Name:: Sandra      

Story::     Hi, I have not been officially diagnosed with SJS, but I think I have had 2 minor episodes: 1 from a benzodiazepene; the other from the opthalmalogical dye fluorescein. I had skin weeping, dermatographism, itchy bumps, 1 burn lesion and 1 "bullet" lesion that both blistered and healed (other than that, no skin blistering or peeling), burning sensation in throat and mouth, a cough that lasted over a week, swelling in the lips, small lesions in the mouth, some gum problems, lethargy, dry eyes, menstrual cycle irregularity, and fatigue. Also, my face got really broken out, and my hair became brittle, like straw. I was very fortunate that my eyes were okay. Strange that this would be considered minor SJS. To me, they were awful. It took about a month to recover from the last episode.

Name:: M Davidson       

Story::     About 6 months ago I was diagnosed as a Type II Diabetic. My doctor prescribed Glucophage (Metformin). I was taking no other medications at this time, over the counter or prescribed. In less than 8 hours of starting this medication I was feeling sickly... Nausea, somewhat dizzy, Abdominal Discomfort and headache. Almost flu like symptoms but I was told that this medicine could cause things like this to happen but should disappear in brief amount of time.
I ended up feeling so bad that I retired to the couch where I feel asleep for a few hours. Upon awakening I got up and started moving around to get a few things done even though I still felt bad. All of a sudden an area on the right side of my abdomen started to itch. When I scratched the area (without even thinking) it BURNED! Then an area on the upper right side of my chest itched. I rubbed that area lightly and it BURNED. Now I was taking notice that something was wrong and ran into the restroom. I lifted up my shirt and there were three HUGE red areas filled will blisters. I lowered the top of my pants and there were two more areas just like the three on my chest. I also noticed two other areas forming on my neck. Now they all started to itch at the same time. It was driving me nuts because I knew if I just touched the area it was going to burn and hurt.
I hadn't eaten anything at all because of the nausea .... so it wasn't anything I had eaten. I hadn't changed laundry detergents .... so it couldn't be that. We don't have any pets ... so it couldn't be that. OH MY GOD... it has to be the Glucophage I just started taking. I immediately got on the phone and called the doctor's office. I was told to discontinue the medication immediately. I am here to tell you that after 6 months ... my body is still scared from the worst case of hives I have ever seen. It may be a somewhat rare side effect but I am living proof that this sort of thing happens.

Name:: Esther Veira       

Story::     Hace tres meses me diagnostican sjs desde ese entonces hast ahora mi cuerpo y cara no han sido mios. Mi cara se deformo por las vesiculas. Los ojos se me pegaban y habia una enfermera que con todo el cuidado trataba de mantenermelos abiertos, los labios se deformaron completamente, el paladar y la lengua tb los vi afectados. Pero lo peor fue el tronco y los brazos y la espalda. Se me llenaron de ampollas hasta q empezaron con el tratamiento de inmunoglubina. Respondi bien, de estar en cuidados intensivos y a un paso de morir me encontre llena de vida otra vez. La recuperacion esta siendo larga. La cara me est? mejorando muchisimo, las cejas y pesta?as han comenzado a crecer y mis rasgos est?n volviendo. Ahora la espalda tb est? practicamente recuperada. La peor parte los brazos, est?n con cicatrices hipotr?ficas, hasta ahora me han mandado camisetas de alta compresi?n y pasarme una crema de orde?e.Agradezco cualquier informaci?n en cuanto a la recuperaci?n y tratamientos.S?lo puedo a?adir gracias por estar ah?.

Name:: Hans Cortez       

Story::     I went to a doctor on May 14th 2004 for a Swollen Elbow, the swelling was from Bone Chips in the elbow Etc... I was prescribed FELDENE or PIROXICAM and within 3 days i had broken out with a rash that seemed to be Poison Ivy or Poison Oak.. Also as far as i know for the last 31 years of my life i was not Allergic to any medications... So this medication is now on my list of "Not To Take Ever Again" Medications.. I am now prescibed Predisone if that is in fact the correct spelling.. So we will see what this does to me, hopefully it works and doesnt give me another allergic reaction..

Name:: Linda B.       

Story::     I was diagnosed with SJS in 1969 at the age of 6 years. The suspected cause was penicillin. I was admitted to Children's Hospital in Columbus with a high fever, and skin rash covering my entire body. I was tested for myriad diseases before a diagnosis was made (after about a week, I believe). My skin sloughed off, my abdomen was extremely distended from a severely swollen liver, and I had lesions in my mouth. I was put on a course of Prednizone, which in my understanding shut down my body's out-of-control immune system and immediately began reversing the course of the illness. Again, this was in 1968. I am appalled to read the stories on this web site indicating a continuing lack of understanding of this disorder into the 1990's and beyond. I was lucky to suffer no long-term disabilities, aside from a tendency to get an annoying, itchy red skin rash whenever I am suffering from an infection of some sort. The rash seems to be linked to the illness, not any specific drug. I wonder if other SJS survivors experience this recurring rash, and what can be done about it.

Name:: Laurie       

Story::     Not much of a story to tell. I was hospitalized and immediately put on a new drug. The doctor warned me that there is a high incidence of a rash with this drug and that the rash can be bad. So he started me on a low dose and in a couple of days my butt cheek had an itchy rash. I told him and the nurses right away. They said this wasn't the usual spot for the rash to start so I was to keep taking the medication. They thought it may be just a contact dermatitis. I was thinking, "from what", I had my own underwear on. The rash then spread to my back, sort of behind my shoulder. They then took me off the drug. I am upset because I just got home from the hospital and looked up the drug (Lamictil) and the side effects,this rash is a medical emergency! They should have discontinued it at once at the first sign of a rash. It can actually be fatal! I was lucky in that it cleared up with medication used orally and topically in about a week.

Name:: linda garcia       

Story::     my sister was taking a drug called bextra and started taking a genertic placanil for lupus. Nine days ago she developed a rash all over her body with very intense itching and burning sensation on her skin. she went to the emergency room and was given two injections for a allergic reaction to her medicene on the second day of her reaction. The glands in the back of her neck are swollen and very tender. She says the itching will travel from one part of her body to another. not getting any relief she went back to her family doctor and recieve another shot of prednisone. I took her back to her doctor two days later because she is still in misery. She was started on a dose pack of predisone and is taking atarax 100mg every four hrs. I questioned her doctor if maybe she may have sjs. Her skin is very red like she has been sunburned and she says it feels like she has been blisterd but she has no blistered skin or mouth ulcers so the MD said because she has no ulcers or blisters or ruptured skin that it is not sjs. I am very concerned about her. I have been through sjs before with my daughter and I know what it can do . If it had not been for my Lord Jesus I might not have my daughter today. Can you have sjs without symptoms of mouth ulcers or skin blisters. She says she has developed an ulcer in her vaginal area. If you have any helpful imformation I need it asap. thank you very much.

Name:: Katie Pennell       

Story::     Miracles Do Happen
May 1995, I had been suffering from Interstitial Cystitis and reoccurring yeast infections. I went to my urologist to see about the IC. I happened to mention to him that I thought the yeast infections were making the IC worse. He told me that we would take care of the yeast first and then tackle the IC. He put me on a 28 day---100mg a day dose of Diflucan. Diflucan is a by-mouth yeast infection drug. (Come to find out later, I should have been given 1 ? 150mg. pill!) I took Diflucan, 15 pills, over 18 days. Below is the account of what happened next.

This summer was the ?summer lost.? On Saturday, June 10, I attended one of my daughter?s softball games. I got a little sunburn. I decided to color my hair that evening. On Monday, June 12, I woke up with my eyes crusted shut and blisters on my sun burnt neck and on my right arm. I went to (my allergist). He took me off Diflucan, a medication I had been taking for a yeast infection. On Tuesday, June 13, I woke up with my mouth covered in blisters. I felt it would go into my throat, so my husband took me to the ER at our local hospital. I was given two shots and sent home. On Wednesday, June 14, I was no better and continuing to get worse. Mom took me to (the allergist) again. He gave me several things and Nizoral. Nizoral is in the same family as Diflucan. By Saturday night I was miserable. The blisters were so hot that some on my back even burst. I called (the allergist.) Took him away from a concert. (He was not happy!) Told to stop taking Nizoral?given more prednisone on Sunday. Monday morning, I was about 50% covered in blisters on my legs, arms, and back. These blisters were sizes from a dime to a dollar and filled with fluid. I actually sloshed when I walked. Went to see (allergist) on Monday, June 19th. Cried. He said I should see an infectious disease doctor. He asked me what he could do for me. I lost it. Please put me in the hospital. I went in around 4 p.m. We called my sister and told her what was happening. She took the first flight out of Greenville/Spartanburg and arrived around 8 p.m. No orders given. Tried IV six times. ER doctor got one in my left arm. Had to have an arm board to keep it still. 11 p.m., still no orders. Nurse calls new doctor?s answering service. The doctor on call gives orders. By Tuesday, June 20, I was 75-80% covered in blisters. They were on my arms, legs, feet, hands, neck, back, hair, face, mouth, and private areas. Because I was very dehydrated and required antibiotics, morphine and other medications, a wonderful doctor put in a central line. What a neat person. Very caring. I was later told that if I had waited one more day to enter the hospital, I would have been dead. The central line was easier to deal with. I have vague memories of the first week. I remember that my feet swelled so bad that I could not walk. They put a portable toilet next to me so I wouldn?t have to go far to go to the bathroom.

My day looked something like this: Wake up, after being awakened several times during the night to be checked, get a warm washcloth from my sister or my husband. Use one warm washcloth to open my crusted eyes. Even with my eyes open, my vision was so blurry that I couldn?t see well. We tried eye drops, but they only helped a little bit. Get another warm washcloth and use it to open my crusted mouth. Try to eat something. Finally I convinced them that I really couldn?t eat. They put another bottle of stuff on my IV pole and told me it was food. At least I didn?t have to try to eat anymore! I was to have twice daily whirlpools. They hurt soooooo bad. After I returned to my room, from the whirlpool, my husband, sister, and or the nurses would slather Aquaphor on my skin and wrap me in gauze bandages. I looked something like a real life mummy. My skin was debrieded, blisters removed, once a day by a dermatologist. He told me one night that I had an amazing faith considering what I was going through. I hated what he was doing to me, but I looked forward to seeing him. He was a very kind, gentle man. After the debrieding, I would be slathered again and bandaged. I was treated very much like a burn victim. (They talked about moving me to a burns unit in Cincinnati, but the doctors and my sister felt it was too risky.) The biggest fear was that some of the open skin would become infected. They tested my open areas often to make sure I wasn?t developing any infections. I did develop a few, but they either upped my antibiotics or put bacitracin on them.

I was evidently suffering from sleep deprivation. Finally given something to help me sleep. The whirlpools were still awful! So much pain. The doctors tried to find a pain medication that would make my whirlpools feel better. They tried Ativan. I thought I was being chased by my IV pole. They tried Demoral and I thought I was a cartoon character and I hallucinated that buildings outside of my room were jumping around. They tried Haldol. That one was the worst. I got down to the whirlpool and my jaw started locking shut. I told my sister I was having trouble breathing. She told the PT people to call upstairs and tell them to call my doctor immediately to reverse the effects of the drug. Months later she told me that she thought I was going to die right there! Thank goodness for Morphine. As a last resort they tried morphine. It worked and gave me few side effects. Although I did tell my sister that I saw her running a marathon in her underwear. I also told my husband to watch out for the car; all the while he was sitting on my bed. During this time, visits from my daughters were bad. They had to wear gloves and a mask. I was in a room that allowed me to breathe only my own air. It was an isolation room. My youngest cried and told me that I wasn?t her mother. My oldest didn?t know what to do.

On Monday the 26th I evidently flipped out. I remember seeing my husband in a red and white shirt, on top of me. He held me down for 3 hours, 11 p.m.-2 a.m. Months later, I asked him what I was so flipped out over. He said that I called him the devil and that I was fighting the devil. I slept through the 27th?my oldest?s birthday. By Wednesday morning I was alive again. My doctor gave me a stern talking to. He basically told me to get my act together and start healing. I was terrified to go to the whirlpool. (Terrified doesn?t even do the idea justice. I was scared out of my mind at the mere thought of going to the whirlpool again.) The chaplain layperson came in and prayed with me. Then a priest my family knew came in. He and the layperson prayed over me to give me strength. I made it through the whirlpool and things started turning around. From that point on, I continued to get better. My sister, bless her heart, dropped everything and flew up on June 19th to be with me. Through her efforts, I feel she saved my life. My best friend came to see me almost every other day. She took care of the girls several times. She gave my oldest daughter a birthday breakfast and cake. My husband ? What a trooper! He did things for me I know no other husband could have done! I am so lucky and so blessed. He was there constantly. He was caring for the girls, caring for the house, and visiting me. During all this, he was interviewing for Principalships. He got his job with Milford, all the while spending the night in the hospital.

I came home on July 5th. I was a little scared of what life held in store for me at home. I tired so easy. Just walking to the kitchen was a chore. Eating was still not fun. Thank goodness for Jamocha shakes. I worked hard to get my stamina back, but it was hard. I wasn?t able to go to Orff II or be in the Summer Band. I had to rest a lot. By August I was feeling some better. My skin had finished peeling by then. My sister and her family came for a visit. She told me many things I didn?t remember. Funny things I had said when I was out to lunch. Her husband took pictures to document my scars. I remember one night during the first week I was in the hospital. I saw my sister crying. I thought she was upset because she missed her son. She said no, she was crying because she was afraid. She didn?t want to say it, but she was afraid that she wouldn?t be able to do enough to save me. Years before she had been a mobile nurse with Humana Hospital in Louisville. They had sent her to a burns unit outside of Atlanta for six weeks. She hated every moment of it. The pain. Little did she know that because of that experience she was able to communicate that knowledge to the nurses and my husband at the hospital. This knowledge saved my life! Oh, He works in mysterious ways.

I continued to go to my dermatologist long after I got out of the hospital. He checked me twice weekly and then once weekly basis for quite a while. Close to the last visit he asked me if I fully realized what I had been through. I of course said yes. He then told me that I was more than a little lucky; I should be pushing up daisies. The two conditions I developed can be fatal. Stevens-Johnson?s Syndrome and Toxic Epidermal Necrolysis are very serious reactions to drugs. TEN has a high rate of mortality. Sometimes as high as 90%, according to the research I have done. Patients with TEN also have a 90% chance of severe eye damage as a result of the condition. I have the same prescription as I did before this all happened.

Yes, I still have scars, dry eyes and nails that look funny, but I am here enjoying my life. How lucky and blessed I am.

Name:: Jasmine       

Story::     I have a 2 yr old daughter who had a seizure one morning, prior to that , she's vomiting and have diarhea but no fever at all. She didn't like the taste of pedialyte so I just keep giving her water to drink until she had the seizure. She was rushed to the hospital and try to determine whether she has meningitis or any bacterial infection, had CT scan and EEG and blood cultures but every results is ok . But during her stay on hospital , she was given phenobarbital and also some antibiotics for precautions if she had any bacterial infections according to the nurse. After a week on phenobarb presciption , I notice her face is red and have light fever, I gave Tylenol. By morning, I saw her red face looks like a rosy cheeks and her cheeks is really hot. It takes me 3 more days before I went to the neurologist and she told me she will stop the medication because looks like she's allergic to it. The neurologist ask another pediatrician in the clinic on what it is and what kind of medication to give to the baby for relief. It was just rash and ask if I tried benadryl. Anyway, that same day , I also went to the primary physician and he gave me a prescription for benadryl and he told me to prevent the scratching so that the rash won't get bigger. I swear to god, I sleep with my daughter and never sleep because I'm trying to hold her hand if she's trying to scratch her face or arms. But still, the rashes keeps getting bigger and redder. My baby cannot sleep and keeps crying , I keep calling the doctor and he thinks I'm just over-reacting. It keeps getting worse everyday and after third day , I went back to see the primary physician but only his partner is there. He gave me prescription erythromycin and prednisolone, and antibiotic cream for my baby's vagina because it's bleeding which I thought she scratch it. Her face and arms is getting worse and I saw blisters . On that night , I'm about to give her medicine and I ask my husband to help me because she refused to eat or drink anything because her mouth also has blisters. I hold her face to give the medicine and she moves her face away, and I was realy shocked. Her skin on both cheek came off and saw raw and bloody meat. I cried and also my husband , i call ambulance and they both go to the hospital. I stayed at home because i just have a newborn baby, just moved in the place, no relatives at all, both me and my husband. It's very difficult situation at that time my husband is also sick, and have fever. We got no choice but to let my husband take care of the bigger daughter in the hospital. She was admitted at the hospital but later on transferred to differnt hospital who has a burn unit. 3 day in ICU and 7 days in regular room in reverse isolation. Compare to what other has experienced, her damage is burned cheeks, lips, arms and dots of rashes on some other part of the body including legs and she has watery eyes. They know it's sjs when she was admitted so they stop all the medication and had an IVIG gammo-globulin. Now, it's almost a month, her skin is new, pinkish and scars everywhere. The only thing I worry is her watery red eye as if her left eye has conjunctivitis ever since she got out of hospital. As i've read from other experience here, some people become blind. I'm going to consult a doctor to refer me to opthalmologist after the memorial holiday to find out whether there something that needs to be done to save the eye if it will fail later. I saw this website and find it very helpful because yesterday when i gave my daughter some cough medicine, i saw some rashes again so I stop it, lucky the rashes stop by next day. It seems I have to be very careful now with any kind of medicine for her. If you have any kind of input or suggestion or questions, you may email me and it's welcome.

Name:: Simon Mott       

Story::     i found out i had sjs the hard way as most peopel usually do, i live in the bahamas and it was a shock to some the doctors here because most of them had no clue about this horrible affliction, i was about 23 years old and tried to break up two family members who were fighting and in that received a blow to the head that rendered me unconcious. i was taken to the hospital and somewhere along the lines my situation went from a blow to the head to he had an epileptic episode, so iwas prescribed DILANTIN, which i learned was used for patients with epilepsy.well all this was not know to me whilst i was on this medication so i was on it for a bit until i broke out in a strange rash. at first my motherthought it was the measles or something, my lips turned purple and i started losing my vision and one day i passed out. my mothertook me to a private doctor who told me that it was an allergic reation to the meds, so he took me off and presribed something with steroids for the rash but i continued to get worse.went to the doctor again and passed out in his office because i had a high temperature and i was admitted to trhe hospital.took them awhile but they diagnosed me with sjs and i spent month in the hospital pumped up on meds and steroids to clear up my skin, my nails dropped out and everynight i felt as if 1000 scorpions were stinging me all over my body, when i was admitted that day the doctor told me that i was near death because the bumps in my throat wouldve swollen the passageway and prevent me from breathing. to this day if i get worked up like if working out or something i feel a stinging sensation all over my body. i dont take any medicines now, if i have a headache i endure, if i have a flu or cold i endure, because i dont ever want to go through that again, so i thank the maker that i am one of the luck ones who got proper diagnoses and attention at the right time.if there is anyone who would like to contact me you can and to all of you out there like me who share in this horrible condition i wish you all the best and take care.

Name:: Amanda Leone       

Story::    When i was 12 years of age i became ill with the SJS and where i am from noone had ever heard of it before.I was taking an sulfa drug and later found out that i was allergic to it.At first my mom just told me to stop taking it and maybe i would be better.Later that night i had went to sleep and woke up as i woke up my sister was in my face looking at me.So then i said whats wrong with me and she said you have stuff all over you.At that time my mom has rushed me to the hospital they gave me a few shots and sent me home. As i awoken the nest morning all i remember was looking at my self and saying that i would not ned a mask for Holloween. As a few days past i could not eat or use the bathroom.Its was a Friday that my sister had a volleyball game so me mom went with her my cusion was at home with me.As she tryed to get me to eat i fell out.At that time i was once again rushed to the hospital but not the same one as before this time i went to a better hospital! They had to take some of my skin to see what drug i was allergic too.After they did that they got me a room and my mouth was shut together so they tryed to clean it and i cryed because i guess they thought that it was not hurting me but for all the people that have has this illness before would know that it hurts.My nurse had told me that i got to the hospital just in time they said that if i would have wasted one more day then i would had died. So they told me that i had it everywhere but my eyes.The eye doc said that i could had been blind if it had been in my eyes.But i would like to thank God and the people that helped me work through that illness. Now i am 14 years old and i still have spots on my skin from SJS! As i think about it and sit down and talk to my mom about it all she can tell me is that i looked like a burned person.But for all the people (Child or Adult) that has had this i would like to say that your not the only one out there! This is a moment that i will NEVER forget!

Story ::    In 1993 at the age of 12, I began developing some of the classical signs of what has now been diagnosed as SJS - severe blisters in the mouth, making me unable to eat/drink, etc. After being hospitalised many times over the next 5 years, my condition was not properly referred to until 1998. Fortunately, while in hospital, although my condition had been bordering on critical, I never suffered as badly as many of those shown on this website. After diagnosis, I was put on prednisolone and more than any other drug before (I ahd been on IV acyclovir in hospital) it proved successful in clearing up the condition. However, as the years have progressed, my outbreaks have become far more frequent and I am on 5-day intensive courses of steroids on average, once every six weeks. 12 5mg prednisolone at day for five days every six weeks is obviously concerning considering their side-effects. Yet because the root-cause of my SJS has yet to be discovered, I have no choice, lest I become extremely ill with SJS. At present I am able to curb the worsening of the condition as soon as I feel an outbreak of blistering. I do not take regular medication apart from the steroids - I did take roaccutane and minocycline for acne when I was 19, but that is 7 years after I first became ill with SJS, so these drugs cannot be the root-cause. It does seem that the condition has got slightly worse since I used these drugs - I now suffer from severe redness and breathlessness(but this again could be the side-effects of the steroids pushing up my blood pressure and not the SJS).
I am getting increasingly concerned. Does anyone have any advice on how I can find the cause of my condition and remove it from my life? Perhaps it is something I use everyday, but why then did it only start when I was 12? Do many SJS victims suffer from periodical outbreaks such as mine? What non-drug related factors can cause it? Help please!!

Story ::    After reading some of the other stories I realize how lucky I was to of had a MILD case of SJS. While taking Bactrim for a staph infection I came down with a serious case of what I thought were flu like syptoms. It being Friday I went to the drug store to stock up on cold medicine to get through the weekend. Needless to say that by Monday morning I was a complete mess. Hadn't really slept and could not eat because of severe dry mouth. Extremely thankful that my doctor was knowledgable about the disease.( He was also the one who I went to for the orginal infection. ) He pumped me full of three bags of saline solution since I was dehydrated from the SJS and the antihistamines I'd been taking all weekend. After a long three week stay at home alone I was finally ready to get back to work.
My question would be are there other people out there who still don't feel quite right about everyday things? My body doesn't seem to be able to hydrate as well. I drink tons of fluids but it seems to go right through me. ( Being an avid biker I find this odd. ) What about problems with the eyes. Wearing my contacts appears to cause my eyes to break more blood vessels. Maybe there are other things that I can't quite put my finger on that someone else may have felt. Please feel free to get in touch. Make sure you put SJS in the subject line of the e-mail. Read most of the stories and plan to go back through to see if I missed anything I wanted to expound upon.
Thanks everyone for sharing your experiences. God bless those we've lost and their loved ones.

Name :: Judy Turbedsky        Email_address :: judyst@comcast.net

Story ::    Hi! My name is Judy as always it's been a long road- I'm doing better now but it wasn't always easy esp. on my husband I'm 60,married &angry. I entered Jefferson Hosp on Philla/ on 8-7-04 for fusion of my neck which was to be accomplshed both anteriorly and posttierly.The surgery was successful in accomplishling the stability of my neck but there were many side journeys to this stability. I developed a spinal fluid leak and an infection-was given IV vancomycin, azaltam and tobrumycin consectively both in hospital consecutively both in hospital and at home with IV meds being delivered to the home.. and my husband being instructed how to administer them-I was so ill from the combination and being a post surgical patient the I could not be of any assistance in any phase of my care .One nightI felt even sicker and was running a fever-woke up my husband and told him I had to go to the hospital!--I was taken to the ICU adn kept there for 4 weeks more-then transferred to a med. surg unit for several weeks . always by myself. Through these weeks had been on a ventilator.had rashes,prolapsed rectum extreme pain and little I could eat due to asthma and swallowing difficulties. -always I wanted to get out but was told I was not strong enough to live on the outside! As I read your stories I am saddened and wish I could meet all of you- you are my sisters and brothers in pain and sorrow and prayer.You are in my daily thoughts and we will be survivors and care-givers to others-hope to hear from all of you soon.-I'm in the Philadelphia area!

Name :: Ramona       

Story ::    Hi there! I just wish your site was around before my mother past away back in 1984. There was no clue to what she had. I am glad that there is information now and able to understand what was wrong. Great web site!

Name :: Robert Lambert       

Story ::    Here's what i know so far:
About 2 weeks ago my older brother (55) was prescribed an anti-convulsant TEGRETOL to help with some shaking he has had in his hands and fingers possibly the result of drug use throughout his life and about 3 days ago he began to hallucinate for lack of a better description. My mother then called 911 where he was taken to the hospital and then released with no real explanation of what was going on. The following day my mother took him back to the prescribing doctor's office where the doctor expressed no real interest in my brothers condition nor any explanation as to what was going on. At that time an assistant of the doctor's told my mother that she needed to take him to the hospital immediately which she did. Upon seeing my brother the ER doctor addmitted him immediately and finally after about a day diagnosed him with Steven Johnson Syndrome. Currently he has a body rash covering his entire body as well as in his mouth. From what i'm told his skin has the blister like lesions that are draining as well. At this time i dont have the exact name of the medication he was prescribed but i'm working on it. From what i'm told his skin does appear that it will be sloughing off shortly as well. Thats what i know so far and i thought i'd share that. If anyone has any suggestions on action to take or something we should be doing in regards to my brother's care feel free to share it. Thanks

Name :: Charles R. Smith       

Story ::    My siter, Catherine, 42 years old was diagnosed with SJS. She is in intensive care in the Kimberley Medi Clinic, South Africa. It is very painful for the family to see her in such a condition and we would like to make contact with people in similar situations for support

Name :: Marian      

Story ::    I developed toxic epidermal necrolysis in June of 1982. I was just celebrated my 4th wedding anniversay and my first child at that time was 11 months old.
My eyes were the last thing they considered looking at. Fortunately, I still have my vision. Suffered a tremendous amount of pain, had total body involvement. My eyes have to be the worst thing to live with. Although all these years have passed, I still suffer the effects of it. I wear contacts and glasses together. I had punctal occlusion done on the ducts. I almost lost my sight in 1993 working at a computer job. At that time, I deveoped multiple surface diseases and multiple corneal abrasions. The illness had a great affect on my first marriage that lasted for 23 years. I gave birth to a son not long after being discharged from the hospital with tens. He was extremely hyperactive and very hard for me to take care of myself and my children. My x traveled extensively and it was up to me to man the fort. I feel I did a great job with my children. They are soon to have birthdays - a daughter 23 and a son 20. I experienced a very bitter divorce and I had to go to trial and it took me 21 months to get the divorce.
I am married today to a wonderful caring man. There are almost no jobs out there that I can do anymore. My husband has a career and travels at times. I feel good about myself, but feel very isolated due to my health issues. My x testified in divorce court that I was perfectly normal and that I could do anything that anybody else could do. This hurt me deeply. He went through this tragic ordeal and could lie to the devoted wife that I was to him. Although I have forgiven, I still haven't forgotten. Life goes on. No matter how many times I get knocked down with illness, I get back up and get back to exercise again. I developed many friends in my single life. But now that I'm married approx 1 1/2 yrs old single friends don't feel comfortable anymore and I need new married friends.
I wish I had someone to relate to. Even though my husband is my best friend, we still need healthy relationships with others. I have no family here, with the exception of my children that I see occasionally. My husband has no family here either. We are alone now. Free to travel and have fun now. I was hoping I could find a good e-pal. Thank you for your time and may God Bless you.

Name :: Pat Stanton       

Story ::    I don't know if I am in the right place or not. About 3 years ago, I developed horemonal migraines.I am 53 years old. My neurologist perscribed Frova (a triptan) and Vioxx whenver I had a migraine. I average about 8-10 pills per month.I am also on HRT-estrace. I slowly started to develop skin problems. I lost most of my body hair, my skin became dry and taut, and I developed colorless, white small patches on my skin(looks pigmentless.) I lived with this for about 2 years. Then 8 months ago, when playing golf,my skin exposed to the sun turned bright red and a itchy rash developed on my skin wherever it was exposed to the sun. I thought I might be allergic to the sunblock. It was not that. I can't be out of the sun for more than 10 minutes without a sun reaction. I have been to 2 dermatologists and an allergist who can't rpovide me with any answers.I tested negative for lupus. I have done some research on the web and found out that I might be allergic to the Vioxx. I am allergic to sulfonamides. I also have become allergic to my hair dye(to cover the grey). I have stopped both the hair dye and the vioxx. Does anyone on this list think it might be connected to the vioxx? Thank you

Name :: Belinda Haskins       

Story ::    This is not my story but my friends story. In October of 2003 he was diagnosed with cancer. He had surgery on his throat and they removed a lump and some lymphnodes. The only cancer found was in the large mass and all the other lymphnodes removed were non malignant. He started radiation treatments in December 2003. It was set up for 30 day treament everyday. The treatment was to be from his neck up. His final treatment was January 5th and that evening he started running a fever. He had already had other symptoms from his radiation treatment but had never run a fever before. He had lost 25 lbs already and his skin was burnt like a sunburn, his mouth had lots of mucous and was beginning to have a terrible odor almost like a dead animal smell. Things just didnt seem right to me and his sister. We got him into his oncologist who when he saw him scared us something terrible. He said he had never seen any reaction like this before from radiation. He called in the infection control doctor who also was not sure what it was. They started him on antibiotics and also fluids he had become dehydrated also. He also stared breaking out in a rash on his back arms legs and eventually was just about everywhere.
No one really has ever said it was Stevens Johnson Syndrome but his sister and I after investigating have come to the conlusion that has to be what it was. They did stop all his medications he was on. The 10 days he was an inpatient he was treated for severe burns. He broke out in blisters, his ears were very infected and eyes. He was treated as a severe burn victim. I guess I just would like to know is there is anyone else out there who has had this type of reaction to radiation? It is now June of 2004 and he is in speech therapy. He has not eaten solid foods since Dec 11 2003 when he had a G tube put in. He was having problems swallowing 2 weeks after he started his radiation therapy. He has gone thru many stages of depression. I guess because he really was never given a reason of why this happened to him. He still has a swollen throat and lots of mucous in mouth area. I guess we are just looking for a light at the end of the tunnel. I feel for all of you who have had to go thru what this disease has done to your life God Bless all of you Belinda

Name :: Jessica Johnson       

Story ::    In May of 1985, at the age of 6, I was diagnosed with SJS after having a severe allergic reaction to penicillen. My Mom has told me that at first they did not know what I had. I had broken out in what looked like chicken pox, and at first that was how my pediatrician treated it. My skin broke out in blisters that covered every inch of my body. It wasn't until I complained of the unbearable pain and burning that was caused when I went to the bathroom that my mother took me into the hospital. Once there they had no idea what was wrong. They were able to determine that I was having an allergic reation to a drug, but it would be days before they would diagnose me with SJS. Once diagnosed I was move to another hospital that had a burn unit. I spent 3 weeks in the burn unit, where my Mom says she watched in horror as my lungs collapsed, my kidneys began to fail, and my skin was severly burned from my knees to my head. I went into a coma during this time, which the doctors told my parents was actually a blessing. After 3 weeks I came to and slowly began to recover. I spent another week in ICU before being allowed to go home.
When I first returned home I was totally blind due to the damage that SJS had done to my eyes. I spent the next year of my life in total darkness. In September of that year I was supposed to start the first grade. My parents were at a loss on how this was going to take place. After doing research on her own, my Aunt put my parents in contact with several people that helped my mother decide what would be best course of action as far as my schooling went. I was home schooled for the first semester of that year. I had a teacher that came in to teach the regular subjects that every other student was getting to experience and another teacher that came in and taught me how to read and write braille. After the Christmas holidays they mainstreamed me into the public school system and into regular classes. The teacher that taught me braille also taught my first grade teacher how to read it as well so that she could grade my work. Everyone had gone in before I came to class in order to explain everything to the rest of the students and faculty there at my elementary school.
In the summer of 1986 I was fortunate enough to get some sight back, however,I was still diagnosed as being legally blind in both eyes. I spent the next semester learning to actually read words instead of braille. I was able to do this by using a hand-held magnifier. From that time on that is exactly how I manuevered through school.
School was of course probably the most difficult part of growing up. Children can be so cruel when they want to be, and the fact that I was visually impaired made me the perfect target for many insults during that time. SJS also left me without tear glands, therefore, I suffer from the dry- eye syndrome that so many other survivors of this horrible illness face. However, I am fortunate to have the love and support of a wonderful family that has always been there for me, and encouraged me to try everything that I wanted to. My mother especially has been a great source of strength for me, because she has encouraged me when I needed it, and forced me to stop feeling sorry for myself the few times I tried to. I firmly believe that it is because of my family that I am the person I am today. I graduated high school in 1997 and went to attend college away from home. I recieved my Bachelor of Arts having majored in English in April of 2001. From there I went on to do a year of law school several states away from home and everyone that I knew. During this time I married a wonderful man that I had met during my third year in college. After my first year of law I came to the realization that my heart just wasn't in it. This had nothing to do with my vision and if anyone reading this feels that they want to pursue a career in law, GO FOR IT! My reasons were entirely based upon the realization that I did not want to become a lawyer and spend the rest of my life in that field. My heart is in the field of education. I have since come back home and began substitute teaching and taking classes so that one day I can teach.
For the past 19 years I have tried very hard not to let my being visually impaired stand in my way. During my childhood I did everthing that every child on the block was doing, such as riding bikes and rollerskating. Today I am a certified scuba diver, and in my opinion the only thing I can not do is drive a car, but everything else I do, and I do it by myself. For any parents reading this that has a child that has survived SJS and has unfortunately been left with a vision problem, please don't be afraid to let your child try things for themselves. They know their vision better than anyone else and they if they can't do it, they won't, but they need to have the chance to find that out for themselves.
I am not going to say that I am happy that I was one of the many that went through this illness, but I am going to say that I think that the experience and the reprecussions that it leaves with it's survivors has helped me to become who I am today. If you can learn to accept the life you are lef with afterwards than you have truly survived. I thank God everyday for being allowed to live and have the life that I have. I hope that you do too. Please feel free to e-mail me anytime, and for parents that are just going through this and would like to hear from another parent that has gone through it, please don't hesitate to e-mail me either and I can put you in contact with my mother. Since this has happened to us we have met one other little girl that was even more severly affected than I was, and my mother was able to give her mother some comfort.

Name :: ezequiel       

Story ::    cuando tenia 3 años mi hijito despues de administrarle una aspirineta empezo a ampollarse en la zona genital y en el rostro los medicos me decian que podia ser del higado o bien una varicela ,le limpiaba la zona con iodopovidona y le agregaba gentamicina en crema a los 2 dias desperte con pedazos de piel en mi brazo donde el dormia ,cuando lo vi tenia los ojos cerrados de tanta pus ,los orificios nasales,e, igual que la boca ,se lo interno con este diagnostico , pero el medico que luego lo atendio en ese sanatorio lo desmintio acuzandome que si el tenia esa enfermedad moriria , llego a tener cerca de 29000 globulos blancos ,me decian que no era esta enfermedad si no que era una varicela sobreinfectada a los 5 dias despues de someterlo a baños sulfatados la escamacion y ampollamiento desaparece ,le dan el alta medico no con mi consentimiento a las 2 horas estaba con ampollas duras en las manos ,pies y cabeza esto se le abrio y ocupo todo el cuerpito no caminaba se arrastraba y cuando el sol daba sobre esa zona se le agujeriaba supuraba constantemente y sangraba los medicos no entraban a la habitacion peleaba constantemente con ellos por no darle importancia y habernos tirado asi, ni la higienizaban ,y la comida me la daban desde afuera asi pasaron 303 medicos con diferentes diagnosticos 3 de ellos me aseguraron el steven y me lo pudieron sacar en ese momento despues de 3 meses de una lucha desesperada por salvarle la vida me dijeron que se tubo que haber hecho una tranfucion pero ya no se podia eso era 3 meses antes ahora tiene 10 años tuvo ya 18 neumonias y es asmatico y nadie sabe responderme si esta curado.

Name :: rere      

Story ::    My name is rere, I'm from Indonesia. I have daughter who suffered this syndrome. She is 3 years old. When she'is in hopital I thought I'd lost her. Now, she recovers but she's blind now. I need some information about this. Please if anyone knows about it, contact me. I really need your help. Thank you...

Name :: ostrichlegs      

Story ::    in march 2004, i went to er to get pain relief from L arm from infectious phlebitis, red streaks and inflammed causing pain. I was given ANCEF a antibiotic IV and about 6 minutes after that I had a flame in my stomach, nausea, and sweat ran off me like a waterfall instantly. The rn layed me down and i thought my body was going to blow up from the inside out and kept increaasing. all she did was take my BP was 165/123. and left me there still in the reaction, no countermeasure was ever taken. I couldn't walk out of the hospital, the ancef or reaction to, paralyzzed me. for four months I have had no work, limited income have a wife and a 8 year old daughter. and whats worse i am a medical professional myself for 13 years and i know when somethings wrong and being treated wrong. neurology x 5, inf dis x 2, starting to wonder if this could be ??conversion reaction?? still have diff. walking, every time i go to the hospital and slowly try to recooperate, i crash and back in the hosp. PLEASE, PLEASE LET ME KNOW OF ANY INFO YOU MAY HAVE OR CONTANCTS, NO-NO DOCTOR HAS LED ME ANYWHERE TO CORRECTLY DIAGNOSE WHAT THE PROBLEM(S) IS???
Thank You , Ken

Name :: Matt Mitchell      

Story ::    I am 26 years of age and was recently diagnosed with SJS. It all started with really itchy eye's, i though I was getting some conjunctive itis. Later that night my heals and palms became really itchy, i finally woke in the morning with a swollen face (mainly lips) and red dots all over my arms and torso.
My partner took me to the emergency center thinking that I had chicken pox. The Doctor that examind me also though that it was chicken pox too.
To cut a very very long story short, the doctors did'nt really know what it was and after some internet reasearch on my dads behalf and numerous phone calls to my GP they discoverd that SJS was most likley to be the condition that I was suffering.One day later saw blisters come up all over my body, my eyes were swollen shut and my mouth and throat just as bad.
Steroids were used to help me get over this and I thank My Dad and my GP for diagnoising this quickly so I could start treatment. I was in hospital for 10 days. Now im at home (2 weeks) still very sore in the mouth and lips. My eyes are also very sore. It feels like Im a snake that has just shed its skin.
Also just to let you know if your taking steroids to help you over this make sure you doctor decreases the strenght very gradually or you run the risk of it comming back. This of course is up to your doctor, but I know this from exeprience.
You might also like to know what triggered the SJS attack in my opinion ZYBAN (quit smoking drug. The doctor thinks Zyban is probably the cause too (98% sure).
Ps would like to thank Mum, Dad, Jason, Fran, Jonno for helping me through this. THANKS.

Name :: Bernita Parker      

Story ::    My story is not as bad as some but is having lasting effects. I was diagnosed with SJS about 1978. I had severe blistering in the mouth and couldn't eat or barely drink water. The DR was going to put me in the hospital after about 3 weeks of this when it suddenly started getting better. He admitted to not knowing what was causing it. I had another episode a couple of years later and the DR I was going to at the time sent me to a dermatologist. He diagnosed it as SJS.
My current DR, though knowing I have SJS, has repetedly given me medication that caused a reaction. He just changes medicines and continues. He doesn't seem to feel SJS is very serious.
At the present time, he has diagnosed me with high blood pressure but the medication he put me on for that has caused a reaction.
SJS has made me very sensitive to most conventional medicines and, as with the blood pressure issue, puts me in jeapardy healthwise.
I am scared to death of getting sick and needing medication because the DRs in this area seem to be totally unaware of the severity of SJS. When I tell them I can't take many medications, they ask me, What can you take? Doesn't this sound like something the DR should find out?

Name :: Dotty Arola       

Story ::    My husband, John, died as a direct result of SJS March 19, 1998. The drug involved was Dilantin, prescribed after a seizure caused by glioblastoma multimformae (brain tumor). The initial SJS symptoms began 2 days after the doctor informed us that we could level off the amount of Dilantin, that the proper blood levels had been reached. Up to this point the doctor continued to increase the amount of pills given in order to reach that blood level.
John entered the hospital (St. Johns, Oxnard, California) on a Saturday, was in intensive care with a central line by Sunday, mid-day. He stayed in intensive care for almost a week, before they realized the amount of skin loss was beyond what they could handle. At that time he was transferred to the Grossman Burn center in Los Angeles. John died 5 days later.
His external skin loss was 80% and internal skin was at least that or higher. Actual cause of death was listed as septecimia (sp?). John was 53 when he died.

Name :: Teresa Matin       

Story ::     Last year July 2003 my daughter Sarah was diagnosed with SJS/TEN she is now 10 years old.She had been running a fever for a couple of days and her eyes were red so i called the doctor and they said to bring her in.The doctor seen her and took a blood culture and diagnosed her with Strep Throat and perscribed amoxicillin and childrens motrin for fever.We got her medicines and she took one dose of each and it started.She started breaking out with blisters on her forhead and so i called the doctor on call and the nurse asked what was wrong so i told her and she told me that this was part of Strept Troat. I was cooking supper and when it was done i asked her if she wanted to eat she said no she didn't feel like it.So we ate and about 30 minutes later she hallored for me and said mommy i feel like i can't breath so i called the nurse on call and she said it sounded like she was having an allergic reaction to the meds. She told me to let the ambulance come and get her so they could start adminersting to her and they did.So the hospital checks her out and say's yea it's an allergic reaction and she does not have Strep Throat so they give her IV's [fluids]and benedril and pepcid ac for the allergic reaction and sent her home and said that she had a standing walk-in appt.with her doctor and to give her childrens motrin and benedril at 6:00 in the morning.We stayed up until then so we could give her meds to her then we layed down we had been up all night with her.When we woke up we took her to the doctor and by this time the blisters were all over her body some where so large they covered her entire arm.So one doctor looked at her and said he wasn't sure and asked if a nother doctor could looke at her so he did and soon as he seen her he said she had SJS/TEN and sent her straight to the hospital her temp was 106.9 she stayed at that hosp.for about 4hrs.maby a little longer and then i had her transported at my request to WAKE FOREST BAPTIST MEDICAL CENTER AND UNIVERSITY.She was put in Childrens Brenner Hospital there and they said she need to go to the burn unit she was there for 3 days and they sent her to the PICU [Pediactrics Intensive Care Unit] and she was there for 5 weeks 4 of those she was on a ventulator and a feeding tube was put down her and had to have a blood transfusion and her eye-lids where scrapped from day one at the Baptist. They said she had a 15%of living.She looked like someone had held her up by her nostrils and blowed her with a blow torch it was the worst thing i have ever seen and i prayed for god to take my little girl and not let her suffer or to put me in her place or to heal her and he answred my prayers because when she was put in the picu unit you had to have a code to get in and out of the unit the code they gave me was 1018 and as soon as they said it i knew she was going to be alright cause her paw-paw was watching over her you see that code was my dad's birthday and he died in 1997. Sarah spent from July 28th 2003 til Sept.9th 2003 in the hospital with SJS/TEN and we are still going through the after effects and the damage that it has left.She had to have her throat stretched and it severly damaged her eyes'she has to have a stem cell transplant and a cornea transplant on her right eye and she just had lid surgery upper and lower on her left this past friday.My prayers go out to anyone that has had SJS/TEN or their loved one that has had it. We live in High Point North Carolina 336-869-3475

Name :: Angela Bruno       

Story ::     I had recent experience with SJS including a torso rash, mild fever, and apparent viral infection including conjunctivitis of the eyes. The rash has been going away, but any sun exposure and it comes back full force. The doctors concluded that it was a reaction to the drug Wellbutrin but are not 100% sure since I am on many other medications. Another newer drug injection I am on is Enbrel, however my dermatologists do NOT think this is the culprit...but I wonder. I am currently off of Wellbutrin but still taking the Enbrel injections. I know very little about SJS - if anyone has a similar story or experience with either of these drugs, I would love to hear from you! What is odd is that I experienced a similar SJS episode last summer after sun exposure (when I was not on these medications)! Can this condition recur over time even if you are off of the drug that caused it? Is your skin photosensitive and for how long after you experience this condition? Any feedback would be so greatly appreciated!

Name :: Jackie Palinchik       

Story ::     My brother was born in 1964 & I was 13 at the time. I remember him vomiting his formula like a water fountain everytime he was fed. I'd say he was 2-6 mo. old. We took him to our hometown pediatrician who told my parents he didn't know what was wrong & sent him to Akron Children's Hospital in Ohio. There a specialist took care of him that also made his own medicine. At the time, there was 5 cases in the US. & my brother was the only one that survived because he didn't have it internally. They caught it quick enough that it only affected his skin. He is supposedly in the medical books or documents on this disease. He is living & well today with no side effects. However, nobody ever said it was due to any medication!!! I don't think he was on any meds because until this he was a healthy baby. My Mom had diabetes & delilvered him at 8mo.

Name :: Helena Eden       

Story ::    This happend to my fiance (we both live in Sweden). In Febuary (2004) he cought a cold and his lymphatic gland under his left ear began to swell. By the evening it was so swollen it hurt and we contacted the ER and they adviced us to come in so they could have a look at it. The doctor who looked at it said he needed penicillin and gave him Kavepenin (common in Sweden for all sorts of bacterial infections). He was supposed to take 500 mg twice a day and on the 3rd day I began to notices rashes on his shoulders and later that day he found them on his hands. They were itching really bad.
On the 4th day his hands started swelling, then his arms, shoulders and his face. The rashes got bigger and itching more. He also gained weight fast, 12 pounds in 4 hours from all fluid kept in his body. We rushed back to the ER and they, surprisingly enough, diagnosed him with SJS within a couple of hours. We later found out that one of the doctors treating him had SJS himself. He was given cortisone oraly and medication (Cetirizin) and he has been taking them ever since. If he forgets to take them the rashes and itching comes back within hours.
Our family doctor think it was because of his age (27) and his bodysize that it took so long for the symtoms to occur. A friend did some research on SJS and came up with this website, which have been a very good help to understand this syndrom and it was a relief to find out that he is not alone.

Name :: Brandy Anderson       

Story ::     Hi I am a 21 year old college student from SC. I was diagnosed with SJS about eight years ago when I was only 13 yrs old. I went to a local hospital in my home town, but they didn't know what the rashes that had been coming over my body was from. Because of the massive swelling the local hospital sent me to a bigger hospital in the city next to my home town. That's when they diagnosed me with SJS. This hospital knew that I didn't have long to fight for my life so they sent me to the University of North Carolina in Chapel Hill which had the closest burn unit. At this time the doctor informed my mother that her only child my not have a strong chance of survival. At the UNC CH burn unit my doctors did every thing possible to save my life and my eyes. Two months later I was released from the hospital with very bad scaring and damaged eyes, however I had my life and my eye sight. Now my skin has evened out a lot more, but my eyes are very sensitive to light and they tear all of the time. This is my SJS success story thank you for allowing me to share it.

Name:: karen baker      

Story::    My name is Karen and i live in London.On the 27th July i suffered a reaction to penicillin and ended up with SJS.My skin has gone through all the peeling and i am feeling very sensitive outside and inside of my body.It felt like i was on fire and until i received steroid treatment i thought i was going to die!!I have been signed off work for the next two months and feel like ive been run over.I would appreciate it if you could contact me with your advice because its so rare here that none of my Doctors had seen it before only in textbooks!It seems more widespread in America and you may be able to tell me some of the long term side effects i might have to deal with.I look forward to receiving your replies and advice.Thank you!

Name:: Addie      

Story::    Just this July 2, 2004, I was diagnosed with SJS. I Woke up on morning because my throat was hurting extremely bad, and my lips were swollen, and my eyes were slightly red. My mom took me to the doctor, and they ruled out everything from strep throat to Mono. They took some blood and told me the samples would be back in the morning. That next morning I woke up and My lips had swollen alot more, My eyes where brick red(no whiteness at all), and I had bumps everywhere on my body. That night I went to the emergency room, with a temp of 105.2. My bumps started to blister and my skin was sloughing off. I was in the worst pain of my life, I couldn't walk, eat or do anything. The next day the decided to admit me to the Burn Center in Augusta because I was burning from the inside out. Not only was my skin sloughing off but my throat was too, and it was going in my lungs. They preformed surgery on me on the 4th of July. Now I have burn scars all over my body, but I have healed completely as far as everything else. I had to learn how to do everything over from eating to walking. I am happy that I am better. I had such a severe case, but my healing is miraculas. The Lord was truly with me.

Name :: Paula Funez       

Story ::    Hi, My name is Paula. When i was only 9 years old I was diagnosed with Stevens Johnson Syndrome. I nearly died from it and was in the hospital for several months until i got better and my blisters went away. I was left with stains on my body for nearly a year. Now at 22, my skin is fully back to normal and thankfully i survived this nearly death experience.
I developed this syndrome after having a severe fever and often fainting. My family quickly took me to the hospital where the doctor assumed i was epileptic and prescribed me an adult dosage of Epimin (for epilapsy). Thereafter, I became allergic to the medicine. This was obviously a case of medical malfunction.

Name :: Anjanitte' Steele       

Story ::    I'm 13,one morning I woke up with blisters all over my face and body ,I was really red and my lips were swollen like 2 or 3 times their regular size.I was real hot and weak ,I could barely walk. When my mother took me to the hospital,they didn't know what the case was.So I was admitted to another hospital called Children's Medical Center. I was in alot of pain,my throat was real sore and my mouth had blisters, and it was hard for me to swallow.I started turning redder than I already was.I was put in a hospital room for a week. I couldn't eat or drink, I could barely get up to go to the bathroom.My skin started peeling really bad ,I thought it was nasty ,but my mother told me that it was a good thing because when it peels it's helping my skin to slowly get better.I had to have morphine every 2 hours and IV fluids every 1 or 2 hours. Like maybe 3 or 4 days into my stay in the hospital,I found out that I had been diagnosed with SJS.When I first saw this on me face and body, I cried and thought to myself that my looks were gone, but my mother helped me realize that no matter what ,I was still beautiful. She helped me get through all of this ,and my brother was a really big help too because he stayed with me in the hospital some days and kept me company and we made the best of it.I love my brother ,mother ,and step-dad dearly because they were by me through all of this and they helped me make it through.I'm doing really good now, my face and neck are coming back to it's natural color,but my stomach and back still have some recovery, and my doctor says that I will heal in several months .I'm just glad that God blessed to where it didn't spread throughout my entire body,and I thank him everyday because I know that I am truly blessed.

Name :: Armond Borders      

Story ::    Hi, my name is Armond Borders. I first discovered I had SJS when I was in the 5th grade. I was given penicilin for a sickness. I had taken it before when I was younger. When I first got the symptoms we didn't know what to do. My mouth started breaking out and swelling up. My mouth looked like a big scab. I could not swallow, eat, and I started developing scabs in the corner of my eyes. I laid in the bed for 3 days and my mother finally took me to Scottish Rite Hospital. When I got there they kept trying to diagnose me with Herpes. Asking me if I was sexually active. I kept telling them no, but they still kept asking. They did blood work and tried different medications. Finally someone came in and suggested that I had SJS. They diagnosed me in time before things got worse. The only thing I knew I was allergic to was medications in the penicillin family and sulphur based drugs. Six years later I got Strep Throat. I went to the doctor and told him I had SJS. He prescribed me Cephalasporins to take. One day later I started having the same complications as I did the first time. This time when I went to the hospital they knew how to treat me. I had to have IV's stuck in me daily. Today I am 25 years old and have fully recovered. To be on the safe side I don't take any antibiotics and only take Herbal medicines such as Ginger root tea for colds. I would like to know if any medications have been found that SJS patients can take. I also wear a medical dog tag around my neck in case something happens. Please respond and let me know what new news has been found about medications.

Name :: Norbert Rodillas      

Story ::    I read the article written by Stephen Byrnes on Stephen Johnson Syndrome, and was very glad to know about other victims stories who have this awful disease. I am currently in Moreno Valley, California, and will be returning to Honolulu. SJS has caused me to be a disabled adult of 60, and without vision in both eyes as a result of my corneas being burnt off by SJS. I was tug boat crewman in Hawaii when I took the disease in 1992. At first, I thought I had the flu. My body ached and I was always exhausted. Because I worked on the decks of my tugboat without a shirt, the blisters were around my neck and shoulders. I thought nothing of this, since I was working without a shirt. When I returned to port in Honolulu, I checked myself into a hospital because I felt miserable with what I thought was probably a severe case of the flu. Immediately after being admitted into the hospital, my throat, lips, and mouth began to blister. I could not swallow nor eat. and no doctor knew what was wrong with me. Blood was drawn from me for several days, yet no diagnosis came.My blood was examined by allergists, toxicologists, and other specialists, and after a couple of weeks, someone told my Internist that I had SJS. I was told that my condition was precipitated by my body's reaction to two drugs--Allupurinol which I took for gout, and Maxide. My doctors agreed that these two drugs caused my affliction. I had been taking these two drugs only for a short while prior to my entering the hospital. Unfortunately, not knowing what I had, the doctors did not take me off those two meds for nearly two weeks after admission and quarantined. Soon after I was released, I lost the sight of my left eye, and gradually the sight deteriorated with the right eye. My fingernails and toenails dropped off, but have returned, but in deformed shaped. My tear ducts have dried up and I have to lubricate my eyes constantly.
Learning about the University of Southern California's Doheny Eye Institute, and it reputation for eye care, I have returned for a second visit. Three years ago, I sought stem-cel treatment for my cornea, but infection set in and the treatment failed. I just saw my team of doctors again last week and they have given me hope. I am going back to Hawaii next week, and will return in October for further examinations and consultations. We are planning for another cel transplant. My team of doctors are also teachers at the Institute, and they are continually doing research. One of my doctors is the leading researcher and surgeon at USC's Doheny Eye Institute regarding cel transplant and Steven Johnson Syndrome. He also has done a lot of research with dryness of the eyes--common result of tear ducts drying up.I'm glad that I did not have any of my eyes removed, as was suggested several years back. I can see glimpses of light in both eyes when looking at lamps, flashlights, and even a full moon, but no vision.
Please let me know about the foundation as I would like to be a part of an organization that provides awareness of a rare disease that seems to be gaining attention as others are reporting their experiences with drug/meds reactions. Contact me via email address with this letter.
Thank you, Norbert Rodillas, Honolulu, Hawaii

Name :: anastasia davis      

Story ::    About 8 years ago i was in the E.R. for a kidney stone and was treated and sent home with Bactrim, within 45 minutes of taking the first Bactrim, I felt a horrible itching and burning in my vaginal area, when i would urinate it would burn the membranes in that area, i finally took a mirror and took a look below, because at this point it felt like crushed glass was caught in my membranes of that area . What i saw terrified me, my skin had swollen and cracked from the severe swelling. Urinating had become so unbearable that I had to fill a bathtub full of water to be able to go, it was very painful. I decided to go to the hospital, when i was taken into the E.R. the doctor on duty wanted to perform a pelvic exam, i said it would be too painful, but went ahead and let her, she tore my skin so badly and told me that she could tell by looking that I had Herpes, I wqas devastated, I told her that I was still a virgin and not been sexually active, this doctor told me---"Yeah,right." I had mentioned that it started right after I took the Bactrim, she said I was being argumentative and told me that she knows what she's talking about. So, I left the hospital and it took about 2 weeks for the reaction to subside, it was the worst 2 weeks of my life, and I had never been so humiliated and I am now leery of E.R. Doctors. Aboput 5 years after that I was reading a medical book and saw that ,although rare that Bactrim/Sulfanomide can cause this Stevens-Johnson Syndrome, when I read about all the symtoms--with the horrid skin sloughing and swelling, I knew then that I was justified in thinking that I didn't have Herpes and that it was a bad reaction to the Bactrim. I find that many doctors don't even know about this, and are NOT quick to listen to suggestions. That's my story and I wouldn't wish this terrble reaction on my worst enemy.

Name :: Kathy Bruno       

Story ::    Our daughter, Rachel, was diagnosed with SJS last October. She is fine now, but they weren't able to verify the cause, which makes me nervous that she might get it again. A week or so prior to SJS, she had a rash called acrodermatitis, which is a symton to a chicken pox virus. She was given ELIDEL cream for the rash. Do you think the SJS was caused from the virus or the ELIDEL cream? Have there been any cases involving ELIDEL? Thanks for your help. Kathy

Name :: martha      

Story ::    I have read all your heart felt stories, my mother died from SJS on 17 may 2004, all the family are deeply upset and still in shock. We had never heard of this disease before. The hardest thing for me is the pain she must have felt she was treated as a burn patient and had blisters all over her body, the meds she was allergic to was epinutim, she had brain surgery and was doing brilliant untill she was allergic to these meds,the docter was called twice but he had not a clue what was wrong and gave her cream for her skin and mouth lozengers. I think he thought she was allergic to the washing powder, eventually an ambulance was called, she was in the icu for one week but then passed away. It all happened so fast its hard to believe shes gone. im at home at the moment and the house is empty without her. im glad i came accross this site and I wish all of you the very best.

Name :: SHELLY SEIBOLD      

Story ::    IN JAN. 2001 I HAD BEEN ON BACTRIM DS TOOK 20 PILLS THEN MY LEFT SIDE OF MY FACE STARTING TO GET RED AND MY EAR. BY THE TIME I WENT TO THE HOSPITAL I COULDNT HARDLY SEE MY EYES WERE BLURRY I HAD 2ND DEGREE BURNS ON MY BODY MY EYES AND MY TORSO. I WAS BURNT UP IN SIDE AND OUT I HAD BLISTERS ON THE OUT SIDE OF MY MOUT AND IN SIDE TO.IN FACT I THUGHT I WAS GOING TO DIE I HAD NO STRENGTH AND NO TASTE I WAS SO WEAK I ABOUT FELL EVERYTIME I TRIED TO STAND UP. I WAS ON STEROIDS FOR A WEEK BEFORE WAS PUT IN THE HOSPITAL. I WENT 11 DAYS BEFORE THEY HOSPITALIZED ME I WAS STARTING TO TURN PURPLE. I WAS SO MISERABLE I ASKED GOD WHY ME I DO HAVE PICS I STILL CARRY AROUND AND THE LOCAL MEDIA DID A STORY ON ME I DO HAVE A VIDEO. I HAD NEVER HEARD OF SJS TIL THE DR TOLD ME I HAVE IT. I STILL DONT KNOW ALOT ABOUT IT BUT I DO THAK GOD IM HERE TO TELL MY STORY IF THERE IS ANYONE OUT THERE THAT WOULD LIKE TO KEEP IN TOUCH WITH ME PLZ FEEL FREE TO DO SO.I WOULD LIKE TO LEARN MORE ABOUT THIS DISEASE IM ALLERGIC TO ABOUT 9 ANTIBOTICS I HEARD THERES NO CURE AND I CAN DIE FRM THIS DISEASE SO I KNOW WHAT ALOT OF U PPL HAVE BEEN THRU....MAY GOD BLESS THIS FOUNDATIN AND EACH ONE OF U.....

Name :: Vanessa Guerra       

Story ::    Hello my name is Vanessa Guerra i am 22 yrs old and i just got out of the hospital today from haveing SJS. Late last week i was prescribed the antibiotic Bactrim because i had a UTI (urinary tract infection). I noticed the next day after takeing my 1st dose of my Bactrim my upper lip was completely
numb and very swollen, I tried not to think much of it figured it would go away. Later that day family started asking me what was wrong with my left eye because it looked so droopy, again i shruged it off. the next day i awoke and my upper lip had doubled in size and was bombarded with extremely painful blisters i could barely talk and i had a sudden inflamation around my abdominal area pants that just fit me very lose the day before now wouldn't go around my waste. I also noticed a bad burning sensation in my vagina when i would urinate i had blisters there too. I was in so much pain i was rushed to the hospital. The doctor quickly told me he feared i was suffering from SJS an allergic reaction
to Sulfa found in Bactrim. I was hospitalized for 3 days n 3 nights getting lots of steriods and a diff antiobiotic through my i.v. Eventually my swollen face and lips went down and the doctor thought it was safe enough to go home and finish recovering sending me home with some steriod packs. Oh and something i left out i had the swelling throat occue which made it very hard to drink eat and breath. This is my 1st day back home and i hate that i kind of feel the same if just a tad better then when i walked in the er, but i'm trusting my doctor in him telling me it's safe to come home. But after reading some of the stories and looking at some of the photos i can't help but fear i may not be recovering like
i should. I do a follow up with my Dr. day after tommarrow i'll be sure to let him know how i feel. It is truely painful to suffer from SJS and to think i'm not as nearly bad as some of the stories i read my sympathy and heart are with those of you that have or have had SJS. God Bless you.

Name :: Johan Kroucamp       

Story

Name :: JOYCE JOSEPH        

Story ::    I AM A 52 YEAR OLD WOMAN, WITH NORMAL BLOOD PRESSURE, LOW CHOLESTEROL AND NO HEART DISEASE OR CANCER.
I HAD HAD ARTHROSCOPIC SURGERY ON MY RIGHT KNEE, 9/17/03 FOR PROOF TO MY MEDICAL INSURER THAT MY KNEE NEEDED TO BE REPLACED. AT FIRST, ALL WENT WELL WITH THE SURGERY AND THE SURGEON WAS IN THE PROCESS OF GETTING PRE-AUTHORIZATION FROM OUR INSURANCE FOR A TOTAL KNEE REPLACEMENT. HOWEVER. INSTEAD OF GETTING BETTER MY KNEE BEGAN TO SWELL AND HURT AND DEVEOPED PUCKERS ON THE 2 TINY STITCHES WHICH WERE FROM THE USE USE OF THE ARTHROSCOPE. ONE DAY ONE STITCH JUST STARTED TO TRICKLE PALE REDISH FLUID DOWN MY LEG. I HAD BEEN RUNNIG A LOW GRADE FEVER FOR 2 DAYS BEFORE THE STITCH BURST. MY WHOLE LEG BECAME RED AND SWOLLEN IN A MATTER OF HOURS AND THE NEXT DAY MY HUSBAND TOOK ME TO THE SURGEON ON AN EMERGENCY APPOINTMENT. HE WITHDREW ABOUT ONE PINT OF THE PALE REDISH LIQUID FROM MY KNEE, WHICH HARDLY MADE A DENT IN THE SWELLING. HE SENT IT TO THE LAB FOR A RUSH ANALYSIS. THE NEXT MORNING THE DOCTOR CALLED AND TOLD ME TO REPORT TO THE HOSPITAL ASAP FOR EMERGENCY SURGERY.
I WAS ADMITTED AND PUT UNDER IN LESS THAN AN HOUR. WHEN I AWOKE, I FOUND THAT MY KNEE HAD TO BE OPENED ALL THE WAY, AS IF I WERE HAVING A REPLACEMENT SURGERY, BUT ALL THIS SURGERY WAS TO SAVE MY LEG WHICH HAD A SEVERE, ANTI-BIOTIC STRAIN OF STAFF WHICH LEFT UNTREATED WOULD HAVE RESULTED IN THE LOSS OF MY LEG FROM JUST ABOVE THE KNEE FROM ACUTE SEPSIS. A CDC REP WAS CONSULTED AND SINCE I HAD NEVER HAD AN ALLERGIC REACTION TO PENICILLAN BEFORE, PUT ME ON AN I.V. DRIP OF OXYCILLAN (A HIGHLY CONCENTRATED FORM OF PURE PENICILLAN). I WAS SENT HOME WITH A PIK LINE AND HAD TO GIVE MYSELF AN I.V. PUSH OF 1000MG OF OXYCILLAN 3 TIMES PER DAY.
I BEGAN TO FEEL BETTER AFTER THE 4TH DAY OF TREATMENT, BUT I DEVEOPED STOMACH CRAMPS AND SEVERE DIAHRREA. THE DOCTOR SAID THIS WAS NOT UNUSUAL FOR SUCH A HIGH DOSE OF ANTIBIOTIC BEING INJECTED DIRECTLY INTO MY BLOODSTREAM. THIS WENT ON FOR ONE DAY SHORT OF 3 FULL WEEKS, WHEN I SUDDENLY DEVEOPED A FEVER OF 103, COULD NOT KEEP DOWN FOOD, HAD CONSTANT DIAHRREA AND BEGAN TO DEVELOP A RED RASH ON MY ARMS AND LEGS, WHICH IN A MATTER OF 4 HOURS BECAME SUFFERATING PUSTULES WHICH BROKE OPEN ON CONTACT WITH ANYTHING AND LEAKED FLUID WHICH CAUSED MORE RASHES, UNTIL MY ENTIRE BODY WAS COMPLTELY COVERED WITH ANGRY RED WELTS WHICH FELT EXACTLY LIKE GREASE BURNS. THEY BOTH BURNED AND ITCHED MIGHTILY FOR 24 STRAIGHT HOURS. WE HAD CALLED THE DOCTOR AS SOON AS THE RASH APPEARED, AFRAID THAT I WAS BECOMMING ALLERGIC TO THE OXYCILLAN OR PERHAPS A COMBINATION OF THAT ALONG WITH THE BEXTRA I WAS GIVEN TO REDUCE SWELLING AND INFLAMATION WITHIN MY KNEE.
BY THE TIME I ACTUALLY SAW THE DOCTOR THE NEXT MORNING THE RASH HAD SPREAD TO EVERYWHERE ON MY BODY INCLUDING INSIDE MY EYLIDS, NOSE, MOUTH AND INTO MY VAGINA AND MY ANUS. I WAS IN SO MUCH PAIN THAT I ASKED THAT DOCTOR TO GIVE ME SOMTHING TO KNOCK ME OUT COMPLETELY SO I COULD REST FOR A WHILE. I HAD HAD NO SLEEP AT ALL FOR OVER 21 HOURS STRAIGHT AND I THOUGHT FOR SURE THAT I WAS DYING. I HAD STOPPED THE I.V. PUSH AND QUIT TAKING THE BEXTRA AS SOON AS THE RASH DEVELOPED WITHOUT DOCTORS ORDERS BECAUSE I WAS AWARE THAT PENICILLAN ALLERGIES COULD CAUSE ANAPHYLACTIC REACTIONS. HOWEVER, AT THAT TIME I WAS TOTALLY UNAWARE OF STEVENS-JOHNSON SYNDROME AND MY SURGEON NEVER MENTION4D HOW BAD THINGS COULD GET. IN FACT, HE PLAYED IT DOWN TELLING ME THAT A RASH WAS A MINOR ALLERGIC REACTION TO A DRUG AND THAT IT WOULD DISAPPEAR WITHIN 48 HOURS OF CEASING THE DRUGS.
THIS WAS NOT THE CASE. I DEVELOPED PATCHES OF SKIN THAT APPEARED TO BE BURNED, (I FOUND OUT LATER THAT SOME WERE AS SEVERE AS A 3RD DEGREE BURN AND HAD BECOME INFECTED).
I WAS INSTRUCTED BY MY SURGEON TO USE HYDROCORTISONE AND COOL COMPRESSES ON THE BURNS AND WAS NEVER AGAN SEEN BY HIM FOR THIS HORRIBLE CONDITION. MY HUSBAND CALLED THE CDC DOC AND HE AGREED TO SEE ME AT THE HOSPITAL. HE NEVER USED THE TERM STEVEN-JOHNSON TO ME, BUT LATER I LEARNED THAT HE HAD WRITTEN IT ON MY CHART. I WAS RELEASED FROM THE HOSPITAL WITH A TUBE OF BACITRACIN AND SOME BURN CREAM WHICH WAS ONLY AFFECTIVE FOR 2ND DEGREE SUNBURNS. THE RASH BEGAN TO DIMINISH AFTER 2 AND 1/2 WEEKS, BUT I WAS LEFT WITH SCARS ALL OVER MY BODY THAT STILL ARE VISIBLE TODAY - ONE YEAR LATER. MY PCP TOLD ME THAT THESE ARE PERMANENT SCARS AND THAT THE DISCOLORATION WOULD NOT EVER GO AWAY. IT WASN'T UNTIL CHRISTMAS, AFTER READING AN ARTICLE IN READER'S DIGEST THAT WAS SO MUCH LIKE ME THAT I CALLED MY SURGEONS OFFICE TO FIND OUT IF THAT WAS WHAT I HAD EXPERIENCED. HE WAS RATHER CURT AND TOLD ME VERY COLDLY THAT I HAD EXPERIENCED A MILD CASE OF STEVENS-JOHNSON SYNDROME AND THAT THERE WAS NO OTHER TREATMENT FOR THIS PROBLEM OTHER THAN WHAT THEY HAD DONE AND NOT TO WORRY ABOUT IT ANY MORE.
THE RASH THAT GOT INTO MY EYES HAS RESULTED IN MY VISION BECOMMING 50% WORSE IN ONE EYE AND 25% WORSE IN THE OTHER. I CANNOT KEEP MY PRESCRIPTIONS CURRENT WITH THE DETERIORATION OF MY EYESIGHT.
I PRAY THAT THIS WOULD NEVER HAPPEN ANY ONE ELSE EVER. SINCE THIS EPISODE I LEARNED THAT OXYCILLAN AND BEXTRA WERE A LETHAL COMBINATION WHICH OFTEN CAUSED SEVERE CASES OF SJS.
I NOW HAVE A NEW KNEE SURGEON. I AM NOT SUING THE DOCTOR, THE HOSPITAL OR THE CDC DOCTOR AS ALL THE MONEY IN THE WORLD CANNOT CHANGE OR CURE THE SCARRING ON MY ARMS AND LEGS AND TORSO AND MY STEADY LOSS OF VISION. (SO FAR I AM NOT LOSING MY SIGHT BUT IT HAS BECOME SO BAD THAT I MUST WEAR GLASSES TO READ THE CAPITAL LETTERS I AM WRITING THIS LETTER WITH RIGHT NOW. I AM NOW TERRIFIED TO HAVE ANY FURTHER SURGERIES ON ANYTHING FOR FEAR THAT SJS MAY SUDDENLY APPEAR AGAIN.
THERE SHOULD BE BULLETINS SENT TO ALL SURGEONS THAT THEY WOULD BE REQUIRED TO READ AND STUDY BEFORE PERFORMING SURGERY AGAIN. I HAVE 2 SEVERLY ARTHRITIC KNEES (*NOT THE RESULT OF SJS) WHICH NEED TO BE REPLACED AND WHICH CAUSE ME ENDLESS PAIN EVERY DAY OF MY LIFE. I HAVE DEGENERATIVE ARTHRTIS IN MY SPINE WHICH WILL SON REQUIRE A SPINAL FUSION OF THE 5 DISCS THAT HAVE COLLAPSED AND ARE PRESSING AGAINST MY NERVES WHICH ALSO CAUSES EXTREME PAIN AO I DON'T KNOW HOW MUCH LONGER I WILL BE ABLE TO GET AROUND WITHOUT AN ELECTRIC WHEELCHAIR - YOU SEE, I HAVE A TORN ROTATOR CUFF IN MY LEFT SHOULDER WHICH ALSO REQUIRES SURGERY AND ALSO CAUSES ME A GREAT DEAL OF DAILY PAIN.
HOW DO I KNOW THAT IF I HAVE SURGERY AND I CONTRACT A STAFF INFECTION FROM THE HOSPITAL, THAT I WILL NOT HAVE ANOTHER OCCURRENCE OF SJS? NOBODY CAN PROMISE ME WNYTHING, BUT MY NEW KNEE SURGEON TOLD ME THAT HE WOULD DO A TEST, BEFORE DOING ANY SURGERY TO SEE IF THE STAFF INFECTION IS IN THE BONE, MY BLOOD OR SOME OTHER PART OF MY BODY. I HAVE SUFFERED FROM 2 STAFF INFECTIONS SINCE 9/29/03, RESULTING IN A HORRIBLE RASH ON MY FACE, CHIN AND NECK AND A LOSS OF SOME SKIN FROM THE INFECTION. MORE SCARS, FEAR AND LIFELONG PAIN. I WOULD RATHER DIE THAN TO LIVE LIKE THIS FOR ANOTHER 20 YEARS.
IS THERE ANY CURE TO STOP REOCCURRENCE FOR SJS? PLEASE LET ME KNOW IF THERE IS, BECAUSE THE DOCTORS HERE IN TUCSON DON'T SEEM TO KNOW MUCH ABOUT IT. THANKS FOR ANY HELP YOU CAN GIVE ME, JOYCE J.,

Name :: Noel Morales       

Story ::    This is actually about my sister-in-law who I just visited earlier today. Sep 9th, 2004. She was prescribed Tegretol as treatment for her bi-polar affective disorder and despite telling her care-givers that she was itching after taking it for a day; they continued adminsitering the drug for a week, before rushing her to the hospital.
Its been a week now and we were pretty shocked to see her. a person who had very nice skin and was alsways carefull about how she looked, was now full of blisters and scars. her lips were black from drying blood and scabs. The doctor who prescribed the drug has NOT visited her nor has accepted any responsibility for their early inaction to her complaints on being required to take Tegretol, a drug she had not taken nor had been prescribed before. Her current doctors are doing their best, but since she is in a City hospital, their facilities are very limited and are recommending to move her to a hospital with a burn trauma unit.
Am not sure how often this syndrome has been reported in Manila, and not sure what the next steps to take. But am really very thankful that your site was available when I checked about SJS upon reaching home. Eve has 2 daughters (16 and 13) who want to visit her, but we are resisting since we dont know how to cope with their reactions when they see her. Suggestions are very welcome at the above email address.
Thank you and we ask that you pray for her recovery.