Name:: Chris       

Story::     After my second dose of Azulfidine, my thighs become puffy and heavy, my legs became partially numb, and I felt lightheaded. I called my doctor and over the phone she said it was a drug reaction, stop it immediately and go to the emergency room if I felt worse. I can't remember the actual sequence or timing of when the additional symptoms appeared but at first I thought it was the flu. The rim of my lips were very dry, my lips and face became puffy and blisters began to form on my lips. At first I thought it was a herpes outbreak, but had never had herpes with so many tiny blisters all over my mouth. My gums were purple looking and it felt like my teeth were going to fall out. I could tell that something was drastically wrong from the way I felt. I had difficutly eating & swallowing as my mucus membranes swelled. It felt like my esophagus and all abdominal internal viscera were swollen and tender. My lower lungs felt like they were filled with fluid and I had a strange watery cough I had never experienced before. I hesitated going to the emergency room because I was feeling too sick to sit in the waiting room for the usual long wait of several hours, I knew I couldn't tolerate the cold temperature and drafty condition I knew existed in the emergency waiting room. In restropect I should have gone to the ER, but from previous very bad experiences with hospitals, I was worried they wouldn't listen or do anything helpful. I took Valtrex (the usual treatment for Herpes) and applied Aloe Vera & drank Aloe Vera juice and put herpes ointment on my lips, warm salt water in my mouth, when Monday came I went to see my doctor who diagnosed Stevens Johnson Syndrome and after listening to my lungs, said I was wheezing. She gave me an inhaler for my lungs, Benadry and Methylprednisone in a Medpak (weeks treatment w/tapering doses). I got some degree of relief, especially from the swellings but had a long way to go to recovery. I had a fever that rose and fell and was weak and bedridden. I needed a second weeks treatment with another Medpak of Methylprednisone. It tooks at least 3 weeks to recover. I thought I had fully recovered but now more than a month later, am not so sure because I'm having great difficulty with digestion and my addominal viscera seem to expand and push out or sometime upwards under my rib cage. Recently the pressure got so great I apparently put pressure on my vagus nerve causing my heart to malfunction, slow down and actually stop. This time I had gone into the ER just before my heart stopped. Now I'm not certain if this development is a result of the Stevens Johnson Syndrom. I'd like feedback from anyone who might know if this is likely.

Name:: Linda Rath       

Story::     We just had a recent death in my daughters family. He was 16 years old. He developed leukemia and was given large amounts ofchemo, then he developed pneumonia and then TENs. His death of TENs was terrible for the family to watch. I just wonder if his death could of been prevented. I would imagine that he also was receiving antibotics for his pneumonia if that what it was. They could not get any cultures to grow but he no longer was producing cancer cells or even good cells.

Name:: Gwendolin Wiegelmann       

Story::    I am 20 years old. When I was 15 I had SJS. It started all of a sudden. I had very high fever for almost a week. When I woke up in the morning my whole body was covered with red spots. I could not see anymore, not eat and go to the bathroom. I looked like a monster..! We went several times to the doctor, but he could not figure out what I had. When no medicine seemed to help, and I almost choked to death one morning I was admitted to the hospital. I spent three weeks in the hospital and was treated with cortisone. I was very sick and weighed only 80 pounds. My eyes were almost shut permanently. A few month later I was operated on my genitals. Today I feel good again. Still, I cannot see in the sun, though. I have trouble concentrating and have problems with my genitals. Sometimes I experience slight setbacks. Then I wake up and my mouth is full with blisters. Since I was diagnosed with this illness I try to find people who have the same problems, because nobody can feel the same pain

Name:: Mary Bowman       

Story::     My mother suffered from RA and Sojrens syndrome. She was prescribed Zonegran. After approximately 7 days on this drug she became exremely ill. She spent 7.5 days in ICU before she died on May 24, 2002. The diagnosis was Stevens Johnson Syndrome. My famliy and I are in the midst of struggling not only with our loss, but the tragic way we watch her die.

Name:: Aleesa Turner       

Story::     When I was around 4 years old, one day my mother noticed big red bloches and spots all over my body from head to toe. I also had a variety of lines over my body that looked as though I had been whiped. After going to the doctors I was rushed to the royal childrens hospital in melbourne victoria australia. After giving me a dosage of penicillen, and after weeks of reserached the doctors came up with the solution that I actually had Steven.J.S. My body became swollan, where I couldn't walk or use my hands. This became a big worrie to the doctors because the spots were in the inside of my mouth and if my throat were to swell up that would mean that I would choak. After spending weeks in hospital, the rash finally went down. 10 years later after getting up one morning I noticed that my feet were swallan and hands. Yet again I was rushed to the same hospital, but after a few hours the swelling was gone. I now where an SOS bracelet, that indicates that I'm allergic to penacillin. Although the doctors aren't 100 % sure weather the peniciilin is the cause, I'm advised not to take penicillin at all. It was a very scarey experiance and at times still find to this day that my feet and hands somtimes swell up with the same tingly feeling.

Name:: Lisamaria Martinez       

Story::     At the age of five, I was diagnosed with Stevens-Johnsons Syndrome. I began to run a very high fever during the last days of our family vacation to Puerto Rico. On the plane flight to California I broke out in what looked like a very bad case of the chicken pox. I was rushed off the plane and straight to Children's Hospital in San Diego California. This was in July of 1986. I remained in the hospital till sometime in September. While in the hospital many tests were done on me--including those for STD's. The doctors had no idea what was wrong with me. Finally, I was diagnosed with SJS.

I don't remember much of my two month hospital stay. I do remember doctors telling my mother that I'd die. I remember the burning acid baths to take off any dead skin. I remember blisters all over my body that itched and burned constantly. I remember my little sister thinking that her big sister had turned into a monster. And, I remember the wonderful nurses who played with me in the play room because I was not allowed to be exposed to any other children.

After my stay in the hospital I was tutored at home for a year. I was not allowed to be exposed to the sun for long periods of time. The sun hurt too much. I was not allowed to eat common foods that many children would sometimes react to because the doctors had no idea what I reacted to.

I was finally mainstreamed into the public school system in the first grade where I was taught braille, cane traveling skills, and many other important skills to being a functional and successful blind person. SJS damaged my eyes quite severely. I do have ear and teeth problems, but I do not know if that is a direct result of SJS. I have a few scars on my lower back, stomach, neck, and face. The scars on my face look like little freckles, and no one has to know any different.

I am now 21 and going to school at UC Berkeley. I am greatful to my parents for being strong and supportive. I am now finally interested in finding out more about SJS and talking to people who have been through the same things I have. I am tremendously greatful to have only lost my sight which is just a mere nuisance and nothing too debilitating.

Name:: Odessa Drouillard       

Story::     First let me thank God after reading some of the other stories about SJS/TEN that my daughter Brittany was not as severely affected by the disease as some other people. My husband and I just recently experienced the nightmare of SJS/TEN. We took our 12 year-old daughter into the doctor because she was running a fever of 102+ for several days and complaining of a sore throat. After culturing her throat and ruling out strep, the doctor, apparently not really sure of what was wrong, decided that she had a sinus infection and prescribed "Bactrum" a sulfa drug. Never having taken this medication before, I was unaware that she may have been allergic to it. On the ninth day after starting the regimen, Brittany woke up with what appeared to be a bright red rash and puffiness on her face and neck. I took her back to the doctor the next day after it seemed to worsen. The doctor was unsure of exactly what it was. I suggested to her that perhaps it was from the medicine, but she seemed reluctant to believe that that was the case. She told us to discontinue the Bactrum just in case and prescribed Allegra. That weekend, it seemed as if the rash was actually clearing up and going away. That following Monday morning, the rash came back full force and had spread to her chest, back and palms of her hands and soles of her feet. We again took her back to the doctor and she said she thought it might have been erythema multiforma. She told us to stop the Allegra and try some Clarinex. Being that she still admittedly was not sure of what was happening, she referred us to a Dermatologist. We took Brittany that same day to the Dermatologist. After taking one look, the Dermatologist was sure that it was in fact a severe reaction to the Bactrum. Both doctors wanted to administer Prednisone, however, I already knew that Brittany was allergic to it. She was given Prednisone at age 2 to try to control her asthma and she broke out in hives for about two days. The Dermatologist advised us that Brittany had blisters on her lips and around her nose and mouth and that if she became unable to take liquids by mouth that we needed to get her to the emergency room for fluids immediately. Ironically, that same night, I went in to her room to check on her around 2 a.m., by then, she had developed large fluid-filled blisters all over her face and neck and one the size of a half dollar on her chest. Her temperature was 103. We kept pumping her with Tylenol, but the fever kept rising. At around 8 a.m. she finally refused to take any more Tylenol and would not drink anything. We took her into the emergency room where she was diagnosed with SJS/TEN and was immediately transferred to Vanderbilt University Medical Center Children's Hospital in Nashville. Fortunately for Brittany and for us, the folks in Infectious Disease Control knew exactly what she had and how to go about treating it. We were told exactly how severe the condition was and what needed to be done and also what to look forward to as the disease ran its course. Brittany spent 13 days in the hospital, most of them in pain. She was on constant Morphine drip and after a few days, was transferred to the hospital's Burn/Trauma Center where she was treated more effetively as a burn victim. Brittany looked as though she had been burned from head to toe. Her skin actually looked blackened and charred. She fought with fevers as high as 104+ every day for two weeks. Her fever finally broke three days before she was discharged. Since she was able to take little or nothing by mouth, she was given a PICC line in her arm which had to be removed 24 hours later because it got infected. It was replaced with an NG feeding tube which stayed in up until the day she came home. Now that she is home, most all of the dead scabs have fallen off of her chest, arms, legs and back. Her neck has some pretty severe black/purplish scars and her lips still bleed pretty badly. The skin on her fingertips and between her fingers and toes is peeling off. She is still pretty weak and of course there is the emotional trauma of her appearance. Miraculously, her face is really coming along beautifully and seems like it will be back to normal before very long. My husband and I were quite shocked at this turn of events with SJS/TEN. Until now, neither of us had ever seen or heard anything about it. Although it was painful for me to look at "my" daughter in the condition she was in, I had the opportunity to see another young lady across the hall from my daughter who was 30 years old with SJS and she was in much worse shape. My prayers go out to her and her family for her survival and again, my husband and I thank God that Brittany's case, although severe and bad enough, was not worse. As far as we know, her eyes and internal organs were not affected.

Name:: Kris Storkel       

Story::     I looked up steven johnson's disease on the search...the reason being is because in 1996 I was diagnosed with steven johnson disease. I had sores on my feet, hands, legs, arms, but worse yet inside my mouth and down my throat... when I went to my family doctor, he told me he had no idea what was wrong with me so he sent me to a specialist, who had eventually told me that I had the steven johnson disease, which was caused by an allergic reaction to a tanning bed. they told me that my immune system was attacking me so they put me on prednisone which is a steroid to shut down my immune and they put me on a anti viral medicine called famvir...ever since this comes back at least twice a year, and my life has never been the same. is there anything i could do different to prevent this from coming back or at least not so bad.

Name:: Ray Harris       

Story::    Back in early summer of 1966, I was only 8 when I was being treated for some form of childhood disease. One day I came down with a fever and Mom took me to the Dr. where he thought whatever he was treating me for in the first place was trying to come back so he gave me another shot of Terramycin. The next day I was worse and when my parents took me to another Dr. he took one look at me and told my parents that this might be the start of a drug reaction. We live in rural part of Arkansas where medical facilities are limited, so he urged my parents to rush me to Little Rock. Luckily the Dr. recognized the signs in tiem to get me there before it was too late. It is only a 3 hour drive from where we live to Little Rock, but by the time we got there I was already showing severe burning of the skin. I spent 14 days in the hospital, 8 not expected to live. And if not for my Dad, I'm not sure I would have. He spent night after night pulling dead skin out of my throat so I could breathe. The reaction left 3rd degree burns not only on the outside of my body, but the inside as well. My Dad urged me to keep going and never let me kow how bad I was. I never knew just what he was going through until I had kids. And while I have never had to face such a challenge as he did, just having kids sick with normal things makes me apperciate what he did for me. A few months after leaving the hospital my left eye starting showing signs of ulcers, and other problems linked with SJS. At one time I was scheduled to have it removed, but when I went in it had healed over and didn't have to be removed. I lost all vision in it, and only limited in my right eye. I also suffered with the usual problems of light sensitivity, dry eyes, and other things associated with SJS.

But the Lord has blessed me with the life I have today. I am legally blind in my right eye, but see well enough to do pretty much whatever I take a notion. I am married and have three wonderful boys who make me keep on going. And they make me relize that sight is not what live is about, and there is so much more to it than that. I do have a appointment in Boston at the Boston Foundation fo Sight in mid August. We are hoping for some help, but know in our hearts that either way we will be fine for now and in the future. So for all of you SJS suvivors like myself, keep your head up. There is hope right down the road.

Name:: Sean       

Story::    I am a Stevens Johnson Syndrome survivor. I had Stevens Johnson Syndrome at age 12, in December 1980-January 1981. We do not know what caused it; there was no medication which I had recently taken which might have been the culprit. Fortunately, the disease has not recurred. I initially had red spots over much of my body which the doctor initially misdiagnosed as measles. Over the next few days, I became so sick that I could barely get out of bed. My skin began to erupt in blister-like lesions; they were all over my body. I remember that my palms were covered with them. Urinating became indescribably painful. My mouth and throat were full of lesions, making swallowing so painful as to be essentially impossible. As a result, I became badly dehydrated.

The doctor came to our house because my condition had become so serious. He revised his diagnosis to Stevens Johnson Syndrome and immediately drove my mother and me to the hospital in his car. The first thing in the hospital was to start an IV because of my severe dehydration; but my blood vessels were so narrow from dehyration that I had to be stuck with a needle seven or eight times before an IV drip could be started. I was trying to be cooperative, but with so many painful needles, I started to weakly scream. A nurse had to guide my mother out of the room and help her sit down. Finally, one of the needles mercifully did not infiltrate, and I was spared any more needles. I was in the hospital for many days. I was so weak that they had to use a special hanging scale to weigh me, because I could not lift myself out of bed. I could do nothing; reading or conversation were impossible. When I was awake, I looked at the snowy landscape outside the window for so long that I still remember details of it now, twenty years later. I saw the day slowly fade to evening again and again.

Groups of doctors and medical students came to my room to see this rare case of SJS. I said it was OK for them all to see me, and my mother relayed my permission. One time there were so many doctors and students that they encircled the whole bed, discussing my case calmly and gravely. I had my picture taken. Because of the IV, I gradually became less dehydrated. I started trying to take small swallows of soda pop. Even a small swallow was terribly painful, but the doctor and nurses kept encouraging me, and I understood how important it was to get more fluid into myself. So I really tried. I found that swallowing was not quite as painful if the soda pop had gone flat, so the nurses would leave open cups of soda pop on my table. I was given a bath in a big sterile stainless steel tub to try to soothe the lesions. Later, it was time for the IV to be changed, but the doctor told me that if I could eat and drink for myself, then they wouldn't have to put in a new IV. I was finally able to take a few tortured swallows of some pancakes. Before much longer, I was discharged from the hospital. I was home, but I was still in bad shape. I would lie awake in the middle of the night having strange auditory hallucinations. Hearing the same thing over and over, and knowing it wasn't real, was enough to drive anyone crazy.

Gradually, I recovered. I stayed home for a few weeks until I was strong enough to return to school. I got back to my usual healthy level of energy and could do all of my usual activities. I was no longer in pain, but the lesions had not entirely healed when I went back to school. I remember that the blister-like lesions on my palms were still plainly visible. A clerk at Radio Shack asked me if I had spilled battery acid on my hands. Over time, the lesions disappeared. I recovered completely and had no lasting ill effects from the disease. So it is possible in some cases to recover completely from Stevens Johnson Syndrome and to go on to have a full and productive life. I know that not everybody with the condition is nearly as fortunate, so I count myself as lucky.

Name:: Beth R       

Story::    When I was ten years old i suddenly became very sick. I felt ill and was having hot and cold flashes. I spent the night at my grandmothers house and the next morning I had broken into a rash on my upper thighs. My grandma and mom being paraniod for my medical conditions,(JRA, auto immune system, etc.),took me to the emergency room. I was sent home with the diagnosis of Fifth's disease. By the next day I was even more sick and the rash had spread everywhere. I went back to the emergency room and was once more sent home. By the third trip to the ER my eyes had pussed shut and I had started to form blisters all over my body. I was addmitted immeadiatly and the next days were a blur. My mom, I'm sure, remembers it vividly. I had skin biopsies and iv's, nurses coming in at two o'clock in the morning checking my vitals. I did not understand at the time why my mom was cring all the time but I soon found out. I had almost died and I did not even know it. As I recovered I was told how serious it was and was glad I had not been told earlier. In about five days I was out of the hospital but, I was not back to school for at least a month. Now I have become one of the three to eight out of a million to contract Steven Johnsons Syndrome. I am now sixteen years old and glad I am here to tell my story.

Name:: Mark E. Rundell       

Story::    Hello, My name is Mark E. Rundell from Lloydminster Saskatchewan Canada and when I was young around 4 years old I had Stevens Johnson Syndrome and I am on a search for my medicle journal to find out what happened to me , I know a little from what I heard from my parents and I have been writing to maybe you can help me. It happened in 1968 and I was in Saskatoon University Hospital I was in a private room and if anyone would visit had to wear a special uniform, I was in the hospital for 8 weeks ( thats what I heard) anyways I am still looking and if you have any information I would really appreciate it. Thank You Mark Rundell

Name:: Helen       

Story::    In many ways I am very lucky. I had an adverse reaction to a drug prescribed for high blood pressure and was asked to attend an immunology clinic. Whilst there it was found I had another (very rare) disease and was admitted as an in-patient. Whilst undergoing tests for the other disease I was given a variety of medication prior to a scan being done and I had an SJS episode. One dose did it and the drug involved (that time) was isolated as it was the only one in the batch that was new. As the specialist says only I could be allergic to an anti-allergy drug! I was in the right place at the right time when I went into my reaction. I know I react to other things as well but the episode in hospital gave the immunologist the data she needed. In this (typical) episode I started with a rash on my face and then got very hot. I started to itch and became violent. After that I don't know what happened until several days later when I came round unable to stop crying. I have blisters on all my mucosa and also on the soles of my feet. The skin comes off in sheets. It isn't sore as my nerve endings are damaged which is a blessing I suppose. It looks bad enough! The hardest part of all this is getting sent to a specialist hospital to start with. Primary care doctors just want to write a script and get rid of patients that take up too much time. Getting taken seriously is a big problem. Now I am scheduled to have a number of tests to see what else I react to. Some things I already know about and some will be new. Helen in Scotland.