Name:: Eva V. Araiza      

Story::    I am Eva, one of the Filipinas who has this rare SJS disorder. Ten years ago, I was hospitalized after taking Cotrimazine, 3x a day for one week, due to inflamed tonsilitis. Like other SJS patients, I developed a high fever, my face was bloated and unrecognizable due to swollen eyes, mouth and lips full of blisters with cracked and bled. Unfortunately, the doctors had no idea what was wrong with me. It was understandable having the first time they had encountered a case like mine. Thankfully, 3 years after suffering from second degree burn from my face, arms and body (except for my legs) due to intake of the said medication, my skin has returned to its former state. My SJS recurred again in 1998 when I was prescribed Tegretol by a dentist due to a pain on my face. Fortunately my SJS was ten times better than the previous one. I suffered only blisters on my face, arms and body but still I had swollen eyes, mouth and lips full of blisters which cracked and bled again. I was referred to an allergologist and a good gastroenterologist due to frequent bowel movements. It was found out that I have eosinophilic enteritis "allergy of the intestines" and was put under Zadec drug medication several times but instead of getting better I got worse. I couldn't sleep when I take the said drug. I was also recommended for skin tests for me to be able to know what foods I am allergic to. The skin tests showed that I am allergic to wheat, grapes, watermelon, milk, potatoes, a no. of fishes and all crustaceans i.e. shrimps and crabs. I am also allergic to chicken which are injected with anti-biotics. Since the year 2000, my search for cure has never ended. I read a lot of medical and health books, search from the internet and sought help from a no. doctors even from a doctor coming from the United States practicing alternative medicine. I was often sick having allergic rhinitis, allergic conjunctivitis, skin dermatitis and frequent bowel movements due to allergy of the intestines until I met an EENT doctor who introduced me to acupuncture. After two years of acupuncture treatment my allergic rhinitis would only occasionally flare up. My food allergy is now also manageable so is my skin dermatitis. I also sought the help of a no. of iridologists. One of them advised me to exercise regularly because I no longer perspired. She said, my skin was adversely affected due to the 2nd degree burn in 1992. I followed her instruction and took ballroom lessons which I now love and enjoy. She also advised me to drink natural fruit juices i.e. carrot, papaya after waking up, one hour before breakfast which I also followed. In 2001, fortunately, I found a pediatrician on allergy and immunology who took me under her care. She instructed me a total of 2 yrs. abstinence on my fruits and vegetables, 5 yrs. on fish, and 10 yrs on crustaceans diet causing allergies. The good news was after a year, my skin tests showed that I was no longer allergic to said foods except for mango (fruit and tree) and crustaceans. But her instruction was to re-introduce the foods that I was previously allergic to 5-day apart. Today, I know I am not totally cured but at least I am not suffering . I am quite choosy with the foods that I eat, most of which are fish, fruits and vegetables. Thankfully my eyes and skin were not adversely damaged by SJS. These, I am going to give credit to good diet, exercise, healthy lifestyle and acupuncture. I hope that this story of mine would help other SJS sufferers. I would appreciate to hear from them.

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:: Shivam Singh Shekhawat     

Story::    Hi, i m from Jhunjhunu, Rajasthan, India. Im now 20 years old. my father is a E.N.T specialist. I suffered from Steven Jhonson Syndrom when i was 5 years old. i had severe blisters all over my body. The doctors said that i was the 3rd case of this disesase in my state. In the begining i had severe headache and fever and in just 6 hours i got blisters all over my body. I was unconcious for 2 months but now i m normal.though i have problem with my left eye as water continues to drop from it but now i m used to it. I still have marks on my shoulders and chest. I do not take any medicines containing sulfa. thats all about me. If you have any questions you may ask me on my e.mail adderess.

Name:: Falan Howe      

Story::    I was at the age of seven when I fell extremely sick. The doctors/specialists were unsure about whether it was SJS or epidermolosis necrosis. It started of as a fever and the doctor prescribed Pencillin. Over a period of about 2-3 days I developed a rash and fell unconsicious. I woke up in a hospital bed with so much pain. My body went into shock from the pain of the blisters that were starting to burst. The lining on the inside of my body shedded off and went into my blood stream. My scalp started to develop some kind of rash on it as well and a doctor noticed it and cut all my hair off to treat it. If it hadn't been treated, all my hair would have fallen out and would not have grown back. I was in intensive care on a life support machine that breathed for me. I was fed special food through a tube and I stayed in intensive care for 7 1/2 weeks. It all happened so fast and no one knows for sure if it was an illergic reaction to Penicillin or if it was virual. I feel angry about it all. I have corneal scarring in both eyes now which I have prescribed glasses for now. I was very close to dying but had both parents support all the way through. I have been left with lots of dark patches on my face that I have a really hard time accepting on a daily basis. The patches were orginally all over my body but cleared in like 2 years but have taken so much longer to fade on my face. I am searching for some kind of skin lightener. If anyone knows of anything or anyone that could help me. Please email me.

Name:: Skira Orosz      

Story::    I had a SJS about 12 years ago. I'm from the Dominican Republic but I've been living in the US for the last 5 years. Still very hard for me to talk about the theme because I was only 17 years old when that happened. I was a young girl with a lot of dreams and expectation about life. One day I was in a party and sucendly I felt. They took me to the hospital and they did all kind of X - Rays on me. The untrue diagnosis was that I had a beggining of epilepsy. My mother was very nervious and didn't want to have a second opinion, so I was placed on Phenobarbital for 2 weeks. At the end of the second week, I started having some red spots on my body, some blisters on my lips and high fever. As soon as she could, my mother took me back to the Dr. and he said that I was developing a strange chicken pox. I was hospitalize inmidiately and Phenobarbitol, sulfa and others antibiotics were added into my IV treatment. As a result by the end of 2 or 3 days I loss the conciouness,(my family said that my skin turn black like burn chicken and my eye lids were burn together and I got into a coma. My mother was desperate and she try to contact other Doctors. My Doctor decide to descontinue looking me: he didn't have no clue about what was going on, and I was hours away of dying. Thanks God, my aunt thought that my mother should contact an allergist. By that time one 4 Doctors came to my room and told my family that I was close to die. My family run and contact an allergist. He came, but like I was not in the Clinic that he work, he told my mother that he will need others Doctors permission for see me. When he finnly got into my room, he saw me and inmediatly mandeted to suspend all medications and others antibiotic on my IV. He didn't know eighter what I had, but he decided to go look for in his text books something with similar reaction. He said that he pass all the night looking for it and finally he found something called Steven Johnson syndrome which have similar reactions. Thanks God, next day I was under steroids and others medication that helped me recover. I will never forgot. I feel traumatize and sometimes I feel very afraid that this might happen again. As a result of the SJS, I developed an ulcer in my cornea and I had to receive 2 transplants on my right eye. Also, I have a strong dry eye condition that affects me every day. I don't know what can I do but I contact several Doctors in Las Vegas where I live. For the first time I could express a number of feeling that I have inside through this E-mail. I thank every body in this organization for supporting people like me and allowing regular people to know what is this terrible decease. Nowdays, I'm 29 years old, I became a school teacher and I'm trying to make a normal life. I'm also pregnant and concerns are about what kind of concecuence or secondary effect that I don't know will affect my baby. I really would like to heard from one of you that had the same type of SJS experience, because back in my country I hearded about to person that had it but they died. God bless every one Skira

Name:: Jim Tocash      

Story::    I am just now recovering from the worst experience of my life. About 4 weeks ago I began taking a regiment of nutritional suppliments. Little did I know the effect these would have on my life. While I did not experience complete coverage of my body with blisters. What the reaction did to my Mouth, Hands, Arms, feet, eyes, nose, and ears is incredible. They literally burned from the inside out. I have never experienced such pain. I was in delierious pain for alsost 13 days, and reqired a 10 day stay in the hospital in which I could not leave the bed. I feel for all those parrent who must watch their child suffer this affliction. I am 33 years old and have a 4 yr. old. I could not bear to see my child suffer with this.MY thoughts,and prayers go out to all those that endure this terriable afflication. IF anyone knows of research being conducted about this syndrome I would love to gather more information and help raise funds for research.

Name:: Kathleen Bynum      

Story::   My 5 year old daughter, Maygan Alizabeth, complained that her right side hurt. We took her to the emergency room, in which she had a 102 fever. They gave her motrin, and said she was probably coming down with a cold. They did a chest x-ray and said her ribs look good, no broken bones from playing. All the next day my daughter was in pain, from what the doctors said was "brusing" due to the fact she fell the day before at a public pool. My daughter would cry, even though she wouldn't move. See, bruises don't hurt if you don't move. The next day my daughter had a rash on her back, which looked like chicken pox. Later that night it spread so much that it looked like measels. I took her back to the er where the said, "it's some type of hives, if you ever find out what kind, let us know". She still had a fever, but tylenol was given this time. A day and a half later I took her to my doctor. She was much worse, target legions everywhere, swollen hands, fatigue, and still a fever. My doctor diagosed it as Stevens Johnson. He never told me what that was, just labeled it. Said there's nothing that can be done, go home and come back in 2 days. That night my little girls lips were swollen and blackening, I took her the Phx Childrens Hospital. They said yup, it SJ, but the minor form. "Go home, it will get worse, but there's nothing we can do." Okay, so I go home because no one was willing to help me. I did not realize I had the right to demand that they help my daughter. This is my first child who's never needed a hospital. A day later blisters formed in her mouth. She stopped eating and drinking. I took her to another er room where the doctor said, yup it's SJ, "Do you want her hospitalized?" Finally, someone willing to help my helpless 5 year old daughter, and her very guilty mother for not demanding adequate medical services earlier. The hospital gave her fluids and in 2 days she was feeling and looking much better. Of course at the hospital she was diagnosed with Stomatitis, and then later phenomonia. 10 different doctors told us 10 different things. All of which said, yup, no treatment. But later I found out there was. Of course, no one would recognize that it could have been an alergic reaction to Motrin, or another cause. They all said, "Don't know what caused it". My mistake was believing that doctors are always right! Wrong! They screwed with my little girl for 5 days before they would help her. If you or your loved one has been diagnosed with this, demand that the hospitals do something. A Doctor in Arizona told me that an SJ diagnosis qualifies you for a hospital stay... of course doctors hate to do this because of managed care companies who tell them to not hospitalize patients unless you have to. If you're like me, you probably never heard of this disease until it struck you or your family. Please, get literature to your local hospitals from this organization, don't let what the doctors did to me and my family happen to yours. Please contact me if you want to talk, ask questions, or cry. My prayers are with you, Kathy!

Story::    I have suffered from cystic acne since I was 12 years old. I had been to many different doctors who prescribed many different drugs including tetracycline, retin-A, minicin, countless topical drugs and Accutane twice. At the age of 25, still having problems, I went to yet another doctor supposedly one of the best dermatologists in the area who prescribed Bactrum, a sulfa drug, typically used for bladder infections. My skin began to look a little better after a couple weeks, but not completely. After I had been on the drug a month, I noticed a couple tiny red bumps by my wrist that itched like crazy. It was strange enough to go to the doctor who said it was nothing but impetigo, to go home & put some calomine lotion on it. I was running a low fever & I did tell him I was on the Bactrum, but he said that that wouldn't cause it to & continue taking it. The rash slowly began to cover my body. My fever increased, my energy level dropped, I was sleeping all the time. With a fever of 101.5, My parents took me to the emergency room and luckily the doctor on duty specialized in infectious diseases. There were several other things going on at the time to confuse the issue. I had a cat who had scratched my leg & even though the scratch was small, he thought that because of the fever, I could have Cat Scratch Fever. I remember feeling terrible & making a reference to the Ted Nugent song. I also was having my period and was using tampons & so he said it could be toxic shock syndrome because of the muscle aches, especially around my neck. He did say that even though he didn't believe the Bactrum had anything to do with if, I should probably quit taking it, just in case. At that point I had been on the medicine for 5 weeks. So without a diagnosis, he sent me home, told me to drink fluids, blah, blah, blah. Another day & night passed & my fever shot up to 103. I remember not wanting to worry my parents & trying to take a cold bath in the middle of the night, I couldn't eat anything and I began to vomit. I went to the emergency room again the next day. They admitted me to the hospital. It was Easter Sunday and I remember feeling bad that we had to reschedule Easter Dinner. My rash became much worse in the hospital, my skin was a purplish red. I was already allergic to penicillin, so they tried some other antibiotics intravenously & I had an allergic reaction to the antibiotics they gave me. The scary thing is that I in my weakened state informed the nurses that I thought I might be having a reaction. They did not notice because my skin was so inflamed already.The hospital staff pretty much treated me as if I was a leper even going to far as to leave my food trays in the hallway without even knocking on the door to let me know it was there. My parents sspent the entire time with me & they, not the staff cared for me. They tried a total of 8 different antibiotics on me, all of which caused me to break out in hives over the already irritated skin. At this point my skin started seeking a liquid, the clear part of the blood, & crusting over the sores. My ears were affected the most, but my entire face & body were swollen. I remember looking in the mirror & not being able to remember what my "normal" face looked like. I have a heart murmur & the doctors were concerned that I would develop an infection in my blood which could lead to an infection in my heart. At this point one of my doctors decided that they would have to give me "super-human" doses of cortizone intravenously and hope for the best. I found out later that that was the most critical time & if the results had not been favorable I could have died. Luckily, slowly I began to heal. My fever slowly decreased. My appetite came back and I was able to go from intravenous cortizone to prednisone. I was released after being in the hospital 7 days. My total recovery took several months which included careful tapering off of the steroids. Months later when going from 10 mg to 5 mg I awoke with the rash completely covering my body again. I went back to 10mg & then 9, then 8 and I was finally able to go off it. It wasn't til one of my follow up visits that they told me I had Steven Johnson's Syndrome. I felt as if they never really knew what was wrong with me while in the hospital and that they couldn't really tell me anything then. I didn't realize how very lucky I was until reading some of these stories. I did not have any damage to my vision which now I know was a Miracle. I have a very limited number of antibiotics I can safely take but luckily I haven't had much need for them other than a virus here & there. I am now 36 years old and have been in pretty good health until recently. I have been having problems with my blood sugar and have been tested for diabetes & hypoglycemia & actually have had symptoms relating to these conditions for several years. I have suffered from depression which now it turns out may be as a result of the hypoglycemia which may be a result of a unfavorable reaction with a sulfa drug. In light of my recent health concerns I thought I should try to look into my past diagnosis of SJS a little closer and discovered this website. I am concerned that the health problems I am having now are something that could be related to my SJS from 11 years ago. I feel so incredibly fortunate to not have had to suffer as much as some of these other people. I share my story so that it might help someone else. Until this website I had never heard of another person with this condition and had not ever found any real useful information concerning it. With the help of Proactiv, my skin is finally under control. Reading this and realizing that a condition such as acne could have caused me to lose my eyesight or my life helps to put my other problems, health or otherwise, in their proper persceptive. My thoughts & prayers are with those of you who have suffered so much more than I. -Pam

Story::    After reading a magazine at the weekend I realise I had Steven-Johnstons syndrome or Toxic Epidermal Neucrolysis. I still have yet to be diagnosed by my doctor and I had the problem in 1996. I visited the doctor with what was diagnosed as a fungal infection in my toenails and was prescribed Lamisal, an anti fungal drug. After taking 2 tablets, the rash started to appear all over my body. I immediately returned to my doctor to be told I had an allergy to the tablets and to stop taking them. No side effects of the tablets were ever explained to me. Things went down hill from there. The rash started getting worse and my whole body started to swell. I couldn't wear proper shoes and I had to wear slippers all the time. By this time, that rash was all over my body, firey and red. I visited the doctor again and was prescribed prednisole. The day after, I could stand it no longer as my breathing was becoming laboured and I was admitted to hospital. I was immediately given a cortisone shot which did not help. The medication started of 12 prednisole, 1 antihistimine with sedative to help me sleep and a zantac to stop the indigestion I was feeling after all the tablets. I was also applied with aqueous cream twice a day and smothered in vaseline at night to try and get some moisture back in my skin. I asked to be transferred to a ward where I could get specialised treatment and was told there was no beds available, I live in the UK, so therefore my treatment continued on a general ward with special sheets from the dermatology department. My skin started to peel off when I was in hospital and I reached my lowest point when my face swelled up and it got difficult to see. Eventually after 12 days and nights in hospital I was allowed home. By this time the skin on the palms of my hands and soles of my feet were peeling and walking and doing anything with my hands was almost impossible. I still had to get cream applied 3 - 4 times per day which my husband administered. I was advised by the doctor to gradually lower the dose of steroids I was taking. Bad idea....the less steriods I took, the more the skin flared up. Anyway, evetually after about 2 months, I was off the steriods, I had shed a whole layer of skin and I had been off work for 2 and a half months. I asked the doctor for allergy tests to be told, they couldn't pin point the actual ingredient. I was also informed if this happened again, it could result in anaphalatic shock and I would die. Still to this day, I read every side effects of medication and if any side effects are skin rash, I refuse to take them. My only last effects of the disease is I can't drink coffee as I get bad indigestion due to all the steriods I had to take, and I still apply cream to my body everyday. The best cream I found was Vaseline Intensive Care (the yellow bottle) and to this day, I still use. Thanks to the magazine article I happened to be reading, I now have a name for my illness, which settles the mind a bit, but still doesn't help that in the back of my mind, it could happen again any day.

Story::    My story seems almost like most I have read. I am a 48 year old woman who was treated for a urinary tract infection with Bactrim. On the 5th day taking Bactrim, I started to exhibit symptoms of the flu, fever, nausea, inability to eat. When I started to break out in a rash on the 7th day, I assumed that it was measles or the chicken opox since I have never had those diseases and since I have never been allergic to any drugs. When the rash broke out, it was becoming unbearable and within hours went to the local emergency clinic. By the time we saw the doctor at the clinic, I had also broken out in black circles on the inside of my mouth. The doctor mmediately recognized an allergic reaction and started me on epinephrine and steroids to reduce the swelling and had me admitted to the hospital. While I was in the clinic, I got alot of attention by other staff members because they said they had never seen this type of reaction. Apparently it was quite a learning experience for them as well. By the time we got to the hospital (within 2 hours), the rash was spreading down my entire torso, and it felt like I was lying in a bed of red ants. My throat was closing up and I couldn't get anything down. Any pills they gave me in the hospital got stuck in my throat, I started throwing up, and everything was on fire. I was immediately seen by my primary doctor, who called in a consulting dermatologist, urologist, gynocologist, infectious disease control, pulmonary specialist, and was told that my body was burning from the inside as well. They told me that the reaction had to run its course and that it would get far worse before it got better. Boy they were not kidding. Immediately, I was placed on IVS, morphine for the pain, cortisone creme for the burns, had a catheter inserted because I felt that I would die from the burning urine, eye drops for the eyes, lidocane mouthwash for the pain in the mouth, and cortisone creme for the eruptions in my mouth. They stated that I might have to be transferred to a burn unit. They kept running blood work ups since they had to monitor if the internal organs were shutting down. I couldn't get anything down so dehydration was a big factor. The fevers went up to about 102-103 and even with medication, they couldn't keep the fever down. Even my scalp was burned. But my usually high blood pressure was the best it had ever been (which I see now is one of the symptoms of the disease). Every one who saw me could not believe the way I looked. I didn't realize how bad I looked until I saw my face a few days later, I honestly looked like I had been in a fire and my skin looked deep fried. Everything was blistered, I could not eat anything, could hardly drink, my eyes were in great pain, and every orifice was affected. One of the doctors worst fear (besides the internal organs shutting down) was that the skin, which would normally peel off like a bad sunburn, would slough off in huge folds and would require skin grafts and infection control. When the skin started peeling normally, and my internal organs kept working, they actually believed that I could live through this and come out unscathed. I spent almost 2 weeks in the hospital and am now recovering at home. I can honestly say that it was one of the most horrible and painful experiences of my life but I am lucky. I am expected to make a full recovery with no permanent scarring and my eyesight and mucuous membranes of my mouth and nose are expected to return to normal within a few more weeks. I hope that I will get some energy back and maybe in a few weeks, food will taste better and be easier to eat. I had never heard of Stephens Johnson syndrom and nothing was ever mentioned to me of this disease until after my discharge from the hospital, I found this website while searching allergic reaction to Sulfa and when I inquired with my doctor, they stated that this was their diagnosis. While in the hospital, most of the nurses said they had never seen a reaction such as mine and only a few nurses who had worked either burn units or cancer units had seen symptoms such as mine. So apparently this is certainly not typical drug reactions. I would love to hear from anyone similarly affected as I am wondering where I go from here and if there is anything else the doctors missed telling me.

Story::    Three weeks ago my son got Stevens Johnstone syndrome and now he has developed diabetes type 1. He is 22, 6ft 7 inches and very fit. Has anyone heard of a correlation between the two?

Name::  Elaine      

Story::    My story started in 1987, when I was working as a dental nurse in London. I had the HepB vaccine as you are required a couple of days later I was at work and had hot burning skin on my hands and arms, the next day I had swollen so much I could not move and was covered in ulcers all over my body, in my mouth over my eyes everywhere. I had high and erratic temperature, the fluid was on my lungs so I had difficulty breathing and I was admitted into hospital after two weeks I could see again and had most of my movement back but was still itching and had ulcerations and no diagnosis was sent home 10 days later the problem started again and I was admitted into hospital again for another three weeks still no diagnosis was sent home. I had reoccuring attacks over the next two years and was refered to many specialist until it was diagnosis of SJS was formed. Since that time I have had SJS attacks from codine to cough mixtures and at the moment am unable to work as I have now got another undiagnosed problem of pain and swelling and lack of sensation on my right side which as yet they don`t know why and I wondered if anyone else has had long term SJS attacks and have other problems started for no apparent reason.

Name:: Marie Stephens       

Story::    My name is Marie and i'm 21 years old. I had a severe case of SJS when i was five years old. I live in Southampton, England and when i had it no-one knew what it was. I still have scarring on the back of my legs because my skin kept sticking to the bed sheets and i have a few marks on the side of my face. To my knowledge i was the first person to have SJS in England and recover as well as i have. i would like to get in contact with anyone who has had SJS to talk more about their experiences.

Name:: Bonnie Kay Landriault       

Story::    I had this when I was 8 years old. That was in 1972. The doctors first thought I had German Measles but I had been vacinated for this. It took them 2 weeks & several conferences with multiple doctors to diagnose the syndrome. At that time it was known as Steven Johnson disease. I was not on any medication at the time so mine was not an allergic reaction to medicine. It could have been trigered by other allergens though. All I can remember is blowing up like a balloon, itching like crazy while watching my skin peal off, and the god awful eye drops & suppositories that I had to be given every day. I even had to under go a pelvic exam because this is known to spread to any orrafice that a person might have. My Mom was informed by the doctors that if it had spread to my vagina I would be facing death. I don't know if this is true or not as I couldn't find much about it when I got older. The only info I found was that it occurs for unknown reasons in the first & third trimester of life and that if you get it as an adult it is more severe than what a child gets. Any way I survived this but it did change how sensative my skin & eyes are to the sun. I can not stand bright lights to this day & it took nearly 20 years before my skin could tan.(not that I sunbathe, but I do go outside here in Texas)

Name:: Soheil       Email:: soyazz@freenet.de

Story::    good morning dear helpers from this organisation...i am a sjs patient and live in germany ! i was very happy to find such a side for sjs patients, but under the menu-point "contact us" there are so many addresses, which arent actual...the most arent reachable!!!could you send me addresses e-mail addresses from people i can reach in spain or boston or england or south america...because my origen is iranian and half spanish...i have been last year in boston in dr. stephen fosters office...you could add my e-mail-address in the list please ...so that the people with sjs can contact me too! i would be very happy to get an answer from you and wish you a nice day...dont forget to contact me....my address: soheil yazdani, martinstrasse 22, 64285 darmstadt (germany near frankfurt), telefon: 0049- 6151. 15 45 82 ..nice when i hear from you soheil y.

Name:: Maureen       

Story::    Hi, I began taking Wellbutrin on Aug. 5, 2002 for the purpose of smoking cessation. On Aug. 20, I began to experience a terrible itch on the palms of my hands and fingers. The following day, I was itching everywhere and had welts on the back of my neck. I took Benadryl for the itching and called my doctor. He was sure I was having a food allergy reaction. By Aug. 22, I had a terrible rash around both backs of my arms, down around my sides (under armpits). Some of the areas had a whitish center as if they were about to erupt. I went to the doctor and after being seen by 3 doctors, the conclusion was that I had SJS. I was taken off Wellbutrin and was put on Medrol. I was told this is rare especially in adults. I've known several people who have taken Wellbutrin/Zyban and have not had any problems with it. I guess I was one of the few unlucky ones. It is Aug. 26 and I am still itching but the rash has improved quite a bit. I go into the doc today for a follow up. Hopefully I will not be experiencing anymore problems.

Name:: Victor Edgardo Fajardo       

Story::    I am 25 years old. I have Stevens-Johnson Syndrome since I was 5. I have a corneal ulcer in my left eye. I am loosing my sight in both eyes. Light bothers me terribly. I use artifitial teardrops such as lagrifilm plus. If you know of any hospital where they can amelioirate my disease, please let me know. Thank you.

Name:: Tina       

Story::    My daughter is now five years old, and a perfectly normal-happy-sometimes bratty-inquisitive five year old. In July of 1999, a few weeks after her second birthday, she was diagnosed with Stevens Johnson Syndrome. One night, after taking her to the zoo, I noticed a slight rash on her neck below her left ear that went down her back. I thought that she had maybe had a run in with some poison ivy. I gave her an Aveno bath, but a few hours later that rash started developing small blisters. My mother-in-law commented that they looked a little like chicken pox, so i pulled out the benedryl, and called myself out of work the next day so I could get her to the doctor. That night, I watched as a bruise just developed-completely out of nowhere-on my child legs, between a few of the welts, as she was watching a Teletubbies video. Still thinking possibly chicken pox, I took her to the doctor the next day. Being only two, she wasn't able to communicate to us how badly it hurt, how terrible the itch was, or how difficult it was to swallow. At this point she looked as though she had been beaten head to toe with a broom handle, she was covered in huge welts, and what skin wasn't welted was brusied. Her pediatrician took one look at her, and told me to get her to the hospital immediately. I was confused, still thinking chicken pox? Bad case of poison ivy? Did she get stung by something, whats going on? The hospital at first wasn't sure, they kept telling me that they hadn't seen anything like this. It took many tests and many doctors and what seemed like forever for someone to tell me that my daughter had Stevens Johnson Syndrome, that it was very rare, that it was usually an allergic reaction to medication (they were thinking that it had been triggered by the antibiotic she'd been on for an ear infection) and that once we eliminated the trigger, she would be fine. But that isn't so. She has not touched penicillan since that day, and she has had several recurrences (though not one as bad) since that day in July. We've had some issues with the children, and I hate to say some parents also, in the neighborhood who don't understand that the welts ARE NOT contagious, that there is nothing for them to fear, that she should not be treated any differently than any other 5 year old. She has some trouble with heat, she can't be in the sun for long (try keeping a 5 year old inside during the summer!) or even run around and heat herself up, and has a tendency to bruise very easily. I am still paranoid for her eyes, I have to tell myself day after day that she only has to wear the helmet when she's on her bike, and NOT as a constant fashion accessory, and I over react to every single bug bite she's gotten just in case it isn't a bug bite, and it spreads. Thank you for sharing your stories on this site, and for allowing me to share ours.

Name:: Dr. P. I, MARTIN       

Story::    I AS A TREATING DOCTOR WANT TO KNOW ABOUT HOW A HERBAL AYURVEDIC POWDER NAME SUDARSHAN CAN CAUSE SJS. HERE I AM TREATING A CASE OF SJS WITH STEROIDS AND HE HAS IMPROVED IN 24 HOURS BUT HAVE YOU EVER COME ACROSS HERBAL MEDICINES WHICH IS COMMONLY USED IN INDIA CAUSING SJS ? PLEASE REPLY ON EMAIL. THANK YOU. DR MARTIN