Name :: Ronald O Barzey      

Story ::    I developed SJS when I was about 14 years old due an alergic reaction to a drug called Phenalbutozone (sp. Within about a week I had a rash over my entire body and my eyes were cloudy and blurry.
I was flown to a nearby island of Antigua for treatment as the doctors in my country (Montserrat) was not aware of what I was suffering from. Fortunately the doctor in Antigua who saw me recognized my symptoms because he too suffered from it as a child.
I lost all my finger nails and toe nails through SJS and although they have grown back since, they never take the same shape as before. I have also had to wear glasses since then.
I am now 42 years old and happy to say I am a survivor of SJS but will have to remember the name Phenalbutozone for the rest of my life so as to avoid going through such an ordeal again.
I have found your site very interesting and informative as I have read stories from different people. Keep up the wonderful work you are doing!

Name :: Prudance Wason      

Story ::    This happened last year January (2003), i went to the doctor because my tonsils was in flamed, i got a prescription of antibiotics and was told by the doctor to take them for five days, by the end of the five days i was worst i couldn't swallow and i had leigons growing in the back of my throat and my eyes and face were swollen. i returned to the doctor for another check-up only this time she gave me another set of medication which was differnt from before. By the third day i was so weak i could hardly move, my mother then took me to antoher doctor for another opinion and she said I had tonsilitis plus an allegic reaction she gave me medication for the allegic reaction and for the tonsilitis, by the second day my skin was full of blisters which were very itchy. i could not walk , i had serious joint pains( i was to extreme of weakness) andi could not swallow, my mouth was full of blisters, i could barely get it open, my eyes was blood shot and swollen and also my face and i was very cold(with a fever) and always tribling . i was then rushed to the hospital after my mother got scared and took me to a private clinic, the doctor there examined me and said he thinks it is steven johnson syndrome,however they sent me to the general hospital there i was admitted and test were ran , until they came up with my diagnois , that i had steven johnson syndrome. I spent three weeks in the hospital , the doctors said if i had stayed alittle longer i would have probably died beacuse the soares growing in my mouth would have blocked my passgae way had i would suffocated or die from dehydration. After i was better i had to go to a dermathologist because the marks from the soares on my skin would not go way, also i had to go therapy beacuse my bones i my feet was damaged and they had me walking funny also i couldn't stay up for too long my joint would start to pain me really bad also i had to got to haematology clici be cause i beacme anaemic, after i was sick and wasn't eating or drinking my blood count dropped really low and it never was the same after that i still go clinic, and becasue fo that i get really tired really fast, i also get joint pains in my ankle and feet.

Name :: Victor Campbell      

Story ::    I am a 42 year old male who over the course of the last 35 years have had re-current outbreaks of Stevens Johnson. As a child I was misdiagnosed and it almost cost me my life.
Then as a teenager I suffered through much pain because of no proper treatment. Later as an adult in the United States Army the SJS returned and over a 4 year period I experienced over nine outbreaks and was medically discharged. I believe some of the existing medical problems that I now suffer from are a direct result of the SJS and the various medications that have been prescribeed over the years.Am currently trying to file for Social Security or Veterans Compensation. Would appreciate any advice from any one has been down the same road. Sincerely, Victor Campbell

Name :: Lulie Woodson      

Story ::    I really don't know too much bout my story with SJS, I was 15 months when diagnosed. I hav eactually had another episode of some milder form of reaction when I was 12 years old when suffering from Mononucleosis. My skin turned red, itchy, and the hives got very large, then turned black and blue all over and i looked like a big bruise. I was already very sick at the time. I want to know if I still need to be cautious with medications now that i am 29, or do people outgrow SJS as my doctors told ,y parents when I was little. Still, doctors do not know much at the military hospital that I go to. I know that I was in the ICU because of repetative dosing with a sulfa drug for reccuring ear infections as a baby. I get very scared when I get hives from medication, and any one can cause a reaction, even one that never has before. should I be scared still, or can I relax now that I am older?

Name :: katie      

Story ::    I'm 26 years old and was born with epilepsy. When I was baby, I had seizures continueously. The doctors didn't know what was wrong with me, but they put me on medication as a baby. I had epilepsy for 20 years and had over 20 seizures a month. They were psychomotor and grand mal seizures. When I was 11 years old, I had a 2 hour long grand mal seizure. I was in the hospital for a week.
By the time I was 18 years old, I was 4800 mg of medication and took 15 pills a day. I weight 190lbs. In 1996, I made it from February until September with no seizures. The doctor took me off a pill and I started having them all over again. Not even thinking, he didn't put back on that medication, he put me on another pill called Lamictal.
In February of 1997, I woke up one morning dripping wet with sweat. My dad took me to the doctor and he said I was hotter on my left side then on my right. My tempurature was 107 on my left and 104 on my right. He couldn't figure it out. He just told me to rest and drink alot of fluids. When we were walking out of the doctors office, I blacked out. My parents told me I was in a coma for a week. I was screaming because I was in pain. They rushed me to the emergency room and told them I wasn't breathing right and was burning up. The doctor still wasn't sure what was wrong. The next day the doctor said he wasn't sure I would make it because my throat was closing up.
He diagnosed me with the Steven Johnson Syndrome. It took 12 shots to save me. I finally woke up and saw my mom and sister on either side of me. I knew who they were. I stayed at the clinic for 3 weeks. Within those three weeks, I lost a layer of skin, alot of tissue, a little hair, all my nails, 78 lbs, and my memory. I went from 190 lbs to 112 lbs. I was in alot of pain. After being in the hospital for 3 weeks, I was finally able to come home. I wasn't sure about things at first, but I did know my family (mom, dad, and sister). I did have to be reintroduced to my whole family because of the amnesia. I was still in alot of pain and had some moments where I had a reaction from losing so much weight. Within 1 1/2 years I regained my memory and put on 13 pounds. I finally knew my whole family again.
By the time I regained my memory, I went in for brain surgery to cure my epilepsy. On September 22, 1998, I had it done. I have been seizure free for 6 years, no longer have short term memory, but and completely off medication and am enjoying living a normal life.

Name :: Liz L.      

Story ::    I was at work one night. I wasn't really feeling well, but I thought I might be coming down with a cold. By the end of my shift, I was covered with an odd rash, that I was told was chicken pox. I was even given medicine to shorten the life of the chicken pox. It did no good. My mouth started getting blisters, and then I was told that I had a very bad case of chicken pox. The blisters got worse, and pretty soon I had blisters on my hands, feet, and private area. I soon could not take care of myself at all, because of the pain. This was so hard for me, as I am a nurse, and had a lot of trouble being a patient. It just kept getting worse, and then it was actually a pediatrician that figured it out that it was not chicken pox. By then, I was a total mess. Totally unable to sleep, eat, take care of my self in any way. My toenails and fingernails became very painful, and they eventually fell off. My eyes were bright red, and I lost a lot of my vision from corneal scarring. The pain was so terrible, that I really had no desire to live any longer. This happened 3 years ago, and I still get tears in my eyes to remember what I went through. I still have a few physical problems that I can live with, but the emotional scars were very difficult to cope with. I did learn a lot with this whole experience: Don't take good health for granted, don't take medications without being sure that they are really necessary (my SJS was caused by a drug that I am convinced that I never even needed), and most of all, as a nurse, be able to recognize the early symptoms of SJS before it becomes a living nightmare.

Name :: harry einbund      

Story ::    had two failed back sugeries in 2/14 and 2/15/2002. Was switched from Morphine the Demerol for the excruciating pain of spinal chord injury.
The demerol caused brain seizures. The good Dr.'s in Northridge had to use anti seizure meds such as dilantin and depakote. The antiseizure medications caused me to have SJS.
Please note that this would not have occured if the Orthopedist Back Specialist, at Little Company of Mary Hospital, in Torrance, CA had not "overdosed me" on Demerol.
Almost died at least 2 times. 1 time due to the grand maul seizures and the 2nd time due to the 2nd degree burns all over my body due to the SJS.

Name :: Lee French      

Story ::    Hi, After reading about some peoples ordeals on this website it brings home just how bad this disease really is, yet is relatively unknown. I contracted SJS as a 6 year old in mid December, like most cases a type of penicillin caused an allergic reaction from which the SJS came about. Although I can't remember everything as I was so young I can remember how awful it was, my face was majorly effected by burns, blisters & rashes & my lips were jet black and as hard as rock and I was in unbelieveable pain. At first the doctors had no idea what was wrong with me, and diagnosed everything under the sun, all until my GP researched the symptoms & discovered it was Stevens Johnson Syndrome. I was rushed to hospital on christmas eve and that was where I spent my christmas holiday. I was given all sorts of treatment & the rashes & blisters started to fade away gradually.

When I was allowed home I still had to bathe in purple liquid & also sit with my lips in a bowl of the same stuff. Everything seemed to clear up fine, I have no major implications to this day except from my sinus' problems, slightly patchy skin & the fact my lips tend to harden a lot which is due to the blistering. I realise how lucky I was and thank God the doctors caught it in time. I was placed in the Medical Journal in England as my case was so rare in such a young child. I am also in the medical reference book "Physical signs in dermatology" by C.M. Lawrence who was my Dermatologist at the hospital. I have pictures that were used in the Journals and Text Books and would willingly share them with anyone interested in knowing about the disease or to see if the same areas affected them. Thank you for letting me share my story. Lee French, Newcastle, England

Name :: aL      

Story ::    well...my story is pretty simple... i wasnt feelin good from late April to early May.. i wasnt on any medication of any sort.. i felt sharp pains all over my body from head to toe durin that period... i got a huge headache late may and i went to the hospital and they told me that u have a virus.... and to take tyenole and moltrine.. well i went home and then slowly i begin to break out n red bumps... then i was rush to the hospital... i was uncontious for 3 weeks.. and when i woke up i saw that my skin was lost all over my chest, back, stomach, and face... it scared me the first time when i looked n the mirror... i was n the hospital wit SjS for 1 month.. and i had to learn how to walk, eat, go to the bathroom all over again... i had the worse case of SJS that the doctors had seen n that hospital.. well its been hard now.. but i have gotten a lot better. i have amost of my vision back and my skin is now coming back to its original color. its been hard to function at school and everyone is botherin me... but overall i am happy to be alive because SJS almost took me out... and for all those that survived it be happy u did cuz u could be dead... god bless

Name :: Stephanie McFarland      

Story ::    I am now 25 years old. I have been dealing with erythema multiforme/Steven-Johnson's Syndrome since I was 19. One morning, in 1998, I awoke as usual to get ready for work. When I went into the bathroom and gazed at myself in the mirror, I noticed that my lips had swollen to three or four times thier normal size, and had turned bright red. I looked as though I had had way too many collagen injections in both of my lips. Then, I had this unreal burning sensation in my gential area. It actually felt as though I were leaking some sort of acid. I also had flat blisters on some of my fingers. Then, raised blisters appeared on my tongue and in my nose. The blisters on my fingers were very painful, but the ones in my mouth and in my nose were not--until they popped. Then, the whole inside of my mouth and my nose became big open lesions. My labia also began to swell. They swole to the point where it appeared more like I had testicles than labia and the burning gave way to itchy lesions. Needless to say, I was scared out of my mind! I took a trip to the emergency room immediately. But, I found no help and no relief there. All of the doctors were perplexed and none of them had an answer for what was wrong with me. I had several more out breaks over the course of the next year. Everytime it happened, I went to the hospital hoping to find some help. And, everytime, I was sent away without any answers. One time, one of the doctors was so confused that she sent me home with a broad spectrum antibiotic, an anti-fungal, AND an anti-viral medication. I guess she thought that she covered all of her bases. Then, in 1999, on Christmas Day, I was having another outbreak. I was visiting friends in another county and wound up having to go to the hospital near their house. Once there, I saw an elderly doctor who finally had some answers. He diagnosed me with Erythema Multiforme-a generally mild case of Steven-Johnson's Syndrome. To me, my symptoms did not seem in the least mild, but now that I at least had a name, I figured that I could do some research on my own. HA!! There was so little information to be had that I was almost as ill informed then as I was to begin with. I did find some extremely disturbing stories and photographs of people with terrible cases of Steven-Johnson's Syndrome and TEN. (This made me realize that the symptoms that I have, although terrible to me, were really not that bad in comparison to what some others are experiencing.) Eventually, over the past few years, more information has come available, but it seems as though there is still no relief for the symptoms. I am currently experiencing an outbreak now, and I still have no way of treating myself, other than what I have already been doing for the past 6 years. And to this day, I do not have an explaination as to why this happens to me. I have been told that it is an allergic reaction, but no one knows to what. I will say this, though. It was a relief to finally know what the heck was going on with me, and to finally know that I wasn't alone. It was terrifying to keep going to the doctors-the people who are SUPPOSED to know what is wrong-only to be turned away without any answers. Thank you for taking the time to read my story, and please take the time to read the others as well. There are many people out there who need to share what is happening to them, and there are just as many people who need to know that they aren't alone.

Name :: Tammy Cooper      

Story ::    Today is the 10th of October,04. and we are home from Texas Childrens hospital. 2 weeks ago I took my son who is 6 years old to his pediatric doctors office were he saw one of the doctors, after spending an hour there, the doctor sent us home saying he doesnt know what is wrong with my son, maybe it was an allergic reaction to something but he did not know what, he sent us home with cortazone cream and some diphenhydramine. a day later we are back in the office seeing another doctor because my son could not breath and had trouble swallowing he said that his mouth hurt really bad could not eat or drink, and has a rash all over his body like if a million bee's had got a hold of him at one time. the doctor that saw him gave him 2 breathing treatments back to back and she said I have no idea what it is she wanted us to go to texas childrens hospital asap. off we went were we spent 7 hours seeing 5 doctors and everyone saying "I dont know" finaly the last doctor said it has to be an allergic reaction to something we had told them what my son had been taken back at the end of Aug. my son was dig. with having ADHD and Bipolor and was put on CARBATRAL 2x aday and we told every doctor that. the hospital sent us home with more meds of the same kind as the last doctors gave him. that night my son was throwing up could not swallow, I was very scared and worried, by the middle of the night my son did not look like my son he was so swollen could hardly breath we gave him breathing treatments every 4 hours and took him back to the doctors office the next day were we saw 2 more doctors after they looked at my son they decided that he had a reaction to his meds. they "think" and mono. and sent us home with some more of the same meds. that night we rushed my son to the nearest hospital were they rushed him in the back and tried to put an IV in him but after 9 tries they had no luck that is were the ER doctor walked in and said this boy has STEVEN JOHNSON SYNDROME and called an ambulance and rushed him back to texas childrens hospital were we where just a few days before but the doctor sent him and said to treat my son with having Steven Johnson syndrome after a few more time at the childrens hospital they finally got an IV in my son he was so dehydrated that he would not make it if he was not brought in. they treated my son as a burn victom and stayed in the hospital for 4 days while my son was there they kept trying to get blood from him with no luck we counted in 3 days 30 times they tried, what was really said was when his IV stoped working and they had to find another vein. when they finally got it they pulled 24 cc's of blood out of my son. when the IV stoped working again, I begged them not to put another one in he was drinking not yet eating but thank god he was drinking very little but something was going in. with my son's fever up to over 103.9 and his skin pilling they were giving him high doeses of prednisolone , levall, albuterol , tylenol. they finally let us go home but my son can not go back to school for another week or so and the doctor wants to see him everyother day they gave me a list of meds. my son can no longer have they said if he takes these he might die!!! all my son has been doing is sleeping when he is not sleeping he is so out of control the words the doctors used was " he will be coco for a few weeks" coming off the Carbatrol and geting put on the prednisolone. I feel so sorry for him . we put our life and our childrens lifes in these doctors hands and the doctors trust the med companys how can they get away with this? sorry for writing so long but these last few weeks seem like a life time to me. thanks for taking time and reading my story. Tammy Cooper

Name :: Christine      

Story ::    Thank you ,JEAN, for being so loving to give your time to this website....
Over a year ago, I had been taking different types of creams and medications to treat a bothersome darkened area on my face. During the 9 months of medications, I repeatedly broke out with rashes on my neck and back, lost all my energy ( and soon before the SJS type of attack, stayed mostly in bed), and my skin became the darkest leathery browm. I could not be near the sun. I felt like I had the flu and could not shake it. One morning, when I had my last Sulfa antibiotic pill to take, I laid the pill down on the counter, opened the jar of Benzaclin ( often used for acne) , and put a pin size amount near my lip and on the side of my face near my eye. Within seconds, my entire eye area ( about the size of your fist for each eye) became purple and black, my eyes swelled and had conjunctivitis, my lips dried up and cracked open on the sides, and my face turned charred black ( just like the gentleman's photo of his face on this website). I ran to the sink and doused my face with ice cold water, making my entire face slough off . It was like a hotdog that had been on the grill too long and the black burnt part separates from the hotdog. It was intensely hot and burning. I remember shaking and continuiosly putting my face into the water until all of the outer skin came off. At this point , my face was "new" and bright red. I knew it must have been a chemical burn from the medicine. I was too scared to call the EMS because I thought it would be too incredible of a story for them to believe they believe AND I was afraid they would treat me with more "chemicals" that would burn me more. So I repeatedly kept my face in the icewater and then after a few hours, I popped open a handful of vitamin E gel caps and lathered it all over my face. It immediately soaked in so I kept doing it until my face was comepletely covered. I also had aloe juice at home ( which was meant for me to drink) which I put on my face also. My eyes had conjunctivitis, which I recieved medication for a few days later. I think that my face has no scarring from the burn because of the immediate ice water and the vitamin E application to my face.
Since then I have been becoming more sensitive to all antibiotics, which I must take as a pre-med for my heart condition (VSD). Last month I had taken penicillin as a pre-med and also Advil . That week I broke out in the same rash I had when I started taking the medicines for my face earlier. I am fearful of taking either anymore since I don't know what it will do to me. If anyone would know of a natural antibiotic I could use as a pre-med , it would take away many of my fears.
Last Monday I had another attack. This time I was driving within a mile of a farm area inwhich animal wastes from a lagoon were being sprayed as fertilizer over the fields. I didn't even see the fields being sprayed and my face was already feeling as af it were on fire. It went immediately to my eyes, nose, throat, and skin. I closed all the windows and drove quickly to a place where I could douse my face in water. My chest felt very tight. It has been a week and my face still feels like it is burning, although you can not see it on the outside. My eyes are still swollen, and I finally can think straight again. I also had intense stomach cramps and diarrea. I discovered that the sludge of animal waste produced HYDROGEN SULFIDE gas into the air which in turn was like an acid on my skin.
Does anyone know of any natural things I can put on my skin that will aid in getting rid of this acidic burning. I still cannot go out into the sun because it begins to sting all over again. I also have a very tightening feeling in my joints now whenever I drink wine, so I have chosen to go totally organic in eating and drinking. I also have taken yeast and vinegar out of my diet, and almost totally avoid sugar. I make sure I get great sleep and have totally simplified my life. In doing so, I feel on top of this world ! But everytime I get to feeling great again, I have another strange bout with the sulfur.
If anyone can help me know which situations to avoid inwhich any form of sulfur is in the air, or if anyone has had this problem with reacting in these ways, could you please contact me. Everyday, I wonder if I will live forever since I take such wonderful care of myself, or will the sulfur get me tomorrow?? Thank you for all your kindness.
I had lost my sight temporarily from an accident once before as a little girl. I do not take the beautiful gift of sight for granted. So each day I take photos of wonderful things I get to see in my life. If you know of any TEN or SJS patients who are not able to get around and would enjoy my photos I can send them through the internet or snailmail. That would be as great a gift of joy to me as it would be for them. Love, Christine

Name :: Lawrence Hicks      

Story ::    I am 77 years old. About three years ago my doctor at the time prescribed Celebrex for my osteoarthritis condition. I took one Celebrex before retiring one evening about 10 PM, about 4 AM, I awoke with difficulty breathing. When I awakened my wife, I had difficulty speaking and we then found my tongue was severely swollen. I had to hold my fingers on my tongue to permit breathing. My wife, an advanced nurse practitioner, gave me benadryl and we left for the nearest hospital emergency room. The ER doctor gave me an injection of benadryl and I recovered sufficiently to return home about two hours later, none the worse for the experience. Without the prompt care and assistance of a trained professional I suspect I would have been another fatality of the FDA/drug industry conspiracy. Some weeks later, I had a telephone call from a nice lady employed by the drug company who wanted the details of my experience. As I recall, there was no PDR reference at the time of a potential risk such as I experienced. After this experience, a new doctor put me on Vioxx, several months later I suffered a stroke, albeit a rather mild one. This occured in January, 2002. I then suffered through the well known "Statin" cholesterol lowering treatment, in which I was exposed to the deleterious "benefits" of the statin drugs, too numerous to mention their names. I suffered swellings, gastronomic problems, headaches, palpitations, hypertension, aching joints, and general feeling of terminal despair. Every month made me a new guinea-pig for both blood pressure and cholesterol lowering drugs, all FDA approved prescriptions by an AMA, state-approved physician MD. Finally, I was rescued from this fate worse that death by a compounding pharmacist who put me on a rapid road to normalcy through amino acid, oat bran, Co Q10, and vitamin supplements. This regime lowered my cholestrol, my blood pressure, my aches and pains, and my general health to acceptable and healthy levels at a fraction of the FDA approved drug costs. I no longer suffer from the arrogance of an MD who declared that this supplement regime could not possibly help me! MD's and the FDA are not the solution, THEY are the problem!!

Name :: Richard M. Little      

Story ::    My experience with SJS occured 1967; my age was 33 yrs. I had contracted a severe Strep throat infection and was running a high fever when my wife called our family doctor on a Saturday morning. The Doc. came to our house that afternoon and assessing my condition gave me a large shot of Penicillan and a number of large pills of same, to be administered over the weekend. By Sunday AM my fever had reduced some but as the day wore on my throat felt like it was on fire. That evening I asked my wife for a slug of Lavoris mouth wash to get rid of the bad taste I was experiencing. I took a mouthful and immediately my mouth, throat and nasal passages felt like they had been bathed in sulfuric acid! The pain was unbelieveable and unbearable and continued throughout that night. Monday AM, with a neighbor's help I was rushed to the Doc's office. The Doc. observed my condition and appeared nervous and agitated as he immediately administered a massive dose of Cortisone in a shot to my shoulder. He told my wife that I had contracted SJS and sent me home with further steroid medication for follow-up. With my dear wife's constant ministering and prayers, the pain gradually subsided over the next few days. As the week wore on, the mucus membrane of my mouth, throat and genitals sluffed off as in a 2nd degree burn. All of the skin of the palm side of both hands and the bottoms of both feet came off in sheets. For two weeks following, my tactile sensations were as sensitive as a newborn; very interesting to experience. After losing 3 or 4 weeks, I returned to work healed and feeling fit again. I have never had another SJS reaction. Since then I have any Penicillan or derivitive medication. My health at 70 yrs. remains vigerous and good. Several years after my event we learned that SJS was usually fatal. No wonder our good Doc. was nervous!
Richard M. Little

Name :: Neil Richards      

Story ::    I'm 23 now, and had SJS when I was just ten years old.
I never knew why it started, and I can't remember anything about the pain and suffering.
I've been told I was in hospital for a very long time, about three months. My parents were told that I would probably die as my condition was so severe I could not be fed. I fell unconscious a few days after I was diagnosed. Three weeks later I could see out of my puffy little eyes, my skin was coming off in layers every day and I weighed almost nothing. The medicine was horrible and steroids were used to get me back to full health. I remember having my own room in the hospital and my family looking at me as if they were going to cry all the time.
Until now nothing has gone wrong with me, I have developed atopic exema, again I don't know why but that’s life!

Name :: christine hodges      

Story ::    Hi I found your site while searching for info about sjs on the web. I was told I had sjs today secondary to tegredol. Within a matter of 2 days I had my face so swolen I could barely open my eys or mouth and a rash from the top of my head to the soles of my feet. I went to my Doctor today to show him this and he sent me to the er right then and said he believed I have sjs Iwas treated with benydril and corticosteroids at the er and sent home on the prescriptions. I feel a little more comfortable since i had the shots but I guess only time can tell. I was fussing about being this way but when I say the photos on the site I realized that I am lucky that it didnt get worse. Thank you for creating this site and I pray that you Julie is doing better. Christine Hodges Sulphur La

Name :: linda haney      Email address :: lindahney101@msn.com

Story ::    my story is about my mom her name is eugenia clark she is in the hospital in mobile alabama , she is fighting very hard to beat this she has a very severe case of sjs, and is also suffering from arthritis and diabtes , she was not diagonesed properly to begin with she had been taking a new arthtis drug called areva, she was hospitialzed about a month ago with heart and kidney problems atwhich time she was also told she had a formof pnemoniuea. 4 weeks later she was back in the hospital with an alergic reaction ,still not being diagoniesd she wasnt treated with fluids r nutrion she had severe burns all over her bodyand contuined to get worse, after a few days in the hospital she was sent to icu where she then was finaly diagonesed with sjs and is currently being treateda s a burn victim, mom is on a ventalatoir assited breathing and is fighting so despertlay as well as other victims of these drugs ,she is on tube feeding and has no ability to make bonebarrow , we are all praying for her and are hopefull she will recover please remember her in your prayers . my father sits with her day and night they will be married 48 yrs on the 15 of october . if anyone has more info that can help us please let us know . her family can be reached at 251-435-2400 please send your prayers .she has to be kept in a unit where we all must be goned and gloved and masked to prevent infection. please remmember her and my dad. thanks, linda haney her daughter

Updates:
hello this an update on how we are doing since my mother passed on october 14.her story is on the site her name was eugenia clark. there isnt a day that goes by that all 6 kids dont think of our mother we all miss her ver y much we contuine to as ourselves why did she have to day she was such a fighter,how could a manufacter make such a drug that they know causes such horrible reactions.? and yet to have doctors and hospitals try to say this so rare.when we see more cases every day .we thank you for your website and have learned so much from it. my dad is still trying to deal wuth the loss of his soul matte of 48 yrs to the day of her death and although i live out of state,i have 5 sisters 4 of whom live close by her and my dad. Please contunie your prayers for my family as the hol;idays were hard and every day that goes by is hard.but i belive our mother is an angel know but it is still hard to remember all the pain she went through just trying to fight this horrible syndrome.to all the familes who are still strugling out there we pray fro you.and contuine to write senotrs and fda concerning these medications,lets contiune to get the word out there.

Name :: Hennie Engelbrecht

Story ::     My name is Hennie Engelbrecht. My son Armand (7 years old in grade 1) was, although highly intelligent, struggling to concentrate at school. We were referred to a Doctor van der Merwe who recommended the use of Degranol and assured us that it is very safe especially for the treatment of children. Armand started using it on 31 March 2004. On 14 April 2004 his eyes started swelling and he had a few red spots on his cheeks and a high fever. We took him to the Emergency room being a public holiday where he was diagnosed to have Scarlet fever. He was given an Anti biotic and some pain/fever medication. As we were not sure what was wrong we did not give him the Degranol, afraid also that it could react with the Anti biotic. The evening he had red spots all over his body and his eyes were very red and swollen, all consistent with what the Doctor said the symptoms of scarlet fever would be. He also had a high fever and his mouth and throat was covered with sores preventing him from swallowing anything.

On the morning of 15 April 2004 we took him to our own Doctor being worried as he had not eaten or drink anything for 18 hours. He was then diagnosed to have Measles and admitted to hospital and put on an IV. Later the afternoon he developed tiny blisters in his face and on his body and ran a high fever. The Doctor was called and told us that he had Small pox as well as Measles resulting in the high fever. A Paediatrician was arranged to see him the next morning. Later the evening some of the blisters grew up to 4 centimetres in size and spontaneously burst open.

Early on the morning of the 16th the Doctor came to check on him. He informed us that he did some research during the night and is convinced that Armand does not have Smallpox or Measles but SJS. He told us that he would now hand it over to the Paediatrician. About an hour later another Doctor I also know walked past the room. I called him and asked him to give his opinion. He had one look at a distance of about 2 meters and diagnosed it as being SJS. He had seen two previous cases and was convinced. Armand was transferred to another hospital and was seen on arrival by the Paediatrician. She immediately diagnosed SJS and started treatment with a high dosage of cortisone and Flamazine cream for the wounds. She informed us about the seriousness of SJS and told us that the next three days will be critical. At about 17:00 she phoned me and requested permission to start treatment with Polygam. At this stage Armand was just lying with his eyes swollen shut and his body and face covered with burn-like wounds and running a high fever. An Ophthalmologist was contacted and he saw Armand and prescribed eye drops that had to be administered every 3 hours.

The Polygam was administered the evening of 16 April an again on the morning of 17 April as well as the evening. At about 21:00 on 17 April Armand opened his eyes for the first time in two days. He sat up in bed and talked to us. He told us that he had no pain at all and was feeling well despite al the wounds. He was just thirsty and hungry but could still not swallow anything. By this time his mouth and throat was covered with blisters inside. His condition deteriorated slightly on 18 April but from 19 April up to date he has never looked back. On 20 April he could manage to take in 1.5 litres of fluids and this was sufficient to convince the Paediatrician to discharge him from hospital on 21 April 2004.

It took about two weeks for the most wounds to heal. After three follow-up visits to the Ophthalmologist he was given a 100% thumbs up for his vision. He returned to school on 4 May 2004 and all he can show at this stage is small, not obvious scars in his face and on his back, and still some shedding of the skin under his feet.

When I look at the pictures and stories on your website I am amazed that although he looked similar to some of the pictures his recovery period was much shorter than any other. He was only in hospital for 6 days and stayed at home to recover for 12 days. Less than three weeks. All the Doctors agree that it should have been very painful but up to this day he insists that he had no pain at all although he was not given any strong painkillers. The only pain he experienced was trying to swallow and when they moved the IV 4 times. He never cried, not even when the staff and my wife bathed him in saltwater, cleaned his wounds or applied new cream.

Compared to the other cases I have read about Armand’s is nothing short of a miracle. It was also described as such by the Paediatrician, Doctors, nurses, Ophthalmologist and two Physicians who saw him and the pictures.

He now wears a Medic Alert bracelet and will use no medicine unless it is critical as we are determined to prevent him from getting SJS again. [ click here ] to see the pic's of 7 years old in grade 1, with SJS.

Name :: Carolyn      

Story ::    My name is Carolyn at a young age I found out the hard way what sjs is all about. I was in sec. grade and reseved a med. for a bladder infection. It was white and thick. Less then one day latter I broke out in "chicken pocks". At lest thats what the sub. Dr. said it was. My mother said I had already had them, though he would not belief her. She took me home the very next day she returned to my normal Dr. Who imedatly know just by the look of me what it was. He then gave my mother a 3 hour "life time". Luckly anough for me they new how to take care of it though I was the first in that hospital to ever have it. Back then it was only know as sjs now they have diffrent types of it.
I know know that I have SJS "TEN". But do to that sub. Dr. I have bad vision, troble breathing sometimes, and a slightly weak heart. But I am also 19, getting married, and having my first child.
I just wanted to let people know that even though you change, nothing else has to. Just know what you can and can not do. Hey i was the star starter for the volleyball team!
If I can do it you can too.
I have pics of it if you would like to see them just let me know the more people find out the less people will die, from this silent killer!

Name :: BRENDA RABER      

Story ::    I HAVE BEEN HOSPITALIZED TWICE WITH SJS AND THE FIRST TIME THE DOCTOR DID NOT KNOW IT WAS THE MEDICINE CAUSING IT SO HE TREATED ME WITH MORE ANTIBIOCTICS. I HAD A 103 FEVER LOST ALOT OF WEIGHT AND FELT LIKE I WANTED TO DIE. I HAD BLISTERS EVERYWHERE ON MY BODY AND AT FIRST THE NURSES WERE EVEN AFRAID OF ME.THANK GOD THE SECOND TIME THE DOCTOR KNEW WHAT TO DO. MY BEST ADVICE IS TO STAY AWAY FROM ILL PEOPLE AND DONT GO TO THE HOSPITALS OR NURSING HOMES UNLESS YOU HAVE TO. I AM NOW AT THE POINT WHERE I CANT HAVE ANYTHING UNLESS IT IS LIFE OR DEATH.I ONLY PRAY I NEVER GO THROUGH THAT AGAIN.GOD BLESS YOU ALL.

Name :: Jane E. Rutberg      

Story ::    I began taking the drug Placquenil for serum-negative rheumatoid arthritis and was told that it would take approximately 4 weeks to begin to make an effect-it did-I began having gritty eyes with swelling but tried to disregard this and then suddenly looked in the mirror and saw that my face was far more than its usual flush-looked at my neck down to the tops of my thighs and saw a measles-like rash that was bright red...I knew what it was as I am an RN and have taken care of children with this as well as an adult after just 1 Elavil. I took some Atarax and went to pick up a Medrol dose pack which I had had at my Pharmacy. This then progressed to my skin felling like sandpaper and not pleasant to deal with, my skin all sloughed off, and while I had been treating a tendonitis of the right hip, suddenly knew that my right leg had become much shorter while standing in the shower. I then used assistive devices and used crutches and a wheelchair at work while dealing with pain. In June I had had moderate osteoarthritis of that hip and after SJS had many tests done indicating that I no longer had a hip-in Oct 2003, I had a total hip replacement which could not be minimally invasive as the acetabulum was very hard to find and the femur had only a nub there. I am now pain-free since that event in Nov 2003. The Dr who prescribed the offending med never had the courtesy to talk with me about this-my primary had to take care of it-dangerous if I had not known what to do about it.

Name :: Steve      

Story ::    3 years ago I went to see an Orthopaedic Surgeon about arthritic knees , My Dr, Gave me samples of Bextra, I took them and within 48 hrs my joints were in pain, I wasnt sure if I had something else going on, So i continued taking them, after 2 weeks I returned to The Dr. and told him about my joints, he told me immediately to stop taking Bextra.
At this point my muscles in my upper arms were burning horribly 24 hrs a day. little relief was offered by using heating pads and muscle relaxers, This lasted for SIX MONTHS!!
My arms were very weak, and I cannot emphasize the amount of pain and burning I lived with for 6 months.
Just wanted to tell my story to somebody!!

Name :: MS Siregar      

Story ::    I have steven johnson about 3 year ago, when my skin (lips) was bleading and so on. Docter said because medichine "Kina" kind of meddichine for "Malaria" and kind of medichine for sulfur etc.
I live in Jakarta, Indonesia. My email is "ms_siregar@bri.co.id" Exactly I don't know a lot of Steven Johnson S. Would you tell me about of This. Cause, kind of not consume and etc.
Thank a lot for you kindness (and sory my english is not good)

Name :: Bethzy      

Story ::    Hi. I´m a 45 years old/young woman from sweden with SJS or Erythema multiforme. It scares me, and the doctors hardly know what it is. If I get reeeeally sick, who could help me? What treatment?! Maybe I´m allergic to whatever medication they want to give me? I know I´m allergic to medicin you take when you are allergic?! I think it´s medication I´m allergic to. Is it anyone who could send me a list of medicin that I should avoid? As it is now don´t dare to take pills against a simple headace.....

Name :: carol Weems      

Story ::    my mother recently died of sjs. we had never even heard of such a syndrome. My family had to watch as she suffered so much. It was from a drug called arava so we think. The doctors seem to think that it was from plavix. But we know that sjs is an adverse reaction to arava. She broke out severe rash.From the top of her head to the bottom of her feet. Soon they had turned into blisters then they would just slough off her. She had trouble breathing , eating or drinking she could not do. It effected her eyesight. Her whole body inside and out had been effected. She laid in a hospital room for a whole week without fluids going in her. She was put A&D Ointment and powder on her burns. We feel as if her doctor should had warned her about this drug and the side effects it could have. It should not even be out on the market. I don't want any family to ever go through what we just went through. We have lost a part of us and it will never be the same. When she was finally put in Icu and burn units had been contacted about how to treat her burns it was to late. There was so much damage done already see she was severly dehighdrated and malnutioned when she went in Icu.There is no excuses. If my family can look on the internet in find information on sjs/Ten I know that the doctors could had also.My mother will never be forgotten and I pray that this will be some help to someone to know that they are not alone.

Name :: William Dingle      

Story ::    Went to a Dermatologist for Athletes Foot. I was given Lamisil and Cipro to fight the recurring infection/fungus. Within 48 hours after starting the treatment, I had droplet-sized/reddish rash on the majority of my body, and hundreds of blister-like bumps on the palms of my hands and feet. I immediately stopped all medications and called my doctor. In the following couple days after stopping all meds, my hands and feet (palms), became leathery, and cracking, and eventually large scales of skin would fall off. A Biopsy was taken, and after 1 week, the results were; that I had an "Episode" from taking of one or both of the medications. Through my own research, I have come to the conclusion that I might have had an episode of SJS. My primary doctor, and my Dematologist have both been unable to give me any medical terms for my condition, or they are unwilling to do so for some unknown reason. All I can say at this time, with my condition getting better each passing day, is that I wish every doctor out there would be willing to inform every patient about the risks of a possible allergic reaction, and what to do when they first see or feel the symptoms. I am thankful to no-one but myself, that I stopped the meds when I did.

Name :: Rachael      

Story ::    I'm very new to this Steven Johnson disease/syndrome.
About two weeks ago, I woke up with tiny red bumps all over. The doctors weren't sure what it was, so they said it was mono. As the days progressed, I started to have a temperature of 102+, sore throat, "gunky" eyes, and the rash was getting worse.
We went to the doctor a second time, and they said it was a viral disease.
My rash is now all over my body. It's dark red/purple, it is all formed together, and rather than still itching, it is now horribly painful. My temperature is back down, and my sore throat is going away. My eyes are still very messed up and it seems as if I'm looking underwater. My lips are very chapped, and the inside of my mouth seems as if it's peeling off.
We went to the doctor one last time tonight, and he told me that I had this. There's nothing they can do but sit back and watch.
I'm wondering if any of you had any advice for having this, or what to do for the pain. I pray that it doesn't progress any further, because this is hard enough as it is.

Name :: Gayle Dohrman      

Story ::    I began taking Bextra in early 2003 for arthritis pain caused by a multiple fracture of my left lower leg. I was injured in a fall at work in Nov 2001, but I feel that my injuries were never properly treated (my leg was never even put in a cast, just a walking boot, and I found out months later that there were two more fractures. I also injured my arms and still have pain and numbness). I have been in constant pain since it happened.
About 3-4 weeks after I started the Bextra, I developed an itchy red spot on the back of my right hand. I thought it may be ringworm, as I have animals, and treated it with fungicide, but it only got worse. I also had intense itching behind both knees. I saw my doctor for the rash and he finally took a biopsy of it after many months, when it had spread to both hands and was a bright red, intensely itchy rash that left me in misery. He diagnosed it as eczema and gave me cortisone cream. My husband had said several times that he thought it was the Bextra, and I wish I would have listened to him and stopped taking it to see if he was right. It worked well on my pain, and I did not know it could cause such a rash.
I stopped taking it after about a year. I researched it on the internet and found that many other people developed a rash from it. Pictures I found looked just like mine. After I stopped taking Bextra, the rash immediately began to subside and lose some of its redness, though it took weeks to heal. I started taking naproxen sodium instead, but was not taking very much, and that worked for me for a time, then started to have the same rash again. I did not know it was in the same family of drugs. So, about 2 months ago, Aug 2004, I stopped taking any kind of painkiller and just use horse liniment on my leg and arm and suffer the pain, which has pretty much crippled me.
My hands are scarred (I think permanently) and I have dry skin there and some lingering redness. I had developed blisters in the area that still itch and give me trouble, and the skin looks crusty and different than a regular scar. I feel SO lucky that my reaction was as mild as it was, compared to what I have read others have gone through. My heart goes out to other people who have to suffer with this! My doctor did not think the Bextra would cause the rash, and dismissed my questions. I can only imagine the agony other people are going through and the frustration when no one will listen. I have pretty much lost all faith in medical doctors and found that these days, you have to diagnose yourself, then try to find a treatment. I have found that Burdock root has helped my skin. Best of luck to all those who have to experience this, and thank you for reading my story. Gayle

Name :: Andy     

Story ::    30 years ago I had SJS as a result of taking Sulfa for an ear infection. I had symptoms similar to those described by the other stories listed here....blisters, lost fingernails, fever etc....a horrible experience. Luckily I lived near Philadelphia and had treatment from some of the best Physicians in the U.S. Today I am 41 years old and have absolutely NO residual problems and no handicaps of any kind as a result. I thank god and the skilled doctors who treated me for my recovery.

Name :: Troy R Thomas      

Story ::    I was diagnosed with SJS since 1991. I was a sophomore at the University of South Florida (USF). I have experienced all the pain, anguish, alienation and loss of independence that my cohorts felt as I read their e-mails. SJS has changed my life; however; I have tried to put a positive spin on this situation. SJS has not stopped me from obtaining my Accounting degree from the Florida State University (FSU, 1995) and my MBA from USF (1997). Currently, I am the Senior Business Analyst at a major Cancer Research Center. My success is threefold. First, I have a strong social network. My friends and fiancé have kept me positive. They have seen me struggle, but they have grown from my perseverance. Second, my family has always been in my corner. My mother’s prayers and strong believe in the Lord have guided my path. She was there at the beginning and can witness to the miracles that God has given me in my life. Finally, God’s Grace is sufficient. He has shaped and molded me into the young man I am today. Because of His Grace, I see myself in a different light. Now, the road has been tough. I have had over 50 interviews and have seen discrimination and experienced it first hand, but a door was opened to me.
I have always prayed for my sight. Now, God has answered my prayers. I am trying the scleral lens treatment with Dr. Edward Boshnick (Miami, FL). The results are more than I could imagine. With Dr. Boshnick’s hard work, my vision has improved to 20/30 with the correct power. In addition, I do not feel any irritation or discomfort with the lens. The lens protects the eyes from the elements. This treatment is truly a miracle. I do recommend this treatment for SJS patients and Dr. Boshnick is truly a patient’s Doctor and has the credential to make the lens work for you. He is truly an asset to the Southeast area.
SJS has not stopped me from living; I just have worked harder.

REMEMBER: We are not out of the race; WE just go at a SLOWER PACE!!!! God Bless all of you and stay STRONG AND POSITIVE.

Name :: Tiffany Sponaugle      

Story ::    I got SJS in the 5th grade after recieving sulfa products for strep throat.
I was air lifted to 3 different hospitals before they found a place that knew what was wrong with me.
Reliving the details is hard because it literally was the worst moment of my life.
I was hospitalized for a month and a half and never went back to school that year.

Name :: lynne drewery      

Story ::    diagnosed with sjs in 1995 and still suffering every time i am unwell it all flares up in the mucous membrane areas also erythema and joint pain i took nitrofurantoin and am at my wits end to try and fight it so far it has cost me my career and marriage i am in my forties and the future looks bleak can other sufferers advise me?

Name :: Kathy      

Story ::    I have taken Bactrim twice and never will again. I was told I had genital herpes, even though the blood tests and cultures repeatedly came up negative. It was SJS I am sure, as it only happened right after I took Bactrim and made no other change in diet or lifestyle. How frustrating that a doctor doesn't even mention or think of it.

Name :: Rheyna B      

Story ::    This story is not mine exactly. It is of my sister. About a little over a year ago my sister Bonnie suffered from this. It was really strange because my sister, now 29 years old, is the most health conscious person I know. She constantly watched her weight, she was very well versed in anything that had to do with keeping healthy. She never up until this happened, was allergic to anything. I mean this girl could eat, drink, or take any kind of medication and not suffer any kind of allergic reaction. If anything, it was me who was allergic to everything under the sun. I was the one who NEVER took as good of care of myself the way she did.
Well, one night, after falling asleep next to my mom, she somehow fell off the bed, which caused my mom to wake up for a second, and just wen my mother thought the loud thump was only in a dream and started to drift off to sleep, she heard some kind of shaking noise, she got up turned on the lights and saw bonnie having some kind of epileptic seizure. My mother immediately called 911 and in the meantime tried to hold her down, which she knows by now it wasn't exactly the most beneficial thing but as a "freaked out" mom, it was her 2nd if not her 1st impulse. Well, my sister finally gets to the hospital, my mom explains what had happened and so they immediately verbally confirm it was in fact a "seizure". They put my Bonnie on Tegretol then Dilantin...well, about a week later, she started getting these flu like symptoms, getting swollen everywhere and couldnt eat or drink. She calls me up at about 2:00am on that following Saturday after being admitted to the hospital and asks me to take her to the hospital again the following day, now for this girl to ask me to do that, I knew there was something really wrong. I cannot describe what I saw when I picked her up. She literally looked like a burnt victim. When I got her to the hospital (I took her to a different one from the 1st one) the security guards and some nurses took 1 look at her and wanted to quaranteen her. It took 3 days in the emergency room for anyone to come to me and tell me that it was SJS. I can't go on with this story to you without crying as I recall. It was absolutley the MOST gut wrenching experience of my life. To see her go through this and not be able to help her, I literally wanted to spit nails at anyone. I must have fought with every doctor, nurse, orderly, that came across my sister's case. I mean, even her hospital gown hurt her. This was probably the closest I will ever feel to having a child of my own. I kept saying that this should never have happened to her, it should have been ME. There are a couple of confusing things here that still anger me. First, the neurologist said according to the tests that they ran on her, she NEVER suffered a seizure, but it was what he called "seisure like" or "pseudo seizure"???? What is that??? Second, my sister is also in the military. When being stationed out in Iraq, she AGAIN suffered what the military doctors say is a another possible seizure. We are still awaiting test results on that. My thing is, if this was not a seizure, then WHY was she given that medication, if it wasnt a seizure, then WHAT IN GOD'S NAME IS IT. The first episode was a year ago, and here we are a year later, it happens again. At this present time, my sister has been sent back home from Iraq due to the "seizure" and is under military medical supervision. I have so much more to say but as I go on, the more frustrated and aggrevated I get. My sister is beautiful, very well accomplished and has a long long life ahead of her and I WILL NOT LET ANYTHING GET THE BEST OF HER AND CUT HER LIFE SHORT DUE to misinformation or even in some cases, ignorance about SJS and I want to find out anything or anyone who has gone through or is going through what she or I are going through right now. Please write me back and tell me anything or where I can go or something because I feel like I am about to fall off the deep end and I feel as helpless as I did a year ago. Thank you in advance for reading my story.---Rheyna

Name WANDA CHAPMAN

Story::     THIS STORY IS ABOUT A RELATIVE, MY COUSIN. IT STARTED IN NOVEMBER 1996 AND SHE REALLY DIDN'T PAY MUCH ATTENTION TO IT. AFTER THANKSGIVING SHE WAS ADMITTED TO ST JOSEPH'S MEDICAL CENTER IN AUGUSTA. TRUTHFULLY I DON'T THINK HER PHYSICIAN KNEW WHAT HE WAS DEALING WITH AT THE TIME OF HER HOSPITALIZATION.
AFTER CHRISTMAS IT BECAME APPARENT THAT THIS DOCTOR DID NOT HAVE EXPERIENCE OF DEALING WITH THIS DELICATE MATTER. UJNFORTUNATELY, SHE WAS PRESCIBED A MEDICATION THAT SHE WAS TAKING FAR LONGER THAN ACTUALLY ANTICIPATED. THIS DIDN'T HELP MATTERS AT ALL.
WHEN I SAW GWEN AGAIN IN JANUARY ALL OF HER SKIN WITH THE EXCEPTION OF HER NECK WAS COMPLETELY SLOUGHED. MY RELATIVES AND I QUESTIONED OURSELVES AND ASKED WHAT COULD THIS POSSIBLY BE? IT WAS ONLY DISCOVERED BY THE PATIENT'S SISTER RESEARCHING INFORMATION AT A LOCAL MILITARY BASE.
GWEN'S BODILY ORGANS WERE BEGINNING TO FAIL, AND SHE WAS VERY WEAK AND AT THE POINT OF GIVING UP. HER GALLBLADDER WAS REMOVED BY A PHYSICIAN FOR SOME UNKNOWN REASON. WHY COULDN'T THIS BEEN DETECTED BEFORE IT DESTROYED HER IMMUNE SYSTEM? EVENTUALLY SHE SUCCUMBED TO THE DISEASE ON JUNE 3, 1997. IS ANYONE ELSE SUBJECT TO THIS PAINFUL AND DEBILITATING DISEASE? PLEASE WRITE BACK SOON
STILL GRIEVING THE LOSS OF OUR LOVED ONE.

Name :: Melissa Saavedra

Story ::    IN DECEMBER OF 2001 I NOTICED MY BODY HAD THESE LIKE BLISTERS ALL OVER. I DIDN'T KNOW WHAT IT WAS. I USE TO WORK FOR A NURSING HOME SO I WENT TO WORK TO SEE IF THEY KNEW WHAT WAS WRONG WITH ME. NO KNEW.I DROVE MYSELF TO THE HOSPITAL. THEY CHECKED ME IN BUT EVEN THEY DIDN'T KNOW WHAT WAS WRONG. THE BLISTERS STARTED TO SPREAD ALL OVER MY BODY EVEN MORE. I STARTED TO GET REALLY SCARED. ON MY DOOR AT THE HOSPITAL THEY POSTED A SIGN FOR PEOPLE TO WEAR GOWNS,AND GLOVES BECAUSE THEY DIDN'T KNOW IF I WAS CONTAGOUS.IT TOOK ABOUT FIVE HOURS BEFORE I FINALLY GOT DIAGNOSED WITH THE STEVENS-JOHNSON SYNDROME. THE ONE WHO KNEW WHAT IT WAS IS THE GREAT DOCTOR BY THE NAME OF ONDO. HE IS MY HERO IF IT HAD NOT BEEN FOR HIM I WOULD NOT BE HERE TODAY. THE ONLY THING THAT MAKES MY STORY DIFFERENT IS THAT I GOT THE DISEASE FROM OVER THE COUNTER DRUGS LIKE MOTRIN, ALEVE, ADVIL,AND TYLENOL. MY LIVER STARTED TO SHUT DOWN, MY EYES,MOUTH,LIPS,AND TONGUE STARTED TO BLEED. THE WORST OF IT ISN'T OVER YET. I HAVE LOST ALOT OF MY MEMORY AND THE LIGHT HURTS MY EYES.

Name :: Chantelle Ryan

Story ::    I will start my story to you by thanking you all for posting your stories for people like myself, whom, for as long as i have been able to has been searching for stories, websites, people i can relate to who have experienced SJS in one way or another.

I was effected by SJS nearly 17 years ago, i was nearly 4, making the year 1987.

I will be honest and say that i cannot remember much about my illness and i have asked my mum to also post her story on this website to do so so that my experience from her point of view is also shared.

My SJS began as a coldsore and a sore throat which went into develope internally, even though SJS is caused by a drug reaction, i was not on any medication at the time of my illness progressing.

I had a high fever and was taken straight into hospital, i can remember the journey in the back of my god-mothers car to the hospital, but everything from then until my recovery is a blur.

My mum was with me 24 hours a day 7 days week throughout my illness, she recalls the times i spent howling in pain because of blistering and swelling, she also recalls that she had to nurse me due to nurses collapsing, everytime i was touched, blistered skin would fall off and many times this affected the nurses in the hospital.

SJS did put me into a coma, i do not recall how long i was in a coma but hopefully my mum can give those details in her story. I do know that while i was in a coma it was Christmas time and Diana Princess of Wales visited me, gave me a present and spent about an hour and a half with my mum and dad discussing my condition.

The next memory i have from that time is a nurse trying to feed my a pill, telling me not to chew it and i did exactly that! i chewed the pill and spat it back out!!

SJS has not left any visiable scars on my body, for that i am thankful. I do however have a severe eye condition which has gradually got worse and will eventually deteriorate and make me blind. I am photosensitive, i have dry eyes, i have problems with the muscles in both bottom eye lids causing alot of contact with the eye itself, scratching and scaring across my cornea. I am normally in pain with the friction of my eye lids and eye lashes from both top and bottom lids, even though i have had several operations to try and prevent the contact of the lids which all have unfortunately failed.

I am extreamly lucky to have a very supportive family and fantastic friends surrounding me, who never let me feel down about my eyes, and support me with everything i want to do. They never let my vision imparment stop me doing what i want to do and i can proudly say i am now studying a Computing Degree at the University of Glamorgan and have met people who are just as strong for me and are always helping me reach my goals and targets.

I want to thank you for reading my story, i apologise for not being able to tell it all to you but i will certainly rush my mother on getting the full picture posted. Take Care

Name :: Sue Rogers

Story :: About 8 years ago, I got a urinary tract infection and my PCP treated me with Bactrim. I had taken it several times before when I had contacted UTI's and had never had a problem. Within 24hr of starting the Bactrim, my fever went up instead of down, I felt like I had the flu, and broke out in red splotches all over my body. My face and eyes became very red and swollen.

I became so sick that I went to the emergency room and they admitted me to the hospital. It took them several days to realize that it was an allergic reaction to the medication. When they finally changed medications and started some IV antibiotics, the symptoms very slowly began to recede. It took several weeks before I looked normal again and several more weeks before I felt normal again.

The doctors were considering all kinds of diagnoses including lupus (SLE) but finally just told me it was "drug fever" from being allergic to the Bactrim.
I will never forget how sick I felt!!

Name :: Nikole

Story :: My name is Nikole, and this September, I was diagnosed with TENS(toxic epidermis neucrolysis syndrome). I'm a 15 year old freshman that is lucky to be alive.
We aren't sure which drug was the one that actually caused the reaction in me(either lamital, which was prescribed to me for mood stabalization, or an antibiotic that was given to me for a sinus infection, z-pak), but it started out as a very small itchy rash on my upper chest. When my psychiatrist had prescribed me Lamictal, he said, "Oh, and watch out for a rash.", so my mom called him, but of course, he was on vacation, so the receptionist told her to go to the pharmasist. We get to the pharmacy, and they say that Lamictal is known to cause SJS, and to go to the emergency room if it gets any worse, and just gave me some cortizone cream to rub on it, to help with the itching. The next day, it had started the rash had spread to from my chest to the tops of my arms, and my gums and tounge were really swollen. Everything just itched like you wouldn't believe. Well, my mom got nervous when she saw that my mouth was swollen, so we went to the ER. They took x-rays and such, but still thought it was just a rash, and sent me home at about 12 noon, telling me to come back if it spread to my eyes.
Well at around 6, I ended up going back to the ER because the rash had spread to my face, neck, and to my back, and my eyes were swollen and very painful. They still didn't think it was SJS, and gave my mom the option of keeping me overnight at the hospital. Well, since I have a history with ... well ... freaking out and having "episodes", and they had taken me off my zoloft and put me on some steroids(which are known to increase depression), my mom decided it would be best to keep me at the hospital overnight, as I was getting very very uncomfortable.
That night I started getting blisters...very small though, so they still didn't think it was a big concern. The day after that, they had my pediatrition and dermatologist come in and have a look. They both didn't think that it was anything to serious yet, although the blisters on my body were expanding and popping and I was in extreame pain. So I stayed at the hospital an extra night. The day after that, they came back in and saw me, and my dermatologist right away said, "she needs to go to loyola's burn unit". My skin was starting to come off, and I was getting blisters in my mouth. The hospital that I was at was not able to accomadate a patient with SJS or TENS.
So off I went to Loyola, with a little bit of pain medication in me. I don't remember much of the ambulance ride, but I'm told that from the time I left Edwards until I got to Loyola, a blister formed on my face and grew to about the size of 3 quarters.
I don't remember arriving at Loyola, but I do remember the first scrubbing. Now, I bet any SJS or TENS patient will tell you that the scrubbing and bandage changes are the most painful part. This is true. By the time I got there, my pain medicine had worn off and I was almost fully conscious. The doctors and nurses stripped me down, and started scrubbing off all of my skin almost the second I came in the door. Now, as I said before, my pain medication had worn off, and I was getting the full blow of this scrubbing. There is no way to describle the immense pain I felt then...the only thing I can compare it to is having steel wool dragged across skin that wasn't even there.
I must have passed out from the pain, becuase the next thing I know, I woke up and my dad was there next to me, crying. The first thing I asked was, "Daddy, am I going to die?"
I honestly thought I wasn't going to make it. It wasn't one of those when you break your leg moments and you scream, "I'm going to die!" It was almost a relaxed realization more than a panicy response. After that first bandaging, everything is pretty much a blur. I don't remember many specific occasions, except a few.
One thing that probably helped me more than anything was all the supportive e-mails I recieved daily, via my dads blackberry(Durring my stay at the hospital, i recieve more than 500 emails, which were all a godsend). Another thing that helped were all of my visitors. Daily- my mom and dad, grandma and grandpa, nanny and grandad, and then my friends, cousins, pastors, and aunts and uncles aslo came to visit me.
Everyday the opthamologists would come in and check out my eyes,(I was lucky in that department, I walked away with minimal scarring under my eyelids, so just dry eyes)and put goopy stuff in them to prevent my eyelids from scarring directly to my eyeball.
I also couldn't eat, becuase of all the blistering to my mouth and throat. I didn't eat until the day I was dischared, 3 weeks later. Now, I'm pretty much back to normal, except for all the skin discoloration which I'm told should be pretty close to normal within a year, and also, my nails(toes and fingers) are falling off. I'm back to school almost full time, and am caught up with all of my classes.
Now that I'm out, I found out that I lost more than 50% of my skin(about 65%). My dad was the first one to see me after my first scrubbing, and he has informed me that I looked like I had a cheese grater dragged across my entire body. I was one of the lucky ones that survived TENS. Now, I'm happy to be alive, and I'm going to do something with my life that has been given back to me by some of the best doctors in the world, (especially Dr. Gamaliay sp?), and the craploads of prayers and support I recieved. If anyone else is going/went through a similar situation and wants to talk about it, feel free to e-mail me

Name :: Kevin Sause

Story ::    when i was 5 years old i took a cold medicine in the fall to help stop the allergies i had but i did not know that i was allergic to that medicine. after a few days of taking this medicine i had watery eyes and found little red dots all over my body. i had taken school of that day to go to the doctor but evan he did not know what was wrong with me. of course being 5 years old i was scared that i might die and the docters were not sure what was the matter with me so that scared me evan more than i was already. i was shipped to a hospital in gainsville in an ambulence and i remember feeing like crap and my sight became blurry and then shortly after this i blacked out from the pain i had in my stomach. i woke up in the hospital room but found that i could not open my eyes for some reason. i wanted to scream but i couldent. my throat hurt to bad and i sounded way to soft to be heard any way. but throught thick and thin my parents were there for me and stayed at the hospital every night until the docters had told them i had steven johnsons syndrom. i was not able to see for at least two weeks with my eyes glued shut my mucus made by my body and what i think was the worst memory at the hospital was in those few weeks i was there i had my birthday celebration about 2 weeks before my birthday becouse they did not think for sure that i would make it. but after 3 long weeks i started to get better and got my sight back at a cost. i can see only with the help of a medicine called Bausch and Lomb. if i dont take this medicine 3 times a day i will go blind for good. while i am thankfull to be alive still i am sad to look like i am crying all the time. being alive is my blessing...being half blind is my curse.

Name :: Cati Condon

Story ::    When I was living in Dubai at the age of 17, (now I'm 37) I got SJS. I was given the Septrine antibiotic for a unrinary tract infection and I suddenly became very ill. At first the doctors thought I had leukaemia and then Aids! My whole immune system was just getting weaker and weaker. I got ulcers in my mouth and thrush in the mouth as well as in the vagina and anus. I became very weak and lost a lot of weight very quickly. My parents took me to London and I can remember on the plane that I was coughing so much that I was coughing up blood and that the inner corners of my eyes were bleeding. I came to a point at that time on the plane that it would be so nice to slip away and I would have so much peace. I can really understand people who are suffering why they want to die as they just want to end the suffering. We got to London and I was examined by the top doctors from Harley Street, an opthalmolagist, gynaecolagist and kydney specialist and a general practitioner. That morning I arrived at the hospital, I seemed to be getting better as the doctor said that if I didn't eat, I would be given a drip and as I hate drips and needles I ate the bowl of porridge they gave me. From that day I got better and was given tetraciclyn for viral pneumonia. I needed physiotherapy for the pneumonia I got. To this day I feel tired quite early in the evenings, but apart from that I haven't had any after effects.

Name :: Ylva Sorenen

Story ::     Hello! My name is Ylva Sorensen. I have struggled whit SJS sense 1959. When I was two years old i had a medication ( ledercyn), because I had a swullow neck. After that, I had the blisters in the skin and also in my eyes. My mother was not allowed to visit me because she were pregnant ant I looked so terrible, she could have lost the child in chock to seee me. In all my life a have had pain in my eyes. My eyelashes grow inwards and I try to pic them out. I have god sight on one eye, the other was damaged. I did not know that there were so many like me who have the same and worse. My love goes to you all. I wish you the best. Ylva in Sweeden.

Name :: Jessica

Story ::    Hi I am Jessica and I am 11 years old. I just got discharged from the hospital two weeks ago with a very severe case of SJS and double pneumonia ontop of that. The first three nights I was in the hospital they were not sure if I would live of die. They had to fly in people from CDC in Atlanta, GA because the doctors were not sure what was wrong with me.
After they figured out I had SJS, they put me on an IV, partly because you almost always do with SJS, and partly because it hurt my mouth too much to eat. They put me on a venalator and they were about to put me on a resperator. My blood pressure was low and my heart rate was very high. Now, through this whole thing, my mom was in Florida on vacation. My dad called my mom from the hospital panicing. She flew back on a private jet, and as soon as she got to the hospital, my blood pressure started going back upand my heart rate slowed down to normal. I would have died if she hadn't been there that night. I don't really remember the first week, but the secong week I was getting much better. The doctors still thought I might go blind, but I didn't. I never knew how bad SJS was. I thought it was just a skin disease and would go away. I never knew until after they were almost sure I wouldn't die that SJS could be fatal or that it attacked your organs.
But now I'm fine and the doctors say it won't scar, and I'm glad I survived and I am going to try to make more people aware of SJS (because not many people are) so everyone who get SJS will survive, like I did. -Jessica

Name :: Diana

Story ::    Hi, It's been along time since I've been intouch. Alot has happened. I lost my husband to sjs he past away 3years ago. I use to get on the line and was in touch with some other people who suffered and it helped at the time. I was't able to talk about my experiences with sjs for a very long time it was to painful.

My husband got sjs about 4 1/2 years ago. It was such an terrible time. We thought it was from a sulfa drug but I am pretty sure it was from a chemo treatment. He suffered so much that i think that's what is so hard to deal with. Losing my husband was the hardest thing and yet I just thank god that he is not suffering anymore. When you watch someone you love go through that find of suffering your suffering with them. He was 51 when he died and it's 3 years later and I still can't believe it happened.

I got a email about sjs awarness but I lost the mail, so if i could help by giving my story. For awhile this site was my only link to the world, I would come home from the hospital and go online.

I'm sorry it took so long but If i could help anyone who is going through the same experience I would love to help. Diana