on that Friday, I had been working very close to the foothills, in Sierra Madre. At lunch time I had an interview at JPL in La Canada. I completed the interview and was going to start working at JPL that Monday. Upon leaving JPL I was driving and my eyes became blurry. It was really getting bad while I was driving. I decided to go to my apartment and call the place I was working and let them know that I was having trouble driving, due to my blurry eyes. I waited until my husband got off work and drove me to my parents house in Monrovia. While I was there, I went to the restroom to check the inside of my mouth. I felt some kind of blisters and when I checked inside there were clear. But just a short time later that evening I went and checked them again. At that time, they became blood blisters. My mother suggested to take me to the ER. At that time the ER's were becoming over filled, due to the fires in the foothills. We were re-routed to another hospital in Arcadia. There they checked me out and perscribed some eye ointment. When I got off the bed to get my clothing back on, I noticed that there was blood on the bed. I thought I was on my period, so I went to the bathroom and checked, but I wasn't on my period. I informed the nurse and they didn't care to check into it. I went home with my mother and woke up the next morning. Upon taking a shower I felt really tried and the water on my skin was very sensitive. When my mother came back from work I had developed spots on my hands and my lips were swollen. My mother then rushed my to the ER at the first hospital that turned us away the night before. At that time I really broke out. They admitted me and that's when everything happened. They rolled me to a room and administered pain medication. Shortly after I was placed in a room, they brought in a Priest. He was giving my last rights, althought I couldn't hear him. It was like I was watching a movie. Some time past and they moved me to another room closer to the nurses's statiion. I developed blisters all over my body and inside. They called Dr Hathout, cardiologist specialist from Loma Linda, to be my doctor. This was because all my inside organs, especially my heart, had blistered. That same day that I was admitted, they thought I wasn't going to make it. I became blind due to the blisters and they had waited for the eye specialist to come and open my eyes. They informed my mother that I might my have my eye site. That past and I had my eye site and no major defects. I was in the hospital for a one and a half months, reverse isolation. I learned to recognize the hospital personnel by their voices and then when the doctor open the eyes I was able to see again. I was never informed of the possible life time effects that I may have developed. I married my husband shortly after I was released. A couple of months after being married I became pregnant, but I miscarried after my third month. My mother told me that it was too soon for my body to hold a baby. That same year I became pregnant during December 1980 and carried to full term in August 1981. I was able to have a total of four children. I still have to wipe my eyes when I am tried or sick. With the allergic reaction my tear ducts closed up alot causing abnormal tearing. I was given the option to have canals implanted into my nose to assist my flow of tears that normally go through the nose. I declined due to the outcome. It wouldn't have been a one time operation and there was a possibility of have the canals shatter inside my nose causing more harm. Not too long ago I saw a specialist and she informed me that I was very fortunate to have children and no deformities either. I know that having children are a blessing and thank God for his grace upon my life. I was informed that alot of people that have had the severity of my reaction have sterilization to the reproduction system and can't have children. I also came out with hardly any problems or defects. I THANK God big time for HIS blessing upon my life. I never thought I was ever going to get married or even have children. So that goes to show some that believe in God that He is real as real can be.
Gloria (Bocanegra) Lazzari

Name :: Ward Willis Email_address :: wwillis@usd440.com

Story :: Hello
My name is Ward Willis and my wife Nikki is recovery from Stevens Johnson Syndrome. She has been at this whole process since March 9th. Her spirits are good and she is progressing nicely. She had a few questions that she wanted me to ask others that had gone through this ordeal. First of all she is losing her Fingernails and toenails. We know that this is normal, her concern was when they do finally fall off what to expect. The second question was her nose she seems to continuously have these huge bloody almost like scabs clogging up her nose. She is on Steriods for her face, and I think she looks fantantic, but on both of those could anyone give us a timeline of when she will be back to normal. Last is her eyes. They are very swollen and red. She has seen an optomolgist just recently. She told my wife that she should have seen her much earlier. We believe that she might have permant damage. We were wondering if anyone could give us advise. Reassure my wife that things will be alright etc... She has been incredibly strong that is why 'I believe that she recovered so quickly. Please give us any advise if possible.

Thank you
Ward and Nikki Willis

Name :: Anthony J. Noonan Email_address :: xbear20911@Yahoo.com

Story :: In 1980 I had a vasectomy performed. Shortly thereafter, I contracted epididymitis. My urologist prescribed different medications that I don't remember their names but my pain and inflamation continued for many months. Finally, I was prescribed Bactrim DS of which I took for 14 days, I believe, and then for 14 more days, which was two regimens back to back. During this second 14 day regimen, my scrotal sack became hot and red and itchy and felt a little like it was on fire. It was in the summertime and I was working in a hot factory. I never thought I was having a reaction to the Bactrim DS since I had been having such pain and disconfort from the epididymitis. About a week after I started having this redness and burning and itching, I noticed that my scrotum had all new skin on it. The new skin was such a contrast to the surrounding skin that I became really "freaked out". I immediately made a visit to my doctor, who told me to never take sulfa medications again....that I had had an alergic reaction. I was not told that I had SJS, nor have any of the doctors I have seen since ever told me anything about SJS. My older sister, who is a RN and who is also alergic to pennicillin and sulfa told me that her younger son has just had a full body reaction to sulfa medication. This conversation with my sister enlightened me to SJS and the real seriousness of never, ever taking sulfa medications. I find out now too, that my mother who was allergic to pennicillin, was also allergic to sulfa medications too. For the past 26 years I have not known how serious my sulfa reaction was or could have been. I am seriously thinking of wearing a "medic-alert" identifier now that I know about SJS and how serious this condition is.
Thank You.
Anthony J Noonan.

Name :: sherry jackson Email_address :: sherry-jackson3097@sbcglobal.net

Story :: i went to my dr on and i started itching so i stop taking then i broke out inmarch 31 he gave me baxtra withsulfa then i when took one a red rash theni startedtoget high fever of 104and then my lipswere bleeding my ears and nose head disfigurerdmy eye was swallon shut i was not in my right mind

Name :: Karen McFarland Email_address :: KarenMcfarland1@hotmail.com

Story :: I have a friend that is 68 yr old female. She has had ongoing symptoms, un or misdiagnosed for about 3-4 years. I have researched different things and tried to help figure it out. When I found this-WOW! I believe she is suffering from TEN. She has all the symptoms. Has been hospitalized-to no avail. The just said she had Cellulitis. Went home after a week of IV antibiotics and within 1 day the redness, peeling, swollen calves and ankles, itching (which never goes away)and draining eyes, and constantly freezing returned. She has lost most of her hair at one time. Many drs have thrown their arms up with her. When she first started getting this, she was on a medical research drug for osteoporosis, which she does not have. After she started getting really bad off she discontinued the study drug(she recieved free med care and mamograms). They told her (of coarse) she had been on a placebo. Since then, many drs and drugs later, she just keeps getting worse! The only meds she is on now is a blood pressure med and a anti-depressant. The dr she saw this week, when she brought in info on Stevens Johnson and TEN, the dr said it would have come on quickly and probably wasn't it. She is really at the end of her rope with this. They just keep giving her anti-biotics and steroids(been on those off and on for years)! Can anyone help? We are in Memphis TN. There is a burn unit here but don't know of any drs specializing in this! I know she has seen at least 3 dermatologist, internists, neurologists, even an accupuncturist! Can anyone help me help her? Thanks!!

Name :: Dorothy Henning Email_address :: rondor6895@aol.com

Story :: I entered the hospital Dec 28,2005 to have back major back surgery. I don't remember much but I was in the intensive care unit the next day and spent a week there. I broke out in a rash that I remember made my head very itchy. The rash did spread and it seemed like all the doctors in the hospital came in to see me. I looked like I had a severe sunburn and I was swollen. I looked like a stuffed marshmallow. I was in intensive care and next thing I knew I was in renal failure and had to under go dialisis several times. Shortly there after I had to have two units of blood. It was decided that I had an alergy to NAFCILLIN. My BP was up and down. I had a graphic tongue and now I'm loosing my hair. Noone ever told me what I had but my surgeon mentioned Stevens-Johnson Syndrome and I am thinking it seems to fit. I also had halucinations but I don't know if that would also be a symptom. I am mainly in the dark and would like some input on the subject. I also hope that my hair will return to normal.

Name :: Karen

Story :: As a diabetic, I have nail fungus, in July 2004 my doctor gave me some samples of Lamisil to help thwart the nail fungus. I have taken a smiliar product before with good results. This time I didn't. I started taking the Lamisil on Thursday, on Saturday / Sunday I was sitting out side reading and noticed that I had a few red dots on my right foot, I was wearing some rubber sandles and thought it might have been a heat rash since it was so warm out.

Monday the "rash" had been all over my chest, I went to the doctor and was treated for a probable "yeast" infection.

Tuesday the "rash" had grown down my arms and around to my back, I called the doctor and was told that if it isn't any better on Wednesday to come in.

Wednesday the "rash" kept spreading, the doctor gave me an antibiotic since the "rash" seemed to have pus in them.

Thursday the "rash" was up to my neck and down to my knees front & back, it hurt, it burned, it was a red, burgundy color, I was swollen, I called the doctor and he placed me on an oral steroid and was told that if it was worse, I should come in on Friday.

Friday, I was in severe pain, swollen to distortion, my hands could hardly move and bend, my skin burned, it hurt to have clothes on. I went to the doctor who gave me antibotic shots. He admitted he was getting concerned and if it didn't get better I would have to be hospitalized. I was told to go home and rest.

Saturday, I woke in sever pain, the blisters were huge, all over my body. I called the doctor for an appointment, my doctor was off, but he had spoken with the covering doctor, who I made an appointment with. My doctor called, he said he was up searching and thinks he figured out what I have, told me that I was going to be hopsitalized today, told me I have "TENS". I went to the office, unable to put a bra on due to the severe pain and my skin hurt so much, I had a pair of elastic waist pants and a large t shirt. I couldn't control my body temperature, I was burning hot and then freezing cold. The doctor saw me and immediately called the hospital and set up a private room and to alert the staff I was coming. I was immediately placed on morphine. Our hospital doesn't have a burn unit, so they tried to make the room as close as possible.

The weekend was extremely painful, they did try to keep me calm, the specialist was called and due to come in on Monday to confirm the diagnosis.

Monday they came in and did a skin biopsy and confirmed the diagnosis of TENS. I was started on IVIG after a few days, as the hospital apparently had to special order it.

For the next week I had the most difficult time of my life. The pain was so unreal. The doctor wanted me to shower daily to try to keep me clean and lowest chance of infection, the shower felt like spikes being stabbed into my skin and drawn down my body.

Each time that I got up, the fluid would drain into my legs causing the blisters to engorge and pop/splat all over the floor. The sheets had to be changed every time I got up to use the toilet as they were soaked from the seeping and covered with the skin that stuck to the sheets.

Once the sloughing stopped (I lost 3 layers of skin head to toe) I was released to go and stay at home to avoid a possible secondary infection.

I was blessed, at the end of November, I was released from the doctors, healthy. I was left with some scaring, mostly in covered areas of my body. But I do have some issues with my skin that I didn't have before, but at least I have my life and my skin to have these issues.

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

Story :: This is an anniversary for me. Five years ago I came dowm with SJS. Judging how I felf mentally and physically, I thought that my life was ruined. (Bear with me, I always get emotional arounf this time of year).

Recently a friend told me that SJS has been the best thing that has ever happened to me. I thought about this. My personality has changed ever since all of this. I am now much more grateful, have a greater respect for chemicals and drugs, have a greater knowledge of SJS, and realize that a power greater than me is now in control. I am now more stable than I have ever been in my life.

SJS has been a hard road for me But I have learned lessons along the way that I never would have otherwise. And if I can help anyone in their journey, please let me know.

Name :: tim

Story :: My wife , age 43, recently returned home from almost a month in a ICU Burn Unit after reacting to an antibiodic combined with Motrin. She has TEN and multiple complications which I see frequently on this worthy sight. My 2 kids, 6 and 9 , were left about 2 months ago as she walked into a local hospital and the misery began. She was almost immediately transferred to a burn unit which no doubt saved her life. After approximately 1 month in ICU she was able to see her children and her home again. She lost 75 % of her skin and approximately 40 pounds. Now she has ingrowing eye lashes, high billyrubin levels, and constant dryness in her mouth . The best thing is that she will live and can raise her children with me. THe impact on our family will be forever scarring. I am glad to have found this web sight so numerous questions can be answered as our live takes a new course.

Name :: Cindy

Story :: Hello..I am a recovered SJS survivor, from a long time ago. In late 1958 I came down with flu-like symptoms. It was just past my 4th birthday when I got a high fever that would not go away. Then a rash everywhere, my eyes were "gunked" shut, my lips were scabbed over. At that time no one knew what it was so I was kept at home. The doctor came every day, tried antibiotics, including penicillin. These only made things worse for me. The rash got worse, my fingernails and toenails fell out, I lost weight. Mom took care of me and fed me with eyedroppers and through glass straws..all my food was mashed or made into liquid because I could not swallow. The doctor was not sure what the cause was only that I got the rash after the penicillin. He thought at first it might be a virus that was carried by a pet bird that we had at the time. The bird had lost all it's feathers and seemed to be sick with something. But no one knew for sure what the cause was. Finally a specialist was called in. He knew immedialtely that it was Stevens Johnson. A few different medicines were tried, but nothing was working. I was given 48 hours to live. I remember choking one night. I just couldn't stop coughing because of the dried blood in my throat. Mom quickly grabbed hot water and salt and had me drink it to clear my throat. I guess old fashioned remedies sometimes work. That and the grace of God. Well, this must have flushed out whatever infection was laying inside me, because later that night my fever broke. You can imagine how overjoyed my Mom was! It took a good two years for me to recover. I caught every sicness that went around because my immune system was so weak. I also had eye surgery to rebuild my eye linings..the blisters ate out my tear ducts also. I was one of the lucky ones. I have eyes that run constantly..the opposite of most SJS survivor problems, but I can see well except for the normal aging that doesn't let me see fine print anymore whithout glasses. I am still sensitive to bright lights and prone to bronchitis. I had to have dentures at the age of 12 because the sickness had just made my teeth come in badly...double rows, weak teeth and tender gums. I also have a scar on my lower lip from one of the scabs I pulled off as a child. My skin is sensitive to certain soaps and detergents and I do have hayfever. But these are things I can live with and not life threatening. Until last year I had no health problems. In December I had a spinal tumor...three inches..removed that was benign. It left me learning how to walk again after two months. I will have to go for yearly MRI's but again I was extremely lucky. The steroids and other medice I was on gave me a slight itchy rash but it went away after the drugs were stopped. The doctor was unsure of where this had come from but did not think the SJS had been a cause as he had never heard of any other SJS survivor that this had happened to. He seemed to feel that I was born with a defective gene and it had waited all this time to grow. Today I feel like one of the luckiest people on this earth. I am twice blessed to be here. My heart goes out to all the survivors of this terrible disease, especially the children. And the elderly folks. There are so many drugs that cause this that you are never sure until it happens to you or someone you love. Warning labels don't often tell the whole story. Look how many drugs have caused side effects that you would never think of. I hope through organiztions such as this we make more people aware of Stevens Johnson. This isn't the rare thing we once thought it was. God Bless all of you who have survived this.

Name :: Joy Grim

Story :: I began having conjunctivitus three days after I started taking the drugs of Vioxx and Bextra. I was given physician samples and both of these drugs caused the same reaction, Red swollen eyes, quite painful. I have not been on either drug for a year and a half and the eye problems continue, It seems nothing can be done. I was given these drugs following and auto accident. The sad thing is now I am scared, I still, at 57 don't need or wear glasses, yet my eyes blur when I have this and I am afraid it will cause permanent damage. The moral of this story is check out medications on internet before taking them.

Name = tina soard Email_address :: t.soard@insightbb.com

Story : IN JUNE OF 2005 I WAS PERSCRIBED LAMICTAL FOR MY BI-POLAR. ON JULY 16TH I NOTICED A FEVER BLISTER WHICH I NEVER HAVE. ON SUNDAY TH 17TH I WAS FEELING UNDER THE WEATHER BUT WENT TO CHUCH. BY MONDAY THE 18TH I WAS FEELING REALLY BAD SO I WENT TO THE DOCTOR AND HE SAID I HAD STREEP THROAT, 103 DEGREE FEVER AND THRUSH SO HE PRESCRIBED BIAXIN. TUESDAY THE 19TH I WAS FEELING EVEN WORSE BUT I THOUGHT IT WAS THE STREPP. I HAD TO TAKE MAY DOG OUT AND DID NOT EVEN LOOK IN THE MIRROR SO I HAD NO CLUE WHAT I LOOKED LIKE AND REALLY DID NOT CARE AT THAT POINT. MY EX-HUSBAND HAPPENED TO BE DOWN HERE WORKING AND I MUST HAVE SCARED HIM BECAUSE HE SAID I NEED TO GO TO THE DOCTOR. HE CALLED 911(AND SAVED MY LIFE). WHEN I GOT TO THE HOSPITAL MY BLOOD PRESSURE WAS 62/38, ACUTE RENAL FAILURE AND NEAR FULL BODY RASH. THEY SUSPECTED STEVENS JOHNSON SYNDROME AND HAD ME TRANSFERED TO THE UK HOSPITAL BURN UNIT. THEY TOLD MY FAMILY THAT I WOULD PROBABLY BE THERE 6 TO 8 WEEKS. I WAS TREATED LIKE A BURN VICTIM BECAUSE FROM HEAD TO THE BOTTOM OF MY FEET WERE BLISTERED. BY THE GRACE OF GOD AND MANY PRAYERS I WAS ABLE ALTHOUGHT STILL ON A IV ANTIBIOTIC AND STILL WITH MANY BLISTERS I WAS ABLE TO GO STAY WITH FAMILY MEMBERS AFTER 3 WEEKS. I HAD HOME HEALTH VISITS FOR ANOTHER 4 WEEKS AND WAS FINALLY ABLE TO TO RETURN TO WORK ON LIGHT DUTY. NO ONE HAS REALLY BEEN ABLE TO TELL ME WHAT THE LASTING EFFECTS ARE AS I SEEM TO STILL BE HAVING SOME PROBLEMS, BUT I GUESS I'M JUST VERY LUCKY TO BE ALIVE!!
TINA

Name :: Mark Eady

:: I dont remember any of what happened to me and I'm not sure of all of the facts timewise. I'm now 31 years old, this happened to me within my first year of life (I think), I was taken to my doctor with some sort of illness (a chest infection or something) and my doctor gave me some medication for it. I didn't get better so he tried something else, still no results. I don't know how many different times he gave me different medication but in the end my body rejected everything as I was basically overdosed.

As my nappy was taken off there where boils and puss, my body expanded with the reaction and I was rushed to hospital, I don't know what happened once I got there (I know that I died a couple of times). Meanwhile my parents where being questioned by the authorites as the medical staff thought that I had been bathed in boiling water and they could'nt explain my bad and nasty apperance.

In the end I survived, nothing happened to my family, I don't know what happened to the doctor?? and we was told and list of four medicines not to take, Penicillin, Ampicillin, Vallergan and Paracetamol which are found in most medicines and they thought that any of these four would just kill me.

Then, at the age of about 12 I had a chesty cough one night and couldn't sleep, my mother had some very mild cough mixture which had none of the four ingredience on it, I had one spoonfull and within 5 seconds my body doubled in size with the reaction. The doctor ( a new one) was called out and he told us to fill a bath with cold water and to put ice in it, and to bath regually to take the swelling down. If after 3-4 days I was still swollen I was to be taken to hospital, but the swelling went down.

Now the doctors wont give me anything and have told me not to take anything as they just don't know what I can take, so basically I'm now allergic to ALL medication as far as everyone is concerned. I wear a medic alert braclet and I have had it tattooed on my heart aswell (incase I loose the braclet or medical staff don't see it, It's worked once so far).

I still have some reminders of my reaction, my cheaks are scared and my eyes look like I'm high all the time, and if I get ill I let my body sort it out naturally and no painkillers after any surgury, I can be knocked out for surgury though (thank god).

Name :: Bruce Inwood

Story :: In 1972 our 20 month old daughter Tacy was given Penicillin for a flu that she had and within a short time she started to develop a rash. We were concerned with this and took her back to the doctor who prescribed Chloral Hydrate. She got progressively worse and ended up being rushed to the Childrens Hospital where we were eventually confronted by the doctors stating that it was a life and death situation. Not good news for us. She was losing skin rapidly and was looking monsterlike with her head and neck as wide as her shoulders. She was diagnosed with SJS, which was unheard of in Australia at that time. We were advised that she was one of only 4 cases they were aware of and the only one in our home of Adelaide in South Australia. Very frightening as we thought they would not have any idea how to treat such a rare problem. Eventually through the hard work of the doctors she started to clear up and we were able to take her home after 2 months 1 day. We had to continue applying creams to her skin for months after. Several years later we found out that she was actually allergic to Chloral Hydrate, which the hospital had been giving her daily, compounding the problem. She now wears a Medic Alert bracelet stating her allergies.

Tracy has had enormous problems with reflux and has had numerous operations, which have not been too successful, and has to visit hospital for pain relief every few months because of adhesions to her bowel. We believe strongly that this is as a result of SJS.

I approached the hospital a few years ago for medical records and copies of photographs but they advised they were destroyed, which annoyed me as with such a rare case at the time I would have expected them to be kept and used in teachings.

It wasn't until Xmas 2005 we were watching Maury Povich and saw a story on SJS that was similar to our daughters problem and we have been endeavouring since to obtain a copy without success and would love to get hold of the story somehow. If you could help that would be appreciated.

Tracy is now a beautiful young lady, with minimal scarring on her neck, and the mother of our two beautiful grand daughters.

Congratulations on your foundation and keep up the good work. We remain yours,

Bruce & Karen Inwood

Name = Sean O'Leary Email_address :: MD11Fr8Dog@aol.com

Story :: My first episode was in June 1995 as Erythema Multiforma, but it was never diagnosed until about 1999. About 2-4 times a year I would get moderate to severe blistering in my mouth - gums, lips, tongue, cheeks, etc.

The doctors never could figure it out - not thrush, not a virus, nothing bacterial. There were a couple times I was hospitalized for a couple days due to severe dehydration - my mouth and throat were so sore and swollen I could hardly get water down.

I was finally diagnosed with Erythema Multiforma by an oral surgeon, on referral by my periodontist. He offered me two choices of treatment - prednisone at onset of symptoms, or acyclovir daily suggesting that it may be triggered by my immune system fighting a herpetic virus. I opted for prednisone. Usually the prednisone would do the trick, but occasionally I would start it too late or I just didn't have a big enough dosage.

In late April, I had what I thought was conjunctivitis and went to see my family doctor. He prescribed an antibiotic ointment. The infection got worse, so I saw my ophtamologist and suggested the possiblity of Erythema Multiforma. We got off the antibiotic and he had me use a different ointment.

A couple days later I was noticing my tell tale symptoms of Erythema Multiforma in my mouth. usually accompanied by body aches in the neck and shoulders. A couple days later my whole mouth and inside of my nostrils were blistered, my right eye was almost shut and my right eye vision was 20/250, with my left eye starting to catch up. I started to get blisters on my hands, and a few "below the belt."

By this time we got my dermatologist in the loop and she did some biopsies from my mouth and from my hands. I also saw an eye specialist in Denver that had had some experience with SJS. The biopsies and the specialist all comfirmed SJS.

We treated with large doses of prednisone and opted not to hospitalize me due to the susceptibilty of infection with a compromised immune system. Eventually after about 3 weeks the blistering had subsided, and after another 3 weeks I was completely off of the prednisone and eye ointments.

I was left with some scarring on the conjunctiva of my right eye - called "tethering" by my ophtamologist, and occasionally I get dry eye, that seems extra senstive (extra "salty") when I get a little less than optimally hydrated. I still have better than 20/20 vision, thankfully, since I'm a professional pilot!

My dermatologist suggested that we try putting me on Valtrex, under the premise that my immune system goes haywire, usually seasonally, in successfully fighting a herpetic virus (though I've never had a cold sore, my blood work suggests I probably have a herpetic virus - as do most people).

So far, its been over a year since had the last Erythema Multiforma/SJS. The first time in over a decade that I have had even a very minor case. The Valtrex seems to have done the trick so far.

Name :: Mark Eady

Story :: I dont remember any of what happened to me and I'm not sure of all of the facts timewise. I'm now 31 years old, this happened to me within my first year of life (I think), I was taken to my doctor with some sort of illness (a chest infection or something) and my doctor gave me some medication for it. I didn't get better so he tried something else, still no results. I don't know how many different times he gave me different medication but in the end my body rejected everything as I was basically overdosed.

Name :: Conchi Garcia Email_address :: franmc12@lycos.co.uk

Story :: Mi corazon esta algo partido desde que en Marzo del 2006 mi prima, una persona muy querida para mi con la que he compartido muchos momentos maravillosos en esta vida sufrio de SJS, su vista esta afectada y se encuentra deprimida, es una madre joven de 2 nenas preciosas, yo se que le seria de ayuda el poder hablar con gente que haya pasado por la misma experiencia. Hay alguien de Espan`a que haya sufrido de SJS, conozca esta asociacion y podria contestarme, para poder ponerse en contacto con ella y animarla?