Name:: Jack Foley       

Story::    I was diagnosed with SJS in 1994 (I'm 54 now). I was told I had a severe reaction to food (not meds). Since 1994 I have had several reactions attributed to food sensivity. I am a 100% disabled veteran. SJS was significant in the loss of my teeth. My lips have swollen to the point of splitting and it has taken several weeks to recover from the more serious attacks. The reason for this story is that this site is solely dedicated to SJS as a reaction to meds. Since SJS is also a result of allergic reaction to food... why doesn't this site address this aspect. Other sites I visited attribute food as a cause of SJS and other say it is ideopathic. Any insight would be appreciated.

Name:: Beatriz Vicens       

Story::    When i was 21 years of age I had an allergic reaction to septra. I thought that I had the flu. I am now 38 years of age and have permanant demage due to the sjs. This happened over 17 years ago and I still can feel the egony I went through. I lost my nails my eye brows,lashes and have had several eye operations. I am still getting treatment from this disease. Just when I think its over something else comes up. I have learned to deal with everything one day at a time. My heart goes out to each and everyone of you. Sincerely Beatriz Vicens 3222 W. Diversey Chicago, IL 60647

Name:: June Maharaj       

Story::    This is an update to my earlier story. I had surgery on my left eyelids on Feb 18th. So far it appears to have been successful but time will tell whether I have a 100%cure or whether I need to have further surgery to fine tune. But I feel like I have finally come close to a solution for what has been an uncomfortable and potentially disatrous eye infection. I am scheduled to do the right eye on April 1st. Dr. David Tse at Bascom Palmer and his team did a remarkable job on a very unusual condition which they had not seen before. So I am feeling very relieved and optimistic about the future!

Name:: rcboswell55       

Story::    My sister's grandson had sjs and it is new to us. what can we do to help Sage??? Will this effect him emotionally. He is 6 yrs. old. So far they put a catheter in him and a tube down his throat to feed him. It is a great feeling to talk to someone who knows more. Sage is going to be OK. He is feeling so good. They took the tube out of his mouth, and no more catheter?? He ate a hot dog. Also he politely ask his Grandmothers "Could you please go get a cup of coffee? I need some peace and quite" We expect he may be home this weekend. I believe with all my heart the the prayers spared him from all the awful things this illness could have done to him. Thankyou so much for your support. Claudia

Name:: Sam Burgin       

Story::    This is actually my son's story: Jeffrey, six years old, was diagnosed with SJS on 20 Feb 2003. This diagnosis came a week and a half after the first symptoms appeared. He started with a raspy cough; three days later he presented a fever. The fever (102-104) continued for four days. He woke up the next morning with blisters all over in his mouth. I took him to the ER, where they said he was dehydrated and had stomatits (mouth sores) as a result of the dehydration. They did X-ray him to check for pneumonia -- they find slight irregularities, but nothing to be worried about; and sent him home after 4 hours on IV fluids. By the next morning the blisters were now on his face and neck, mostly around his mouth and nostrils. I called the ER and they said to just watch him until his follow-up visit with his doctor the next day. I bathed him that night and did not find any more sores or blisters. But by the next morning he now had blisters spread over the rest of his body. We went to the doctor. It took him all of one minute to say, "It sure looks like Stevens-Johnson Syndrome. He needs to be admitted immediately!" An hour later he was settled into a room at Doernbecher's Childrens Hospital in Portland; and several teams of doctors were being assembled. By the next day he had been seen by a team of dermatologists, infectious disease, family medicine, opthamology and urology. Jeffrey had not been taking any medication prior to this, has never been hospitalized; he's never even had an ear infection! After more tests, X-rays, and cultures, the doctors ruled that his SJS was his immune system's reaction to mycoplasma, a type of pneunomia. He was started immediately on a treatment of steroids and antibiotics. Within 12 hours all the blisters appeared stopped in their progression, and no new blisters appeared. Finally after 7 days in the hospital he was discharged and allowed to continue his recovery from home. : ) Our main concern now is after losing over 10 pounds (his lowest weight being 36 lbs.) we need to keep fluids and food going in. We have been told there are only remote chances of this recurring, but is harder to "guarantee" when a specific cause in unknown. Jeffrey shows no signs of any long-term effects, but of course only time will tell. Now we have a new set of worries -- and if anyone can pass on information it would surely help -- Jeffrey's 2-year-old sister is now showing the same beginning symptoms: a raspy cough for a couple of days, then the onset of a fever. Has anyone heard of a predisposition, if you will, through genetics or otherwise of SJS occuring to more than one person in a family, namely siblings, or for a pregnant woman (that would be me)??? I'm hoping that it's only the pneunomia symptoms -- she'll be seeing the doctor with Jeffrey in a couple of days.

Thanks for listening to our story; it's very catharic to express our feelings and concerns this way. My tenderest thoughts and prayers go out to all who have and are suffering with SJS, or with someone with SJS.

Name:: Kevin James Hurles       

Story::    hello my name is kevin james hurles, wen i was only 4 (1988) i had SJS. i was very young but i remember alot about it. i got took to monklands hospital in coatbridge where they had to give me a special sand bed coz the covers and a normal bed hurted my back. i can remeber that i had blisters all over my body and the nurse would come in every day and gradually burst them. everyday i had people comin to visit me who from universities and colleges and the media also took there turn with me. I was in such a bad state with it that the doctors told my mum and dad that i wasnt goin to survive. well now that im 18 years old and i realise how close to death i came and how rare it is for a boy as young as 4 to have the disease im tryin to find out exactly wot SJS is coz no one in my family knows. thank you

Name:: Lisa Krause       

Story::    In The spring of 1994 I came down with a severe sinus infection and was perscribed amoxacillin. The infection did not respond to the antibiotic and it got worse. Two weeks later I went to the doctor again. I was given a mono test and a perscription for Bactrim. I started taking the Bactrim and within seven days I was running a temperature of 104. On the ninth day of taking Bactrum I answered the phone and went upstairs. I became extremely dizzy and layed on the bed. Luckily my mom came that night to check on me. As soon as she saw me she said get up you are purple. You are going to the Emergency room NOW. I told her I was to dizzy to go down the steps, so she helped me then I passed out. I vaguely remember the ambulance ride and wakeing up in the emergency room. Luckily for me the doctors suspected the Bactrum and discontinued it immediately. Three days later after I was poked and prodded and tested for everything that the doctors could think of includeing rocky mountain spotted fever, I was released with the diagnosis of SJS. I feel very lucky that my mom came to check on me when she did, and the doctors suspected bactrim was the cause of my temp, the reddish purple color of my skin and my swollen lips. I tell my story to bring awareness to SJS and to let those diagnosed and their families know that they are not alone.

Name:: Brandi       

Story::    I am 17 years old, and last summer I had my wisdom teeth cut out. I was put on amoxicillin and a few days later i had an ulcer pop up in my mouth. I didn't think much of it, because I wear braces and that happens all the time. The next day I went out of town for the day with my parents and by the time I got home my mouth was full of ulcers- my lips were so swollen they touched the top of my nose. I couldn't eat, I couldn't drink- it was the most miserable time of my life. There aren't words to describe how it feels. Anyway, the ulcers continued down my throat and on the roof of my mouth and my tongue. My surgeon then prescribed me another medication to help with the pain and treatment of SJS, and to our horror, I got Thrush on top of all this. I went to the surgeon's office to have IV's so I wouldn't dehydrate or starve, for that matter, because there were a lot of cases of West Nile virus in our local hospital. I was put on a steroid pack and after a few more weeks of pain it was over- but in the process of healing it dried up over my braces- and had to be ripped away from them- AAAGGHHH!!!! But, it ended eventually, and I still get a few ulcers every now and then, and not too long ago I even got one on my leg and two of my fingers. My braces will be off soon so hopefully it will finally be over.

Name:: Ashley       

Story::    My name is Ashley and i am a surviver of SJS the summer of 2001 and i have talked to several derm. doctors about my dscolored skin and every daoctor i have seen so far has said that it would heal almost completely after a year and it is now 2003 and i have seen changes but not a big difference. what would u suggest i should use to help the process along.

Name:: Angela       

Story::    My story is about my then 18 yr old son. It is such a long story like most I have read. We believe the SJS that my son experienced was caused by an antibiotic administered for a double pneumonia that he had. He had the typical symptoms of severe conjunctavitis, blistering sores, mouth lesions, etc. We went through all the procedures in the burn unit...the feeding tube...the IVIG..like most people. and now it is almost 1-1/2yrs later. He still has scars from the lesions all over his upper body. And has constant tearing of his eyes..He soaks the neck of his t-shirt by the end of the day....just by constantly wiping his eyes..We are not sure if the scaring will ever go away and the the tearing of the eyes seems to be a lingering issue as well....I have read a few stories about others who have had to endure the indisiousness of this syndrome and my heart aches for all of them...It was such a difficult thing to watch anyone endure...least of all your own child. Anyway after reading the stories and searching the website I havent seen anyone who mentions lingering scaring or tearing and If anyone has these symptoms after being symptom free for as long as he has..I would like to hear from them...I am not really sure what to do for him. Also my son was diagnosed last week with bronchitis..and was prescribed antibiotics and within 5 days he had mouth lesions ...He immediately discontinued the meds...and to date has no lesions anywhere but his mouth..We were surprised to see this syndrome reappearing. And it makes u wonder if there isnt more to it than we or the doctors even know..He is using orajel to relieve the mouth sores and is hopefully going to recover ...but what do we do for the next infection?..(this is a strange and scarry thing) please reply if u have information that relates to my story...Thank you. Angela

Name:: Tim       

Story::    i had steven johnson syndrome, for which i was hospitilized 21 days for,it was from antibiotics, this happen in july of 1992, sinces then ive had recurrences of it, i cant take asprins and have to avoid the sun as much as possible, it damaged my imunity system and my eyes, as to some that have it , i would like to ask a couple questions, what has it been like for you after you been out,as to medicaly and mentaly? as well emotionally,do things apear differently befor you came down with s,j,s? as to what you see them as now? are you taunted as to the syndrome by people and after afects to it?medically do you function as you did before it happen?i was much lucker than some of the pictures ive seen, i did have the lesions,mucous membranes of the mouth,eyes,and genitalsfever sore throat,and pneumonia. as well as my eye,s the lesions where all over my body such as some of them pictures, they spread such as yours or some of you ive seen in them pictures,i know how it feels do some of you feel unhappy as of this day? do you feel depressed alot?when you write things do they come out as the thought or as it seems you where writting things out on paper?do you get spells as of some what being incoherent or of a delirousness? or spells of a shaking or quivering?or a shortness of breath? or at times your boby felt real light then real heavy? have you had trouble with your glans or jaws? or your vision, then with in a couple days or a week come back as normal as we can feel? i was never alergic to the antibiotics ,for which was penicillin and keflex i was told it was utilizing both to gether, i had to go to another haspital to get help over this, as to the questions asked aboveare things thats happen to me after words, and i dont drink or do drugs most of the time these things happen to me while i was working, i was told by a doctor befor i got out that a every day common cold could bring a recurrence back as well as it could be of something i could eat, i all so have gastroenterology problems the linening in my stomac i dont feel as tho im incapable of doing things as it may sound. well this is my storie ive never had a law suit over this,i consulted a lot of lawyers at the time over this but none of them would take it,they didnt belive me. i would like to hear as of some concerns of any reactions you may have encountered of sjs,ive studied this for many years trying to find an answer to be healthy

Name:: Lorrie Fitzgerald       

Story::    I went into two different hospitals. It all started February 14th of this year. I went to our a local hospital. I was there for four days. I was one of three people that had ever entered the hospital this year as far as I know with SJS/Ten. They didn't have the wound care facility or physicians there to care for me and I was sent to UVA of Virginia in Charlottesville. I had taken the drug plaquenil prescribed by my arthritis doctor for rheumatoid arthritis for ten days before I began to develop bee sting lesions, fever, and then, blisters. Which spread from my chest, down back, across my arms(inside) and down the front part of my thighs. I just didn't know when to seek help for myself. I called my arthritis doctor several times about the rash that was coming on my body but she said it was up to me to decide if I needed to go to the hospital or not. Some times I get angry and want to blame her. I say to myself, if she has only been willing to look at the rash the second day I noticed it by the third day it was rapidly beginning to spread. So, I went to my family doctor and he started me on a prednisone therapy, you know, 3 pills for 3 days, 2 pills for 3 days and them 1 pill for 3 days. It seemed to work a little but the rash and blisters were spreading. By the fifth day, by husband takes me to see the arthritis doctor that prescribed the plaquenil and she isn't in. She only works 2 and 1/2 days a week they told me. Her nurse told me to go straight to the emergency room after looking at me. And my husband insisted she look at me. My arthritis doctor I have always liked. She has treated my condition now for 2 years or more. I'm not angry at her, yes, I am and I need to forgive her but. It really isn't her fault at all I guess. She couln't have known the drug would cause such damage to me. I just wish she would have looked at the rash earlier and said for me to see a doctor sooner. But this drug worked way too fast, with my body. Something went wrong. And I sure would like to know what. Anyway, I was in UVA from February 18 until March 1. I could have died, but God let me live. Only he knows our appointed time and I know he still knows mine. The doctors and nurses said that I came at time that my life was saved. I want to thank God for giving me life and allowing me to live to tell my story. But there will be some that will not live. I would like to say to the makers of this drug to please take it off the market or provide consumers with ways of testing drugs to know there effects on them or make physicians knowledgeable about how to test patients with new drugs before giving them full dosage. Anyone taking this drug is asking for their lives to be taken away from them because the side effects of this drug happen so fast doctors had to do things quickly to get the toxic drug from my system and I am still not healed yet. My skin I pray will be normal again with no scars. This is my prayer. I may scar on my inner thighs. I still want to go see a dermatologist for follow up.

Name:: Penn Street       

Story::    I am 34 years old and today I talked with a mother of a 4 year old in Houston who had SJS last year. My heart broke as she told me that she thought she was the only one who has endured this tragedy. I was 9 when SJS chose me. At the time no one knew what it was except a doctor in the ER who had seen a case in medical school. I was in the hospital for three months. I blocked most of the pain. From age 9 to 19 I had over 20 eye surgeries and none of them helped. I am totaly blind in my right eye and some vision in my left eye. My husband says my eyes look like dolphin eyes.

In April of 2001 I went to Houston to visit a friend and see a doctor that came highly recommended. His name is Dr. Pfluegfelder. He started me on a new tear. It has taken my hopless right eye to being healthy and alive. It has taken my left eye from 20/400 to 20/60. It is a miracle! A doctor takes my plasma and turns into tears. They have had wonderful success with SJS victims using this. When I was there a month ago I left my number for anyone who has had SJS or any family members of SJS victims to call me. This is how the mother of the 4 year old reached me. If anyone out there wants to talk please call me toll free at 1.800.634.8401. I feel like I am the only living adult who has had this as a child. My prayers are with all of you brave souls. Penn Street

Name:: Brenda Cooper       

Story::    Last month 2/03 I went to doctor was told I had an urinary infection and was given bactrim I was to take 2 pills aday a total of 6 pills I took 3 pills and notice my lips were itching and getting dry the third morning I woke and notice my lips were swollen 3 times the size with bloody blister and my mouth was full of sores and my glands were the size of a quarter in my neck and when I went to bathroom it burned I had a bad yeast infection . I called my doctor and told her what was happening and she said I had a reaction from the sulfa in the medicine and to stop taking them and come in I was on vacation in another state and didn't know any doctor or have insurance to go to the ER. I couldn't eat nor drink for 4 days came back home was weak and had headaches for a week ,went to doctor was told had a very bad reaction to sulfa . Now my eyes itch constantly and the plams of my hand and bottom of my feet are peeling and I have no energy and constant headaches and my whole body itch and is dry . Does it sound like I may have had a mild case of Stevens Johnson Syndrome?

Name:: Adriane Belcher       

Story::    In 8th grade I devolped a blister on my lip I thought it was just a fever blister, but I was wrong. I went on though breaking out blisters on my body. Mom finally took me to the Dr. but he didn't know what was wrong so he sent me home in pain. I couldn't eat or drink for 2 days. I finally forced myself so I don't get hosplized.I finally got realef and was better in 3 weeks. I broke out again right before 8th graduation and I looked horriable for graduation, but I went on. Then in 9th grade I broke out again right at Thanksgiving so i missed dinner. Mom was upset and finally found a Dr. On December 10, 2001 I was digionsed with SJS. I have been taking pills ever since then to prevent a breakout. I only had one break out since then because i took the wrong medicine. So I am doing a lot better and since I found this site I have found more help. Thanks!!

Name:: Julie       

Story::    I am writing to you from Birmingham England.My daughter contracted SJS in August 2001,at the age of 3 years old.After many many months of searching to try and find another family that has had to experience and suffer this terrible disease in England,I have found no one.SJS seems to be extremely rare and hardly anybody(in the medical profession or otherwise) knows about this disease in England. There doesnot seem to be any support groups at all,there just seems to be a total lack of knowledge on this disease.Therefore to find this site is wonderful for my daughter and my family,atlast I have found people who can totally understand what my daughter and my family has had to experience.

Name:: Nicole       

Story::    It was in September of 1993 when Nicole complained of a really bad headache while we was getting ready to go to the fair. While at the fair she got worse so we came home. When we got her home I gave her some tylenol thinking that this would take care of the problem. The next day which was Saturday she was running a temp of 102-103, I called Dr. and they said to keep her on the tylenol every 4 hours and call if it got worse or didn't help. This was done for the entire day then Sunday she woke up and her eyes were kind of red so My husband and I figured that her allergies were kicking in so I started her on Benedryl, Monday she woke up in the morning with little red bumps on her body I had enough I took her into the Doctor so that he could see what I was talking about, he diagnosed her with the measles, even though she had her vaccinstions there is still a 10% chance of getting them. So I figured OK this is just my luck and we can ride it through the course. By the time Carl (Nicole's Dad) arrived home from work she was starting to blister. We called the Doctor and he said just keep the tylenol and benedryl going. I did this. When the evening sat in and it was time for bed Nicole was so miserable that I laid on the floor with her all night and maybe got 3 hours sleep. When the alarm clock went off the next morning for Carl to go to work, she let out an in godly scream and said that she couldn't open her eyes. As we turned on the light I was completely terrified. Her body was so blistered and she was afraid due to the fact that she could not open her eyes. It took 15 minutes with a warm wash cloth to get the eye open, I called the Doctor again and told him what was going on and he said that we could wait 2 hours until the office opened or meet him at the Emergency Room. Well there was no thinking I said we'd be there in 15 minutes. We woke up her older brother got him ready for school REAL fast then up to the Emergency room we went. Within about an hour there was 5 doctors checking her out and the Peditrician came up with the diagnosis of SJS. She stayed here Klamath Falls, Ore. for about a day and a half and progressively got worse so they life flighted her to Portland, Ore. to Emanuel Hospital, there she went through surgery to take top layer of skin off and they wrapped her in pig skin until her skin grew back. This was the start off a long long healing process. She stayed in the burn unit for about 2 1/2 weeks. Carl came back home to work because we knew the bills were going to start coming in and sure enough when he arrived home on the table was a bill for $30,000.00 It had only been about a week or so since it all started. I could go on forever with all the details and everything but this will give you an idea of what we went through. She had a tutor for about 4 weeks, lost part of her hair, she can't grow fingernails, she has scar tissue on her tongue, glass tubes in her tear ducts, which means that she goes through a surgery once a year for the rest of her life to get them taken out and cleaned. We find little things that has been caused by SJS like her ear canals were messed up so they put her under and deep clean them. I realize that there is so many of you out there that may of had a worse case of this, our thoughts and prayers go out to each and every one of you. Nicole is now 16 years old and a sophomore in high school. She was 9 days into the first grade when this all took place.

Name:: JoAnna Barton       

Story::    05-01-03 Exactly one year ago from today, I had an allergic reaction to penicillin and developed Stephen Johnson Syndrome. I was in ICU for 3 days and in the hospital for a total of 11 days. I was given the penicillin for a bladder infection and within 48 hours I swelled up and I could not breathe. I went to the ER and after given medicine I was sent home. Within hours my body began to burn itself and my eyes became blurry and they burned . I then went back to the ER and after several doctors looked at me they decided that I had Stephen Johnson. I live in Arlington Texas and Arlington Memorial Hospital had never had to treat a Stephen Johnson patient. Only a few doctors had ever seen anyone with the syndrome and so it was very difficult for the doctors to treat me. Even after the hospital, I had to have a home health care nurse come and help me for 2 weeks. Once, I got through the debreveing process and the burns had become managible, I had a period of three weeks where I began to physically feel better. Then I developed a severe case of acne all over my face, chest, and back. Up until this point, I had a pretty good attitude about my condition. I really tried not to complain and to do the best I can to edure the pain, and the hardship of the long healing process. However, when I got the acne I became very depressed and I really struggled for many months. I had always had great skin and I had never had any problems with the my skin and so depression set in and I struggled every day with my appearance and with having to take so much medicine. Also, to make the situation more stressful, I was getting married in 7 months. The doctor really tried to be optimistic with me but I was a very difficult case and she did not know how I would respond to the treatment. In the end, I got married this past march and everything was perfect, even my skin. I have been meaning to tell my story to someone and I found this website today and I thought that I should share. I cannot believe it has been a year since I got sick. It still seems like it was yesterday. But, I just want other people to know how God spared my life and how he blessed my life through the whole ordeal. I am a better women because of the situation and now I feel like I can endure anything. Every once in a while I get a little depressed about it, and I began to worry, but then I look at my face and I thank the Lord for my health, my husband, and for my life. Thank You! JoAnna Barton

Name:: Jeanette       

Story::    In 1991, at the age of six, My doctor gave me peniciillin for strep throat, not long after, my eyes started swelling shut and I had a high fever. After a couple of days my grandpa decided to take me to the emergency room. I don't remember very much after that. From what my mom and Grandma tell me, at the first hospital the doctor thought I had the measles. My mom was put under quarintine at home. Another doctor came by later and knew what it was the minute he saw me, Stevens Johnson Syndrome. I stayed the night at that hospital and was transported to Children's in Denver the next day. My Grandma says the doctors purposely drugged me so I wouldn't remember anything that happened. And looking at the pictures on this site I'm glad they did. I spent two weeks in the hospital's ICU Burn Unit and another four weeks recuperating at home.About a year later I had cateract surgery in my right eye and then about another year later went completely blind in my left eye. I have eye drops and oinment to keep my eyes moist because I have no tear ducts. I am grateful for the sight I do have left (around 20/40 most of the time with no glasses =0). I know it could have been much much worse. I was doing a research paper for school and had the hospital make me a copy of part of my hospital chart. Looking through it I found out the blisters covered over 82% of my body. I'm in Girl Scouts and currently working on my Gold Award project. The Girl Scout committee was impressed when they learned I wanted to do my project on SJS. None of them had ever heard of it. I'll post an update letting everyone know how it went. For those who have suffered from SJS. Keep your chin up. Keep your dreams in mind and go after them. Your all in my heart. Jeanette

Name:: Tracy       

Story::    In May 2002 i thought i had sinus problems as a massive headache would not go away. I was 32 years old and very healthy, so followed doctors instructions and took nurofen and antibiotics. I was admitted to hospital that night with seizures and diagnosed as Viral Enchephalitis. I was in hospital for four weeks and on a range of medicines. I did not know what the tablets were and became distressed at the large number of them i was given each day. I began to refuse tablets, so the doctors brought in another specialist (doctor who specialised in monitoring medicines) I paid him a fortune and he narrowed my medication down to 11 tablets. I was discharge from hospital with these medicines and six days later I rang the medicine specilist and told him my mouth was dry, tongue swollen and i did not feel right. He told me i was overreacting, but i drove to his office and showed him. I notice one red spot on my hand and one on my foot and told me to go home, rest and stop taking Dialatin and endep. I went home and had a fever and rash on my stomach by 5pm. I went back to hospital and was in for four weeks with all the mucous glands effected, eyes glued shut with dried mucous, no lining in my mouth and ulcerations absolutely everywhere. I still have red spots on my stomach and panic everytime someone tells me i may need medication for anything. At this point i have tried one antibiotic but too scared to take anything really.

Name:: rei       

Story::    i had SJS when i was 11 years old. im 20 now. i still can't forget that experience. i had an allergic reaction to bactrim. it's a very rare case here in my home country. the doctors here doesn't know much about it that time, so i was isolated alone in the center for contagious disease pavillion. i had to take all that pain! i can't open my eyes for a month. my grandpa has to clean my eyes with shampoo before i can see. i can't even speak or eat well coz my lips got stuck. i can only depend on liquid food and dextrose for nutrition. i can still remember when i shout everythime they change my clothes because my skin got stuck on the cloth. and everytime i urinate or defecate... i cnt do it without screaming! i survived that, and the day when i'll be released from the hospital finally came... after 1 1/2 months. what i looked like that time made people a little disgusted and scared. i still have scars, i didn't have nails, and only a little hair were left. i had no friends in elementary.. so i just concentrated on my studies. i don't stay quiet when my classmated make a fool out of me. i stand up for myself. i learned the harshness of life at a young age... the doctor was right about one thing though... the body will heal, even though it might take a little while. now that's i've grown, my features changed from a kid to a full-grown woman. the scars on my face are gone now... although there are still some little traces of the rash on my arms and stomach. and the abnormality SJS caused to my eyes before became an asset... i have 7 layers of long, thick and curly eyelashes. no need for mascara! ^_^ and funny... i even became the muse for our college! now that i see the people during my elementary years... they're kinda shy to look at me now. i know they learned their lesson. but i don't blame them... people get scared of something new. something they know nothing about. that was 9 years ago, but the memory is still fresh. im about to finish my course in medical technology. i'm getting some subjects from pharmacy also. after this, i'l proceed to medicine. i want to help prevent people from suffering something like this. and if they are suffereing from SJS, they will need a doctor who understands their situation. i consider this experience as a trial in my life. i'm happy i didn't give up. like what my grandma always says.... it's fun to live life! ^_^

Name:: doreen       

Story::    My Daughter PAULA now 39 contracted sjs nearly two years ago, she lives in U.K with her husband and two children who were only 4 & 7 at the time. Paual was NOT taking any MEDICATION so it is a complete mystery. Her husband took her to the emergency at the hospital as she could not see out of her eyes and had breathing difficulties, while at the hospital she started to come out in spots and they sent her home saying it was chicken pox. He called in the local doctor and again said it was chicken pox, then the next day had to call doctor out again as she was fighting for breath, she was rushed into hospital and then transfered to another, where after extensive tests she was found to have SJS it was the fact that she was not taking any medication that was the big problemn. She was on TOTAL LIFE SUPPORT MACHINES and nearly died, she was in hospital for nearly 5 weeks and lost 2 stone in weight she was so week, it took a year before we realized there was swomething terribly wrong as she kept choking on her food and took her 30mins to eat a very small meal which was ofcourse cold by the time she finished it. She has had 3 blockages cleared and can now eat well and is nearly regained her original weight. The only problem she is left with is her EYESIGHT, she can only see bright colours and hazy outlines. She is going to have an operation this August to reconstruct the eyelids with flewsh taken from inside the mouth and that is to stop the eyelid scratching the eye. Then after that they are talking about 'stem cell' replacement. They have b een marvellous at the Moorfields@s Eye Hospital in the City of London. I feel compassion for all you sufferers out there as you know what a very dramatic two years Paula and all of her family have been through. Thanks for reading this,DOREEN

Name:: Steve Thomas       

Story::    I am a 47 yr.old male with AIDS. After running a fever for several days , accompianied by a sore throat , I went to the emergency room when my fever reached 104. I told the ER Doctor my symptoms and shortly later I was admitted. The attending Dr. thought I may have contracted Lyme Disease , so the IV antibiodics started along with the anit-virals. My nightmare started early on a Sunday am and by Wed. morning I was on oxygen , swollen , and near death. I stayed on morphine the entire time. My skin peeled from every area of my body. The Dr.'s then decided I was allergic to sulphr drugs. SJS can happen to anyone. My heart goes out to all of those who have dealt with this horrible condition. I pray , it never returns. Steve Thomas

Name:: Edward J. Bock Jr.       

Story::    I was only 3-1/2 years old when I experienced a severe reaction to Penicillin. It may have followed a tonsillectomy. It's among the earliest memories I have. My eyes began to swell and something like a foaming at the mouth occurred. At this point I was taken to a hospital close to where I lived at the time around 1960 or '61 in McHenry, IL. Huge blisters started to form over all of my body which were taped & wrapped. My eyes became like enlarged blisters themselves. My toe & fingernails all fell off. I was in the hospital for approx two weeks. Worse still was how I got the Chicken Pox while still recovering from the antibiotic reaction. The only really lasting effect has been the daily issues of pain & treatment of infections, irritations related to scar tissue on the inside of my eyelids & the malgrowth of eyelashes some of which I have recently had permanently removed. I wear disposable contacts which help a lot. Have also had some unsuccessful lid surgery in ’84. I do have some upper respiratory issues, which seems to have worsened in recent years but I couldn't say for sure that it relates to the SJS/TEN aftermath. I know that I am very lucky to be alive.

Name:: Simon Langer       

Story::    First, let me say that I was pleasantly surprised to see a web site for Stevens Johnson Syndrome. For years I never heard of or met anyone who had the disease. It was not until several years ago I actually met someone in Florence, Italy who also had the disease. I was first diagnosed for Stevens Johnson Syndrome in the 1970’s. I was born in Israel in 1952, and like most kids of my generation in Israel, we had very few, if any, childhood diseases. As such, as a child I only had the German Measles. I was never given antibiotics or sulfa drugs. I never used such drugs for over 20 years. However, in the 1970’s I had canker sores in my mouth and the physician that I was recommended to see in Washington DC prescribed Tetracycline, an antibiotic (my first antibiotic ever). Well, as you probably can guess, I had a reaction to the drug. I began to develop blistering, infections and swelling of the lips. The skin infections of red and brown started spreading down my face from my lips down to my neck, and then almost simultaneously began to spread into my mouth and down my throat. While all this was going on I was on a plane trip to visit my parents in Los Angeles, California. When I arrived in Los Angeles, the infections had reached my larynx and I could not speak a word. I was rushed to the emergency room at Kaiser Hospital, and two doctors thought I had a form of herpes. They proceeded to prescribe penicillin, another antibiotic, which I took that evening. Big mistake. The next morning my condition and infections were worse. My face was a mess, and the infections/blisters moved up my face to my eyes. I had extremely high fever and swelling of the face. One eyelid was so swollen it shut my eye closed. I immediately ran over to my childhood doctor at Kaiser Hospital, Dr. Leonard Sadoff (now retired) and the minute I walked into the room he looked at me and said “Stevens Johnson!” I took my notepad and wrote back, “No, I’m Simon Langer.” He obviously recognized me, but explained he had just by coincidence had come across an article about Stevens Johnson Syndrome. Anyway, I was very lucky, since I was immediately put on heavy doses of Prednisone, which saved my eyes and life. He told me that had the fever continued climbing I could have had Encephalitis (brain damage). I was on Prednisone throughout the 1970’s and 1980’s, and took it less and less in the 1990’s and now I almost don’t take it at all. Of course I haven’t taken an antibiotic drug (or sulfa drug, as I was told to stay away from them as well) since I was diagnosed. Over time, I had many reoccurrences when my immune system was low (without even having to take an antibiotic). As time has gone by, the fact I have not taken antibiotics or sulfa has lessened the Syndrome cropping up on me. There are several points I want to make from my own experiences, even though I am not a physician:

1) My family history is that many of my family members are allergic to certain antibiotics, but their reactions are allergic in nature, that is a rash. I am the only one with Stevens Johnson Syndrome (SJS). However, if one has a family history of allergic reactions to antibiotics or sulfa, this should be a warning sign.
2) I was told in the 1970’s (and I know that there maybe further advances today, as the number of reported cases for SJS were very few in number then) that SJS was not an allergic reaction to drugs. That a small segment of humans have a different genetic makeup, and as such a different immune system. The notion of antibiotics is to fight off bacterial infections. When the antibiotics are introduced into one’s system the idea is to fight off the bacterial infection and strengthen the immune system to fight off the infection as well. However, when antibiotics are introduced into that small segment of humankind, the antibiotic has a reverse effect as it weakens the immune system, and once introduced into the system SJS is triggered, which is irreversible once triggered. I was told that there was no cure for SJS, one can only suppress it (with Prednisone). I look at SJS as an autoimmune disease, not merely an allergic reaction. If it was just an allergic reaction, my stopping to take antibiotics, should have ended my SJS. However, my SJS reoccurred over and over again in my case, when my immune system was low. If I got even a common cold, SJS would crop up, and I would nip it in the bud with Prednisone.
3) Finally, my taking Prednisone, although a lifesaver, has had its own detrimental effects in the long run. In the 1970’s I don’t think anyone thought about what effects prolonged use of Prednisone would have on the body. As a direct result of my taking Prednisone over the years, I have Osteoporosis and Fibromyalgia, with extreme bone and muscle pains. The Osteoporosis could have been avoided by taking something to counter the effect of the Prednisone, such as Actonel (which is what I take now). The Fibromyalgia cannot be countered. Just be weary of taking Prednisone for prolonged periods of time, especially if SJS is diagnosed in small children, as the long term side effects can be just as bad.

Name:: Jorge       

Story::    It occured about 4 years ago on 4th of July weekend. My physician prescribed to me some Biaxin for some Bronchitis that I had. I took the first dosage on friday night. On Saturday morning I woke up with some blisters in the mouth. I really did not think much of it because I was not in a great deal of pain. And as far as I was concerned I was not allergic to any antibiotics. I continued with the dosage throughout the day. By Sunday my mouth was full of sores all over the place. At this point I stopped taking the medication because I knew that it was causing my body to react this way. It continued to get worse for another day or so. It got to the point where I had blisters inside the mouth from the throat all the way to my lips. I could not eat for about 4 days because the pain caused by swallowing was just unbearable. Even drinking water was a real strain. I almost felt as though someone had taken a flame to my mouth. Since it was a holiday weekend I was not able to see my doctor until tuesday. For the two days that I had to wait until I saw my doctor, the only thing that was able to sooth my mouth was some lukewarm water. By the time I did see my doctor my mouth looked like something out of a horror film. My lips, which are already pretty full, where swollen to about twice their normal size, and my throat hurt beyond belief (strep throat has nothing on this). Ever since then I do suffer from a little bit of eczema. Mainly in the arms during the spring-time allergy season. Other than that, everything is fine. Both my pharmacist and my physician know how bad I could get. Thanks for reading. Sincerely Jorge

Name:: Paula Evans       

Story::    My name is Paula Evans and I had Stevens Johnson-TENS. I have just celebrated my 44th birthday. In looking back I had it for several months before I finally crashed on June 23rd, 2002. I had a sinus infection from October 2001 through June. I had caught a staff infection when I had sinus surgery and it just wouldn't go away. Two weeks before the fatal day my primary care physician put me on ketaconozole to help fight off the yeast that had taken over my body from the antibiotic Avalox. These two drugs just didn't mix well. I went to the emergency room the three previous days and they said I was just having a bad case of the hives- but I knew in my heart that there was something drastically wrong. Unfortunately no one listened. In the early morning of the 23rd my husband woke up and saw that my face was covered with blisters and that I was delirious. He took me to the emergency room and a nurse said that she had seen this 10 years previously and she thought that it was SJ. I was then taken to the University of Denver Burn Trauma Unit where they saved my life. I was burned over 78% of my body and all my mucous membranes inside. I was in a drug induced coma for three weeks before I was able to be taken off of the respirator. Waking up and not knowing or really being able to grasp what had happened still haunts me today. I was one of the lucky ones as am not blind and I have all of toes and fingers. It has changed my life and my families life. I hope that one day I will be able to get over the anger at what happened. I wish the medical community was more in tune to this syndrome so that another person wouldn't have to experience what I have.

Name:: Brad "Red" Glover       

Story::    In September 2002, I had to leave work early. Upon arriving home my temperature was 104 and was experiencing chills. My wife took me to our doctors, who told me to go directly to the hospital. Apparently I was already in shock as I didn't remember seeing our physician. The hospital admitted me immediatelllly. Unfortunately, it was three days before a dermatologist diagnosed SJS With 2nd degree burns on the bottom of my feet, groin, mouth, lips, throat, anus, palms, and a rash on my back and top of my arms, the doctor immediately prescribed antibiotics and 60mg of steroids. I am a white male, age 56. My normal weight is 135 lbs. I left hospital in two weeks weighing 105 lbs. Within 2 months my weight returned to normal and I was able to return to work. My health has always been great except for a couple broken bones and a hernia operation. During my conversation with the dermatologist, he indicated it may have been an allergic reaction to asprin or possibly the lumber we were using at work. The wood decking is called "Ipe" and is imported from South America. Since it had been raining all day, my shoes were saturated with the water/saw dust material. The liquid from the wood ended up on most of the areas where I burned. Ipe wood, according to information on the Internet, is an extreme irritant to the lungs and skin. Dust masks and eye protection are recommended. Since there is no safe way to figure out what caused my case of SJS, I don't take aspirin of work with Ipe wood anymore. I am still having what feels like raw gums, mouth and lips. On the good side, either the steroids or SJS corrected my near sightedness. Our hearts and sympathy go out to those of you and your families that have experienced SJS