Name:: Jane       

Story::    I am 19 years old and after 4 weeks in the hospital I was released last Thursday, August 29th 2002. I was diagnosed with TEN Syndrome. It started with a few days of high fever. Then one morning I woke up with a rash on my chest and swollen eyes and lips. One evening when Tylenol couldn’t brake my 104 fever, I was rushed to the ER. They pumped a steroid into me which did nothing for my swelling. I stayed there overnight and no diagnosis was made. The next day, many doctors saw me and each had a separate opinion, whether it be chicken pox or poison ivy, until finally a dermatologist looked at me and said that I must be transferred to the closest burn unit. By that time, my body had begun to blister practically everywhere. That evening I was transferred to a different hospital to their ICU. I spent one night there and my condition worsened until finally I was transferred to the burn unit of that hospital. In the burn unit, I was taken to what they call a “tank room” or a place where they shower you. My skin was cleaned off and treated with dressings almost daily. The first two weeks are a blur. I was put on a constant drip of morphine and don’t remember much. By the third week in the hospital, I was able to drink juice and soup. My feeding tube was taken out and my mother would feed me as much soup as I can take. Eventually I started walking and by the 4th week, I was released from the hospital. I have been home for exactly a week. My skin is dry and peeling off. My lips are still bleeding but not as bad as they were. I now eat soft food, not just liquid. My eyes are dry and I am using drops. My nails and toenails are falling off. The doctors at the hospital and the specialists that I have visited have all told me that everything will heal but with time. So far I see unbelievable improvements in all areas. Being home is definitely better then in the hospital but it is essential for a patient diagnosed with SJS/TEN to be put in the burn unit if their case involves a lot of skin loss. I lost more than 60% of the epidermal layer but new skin is always better then old :)

My prayers go out to the families that must go through this. The cause of my case is unknown. I am however allergic to many medications though I was not taking any at the time. I just wish there was more information and familiarity with this disease. It sounds as if it is not a rare as they say it is. My best to all.

Name:: krystina       

Story::    I was prescribed batrum for a sinus infection. The pills were too big for me to swallow, so occasionally i would cough them back up, or skip the dose entirely--if my mom wasnt looking. i just couldnt figure out what it was about the medicine--i just didnt like it. i felt inexplicably 'odd' after taking it. a few days later i began having high fevers, no balance and slight delerium. I was in bed for days and my condition grew worse--my mom took me into the doctors. I was severely dehydrated, had swollen lymph nodes all over, and had a very very low white blood cell count. i was rushed in an ambulence to a local childrens hospital where test after test was run on me. strangely enough, i had no rash. the doctors thought i had everything from cancer to leukemia. eventually (quite long after i had taken the medication) a rash appeared. it looked harmless at first but soon went from red to purple to black and it was thoughout my entire body. it literally felt and looked like i had been severely burned from head to toe. this clued the doctors in to what was going on. my feet were humoungous and my ears were swollen. my tongue and mouth seemed swollen too. i turned out allright a few months later. i just thought id include my story here along with all these others--although i can't help but noticing that everyone else seemed to experiance the rash symptom much much sooner than i did. perhaps its becuase i had skipped so many doses when my mom wasnt looking. ironically enough, i beleive that may have saved me. god-bless everyone and their families who gets this allergic reaction & i pray for your recoveries

Name:: Sonny       

Story::    my wife had contracted the disease after taking celebrex,ciprobay and tromadol.do you support victims as far as the philippines? if yes my name is Mr.Sonny j. Union. i live in manila Philippines and phone is +6326403340 and +639185260099 .hope youll reply yours, sonny j. union

Name:: Tiffany Slusher       

Story::    My name is Tiffany and I have had SJS twice. Once when I was 17 and again two years ago. The first time was very mild and was mistaken for the measles. It only covered about 10% of my body and I did not seem affected by it after recovery. The second time however was not mild at all. It covered 95% of my body. I was misdiagnosed this time with contact dermititis, this at an ER!! Finally after 3 days of horrible pain I went to a med clinic just around the corner from me. The doctor said it was SJS. Induced by either penicillin or an antibiotic I was taking for for a wisdom tooth infection. I was also taking the highest alotted dosage of Advil. Since then my health has not been the same. I was in nearly perfect health before. I rarely saw a doctor. Now I suffer from arthritis, tendonitis, and unexplained nerve damage in my wrist w/ muscle deteriation. As well as fatigue,insomnia and overall joint stiffness. I am not sure if these symptoms are SJS related but I feel as if they are. I would like to hear from anyone who has had unexplained ailments and thinks it may be SJS related. Thank you SJS Foundation!!

Name:: Nigel Hill       

Story::    I was about 30 (1997) when I came down with SJS, at first I thought it was just a tough cough and cold that was proving hard to shake, however when my eyes started to get sore and blisters started to appear in my mouth and throat I knew that there was something not quite right so I deceided to go to the doctors the next day.I couldn't sleep that night as the blisters in my mouth and throat had started to fill with puss and blisters had started to form in my eyes and nose.The doctor was convinced that I had contracted HIV, after 20 mins I convinced him that I was not gay and did not take drugs intravienously he sent me directly to hospital where I promtly collapsed in the admissions department.It took 4 doctors and 20 hours befor they worked out what was wrong, I then spent 2 weeks in hospital where I was put on the maximum dosage of steriods for my body wieght, which plunged from just over 10 stone to 7 1/2.Close freinds told me later that they found it very distressing coming to see me as they really thought that I was going to die mainly because of the way I looked.Eventually I made a full recovery but was not given a clear reason why I had come down with SJS and if it was likely to re-occur, I found there was very little information available at the time and am still looking

Name:: Mary Jo       

Story::    To share my story of SJS? Well put it this way do you have a couple days? Or maybe a lifetime? I am not being sarcastic in any way at all. It happened 2 yrs ago and My family and I have suffered from this illness ever since. My oldest son started out with a few blisters on and in his mouth, by the end of a 24 hour time period even though I had my son to the doc 3 time prior to him being admitted to our local hospital in our home town, why was he addmitted well the doc told me that my son had an extreme case of the chicken pox. He was in the hospital for 3 nights and 4 days while my son was 11 yrs old and could not swallow his spit let alone his meds (tegretal) they the local doc started IV and gave the med to Billy through the IV. by the end of the 4 days here in a loc hosp I watched my sons back slide off on to the floor, this is when Billy was taken to Regions Hosp in ST. Paul Mn. he was on the burn unit there for 2 mths with an extreme case of a desiese I had never heard of in my 30 yrs of life hope was shallow for Billy and was not given much hope. On Thanksgiving 2 yr ago Billy was taken in to surgery and the doc removed 8 layers of skin from head to ankle 95% of Billys body from the inside out were effected with the 3rd degree burns caused by an illergec reaction to a sulfa med. Amazing enough my son is a survivor of this deisese. he has dry eye syndrome and can not sweat because his skin grew back with no pores. I am thankful that Billy does not need eye surg. but he has had internal damages in the last yr. lungs are weak kidneys have not been working properly and Billy has a had time keeping food down. We are lost at times. This is a horrible thing only death could be worse. I could go on but I am not out there to feel sorry my son is a lucky SJS survivor for he is alive and I thank God for that. If any one ever wants to talk to me about this please email me with the head line saying SJS. God bless you for coming to this sight. Sincerely Mary Jo (Billys family)

Name:: Elizabeth Rose       

Story::    When I was 3 years old I came down with SJS. It was in 1965 they called it Steven Johnson Disease. There was no cure or help at that time. Childerns hospital in Los Angeles is where I was for several weeks. I lost my eye sight and I was burned down my throat and could not speak. My mother had the pastor come in because they thought I would not live. But as quick as it came on it went away. I only had two small scars one on my thigh and one on my chest. the hospital sent in a Lab to check my parents home for the cause and could not find one. To this day I do not what caused it. I have never suffered any effects from SJS. I have had 3 children that were healthy and I am healthy. It was not until now that I heard about this wed site and was able to get more info on it. Thank You Elizabeth Rose

Name:: melanie edens       

Story::    My son Sam, seven years old,developed SJS after taking Children's Motrin for a few days for a fever and sore throat. After seeing our pediatrician, we were sent home and told that the "stomatitis" (mouth lesions) and "conjunctivitis" (severely red eyes) would clear up, that my son had pneumonia and would be treated by antibiotics. He became much sicker over the next few days; I was giving him the Motrin for fever and the antibiotic Augmentin. I finally took him to the Phoenix Children's Hospital emergency room, something I should have done immediately. The wonderful medical staff there new it was SJS almost upon Sam's admission, and they were exceedingly kind and helpful. Sam got much sicker as the disease progressed. He had horrible mouth lesions, and lesions throughout his urethra. The doctors at PCH said that mycoplasma pneumonia was the trigger, although he had the sore throat symptons within a day of starting the Children's Motrin. It's difficult to say what the trigger was. We are very lucky that Sam healed so well; he has dry eyes but seems to be fine otherwise. SJS is a horrible nightmare; we spent 9 days in the hospital, 7 on the picu, and my heart and prayers go out to other parents and their children who experience this devastating illness.

Name:: kathleen lee       

Story::    My mother was 3 years old in 1940 when she contracted scarlet fever.There was no penicillin at that time, so she was given sulpha.As a result she developed SJS. She has scars all over, but the worst thing was scar tissue formed underneath her eyelids causing her eyelashes to grow into her eyes,and as a result over the years she has all but lost her sight.I never knew that there was a name for this curse, until about 5 years ago. About a week ago she was stung by a yellow jacket, and was given a steroid shot.She has now regained some sight in one eye.She will now be taking steroids for awhile. but she has developed a cataract in the eye and will have to have surgery for that. I was wondering if she would be a candidate for the corrective lens?

Name:: Stephen Wilcox       

Story::    Hello My name is Stephen Wilcox,I am a 37 year old white male.I have suffered from a bout with SJS.I just found your site wish that I had found it 2 years ago,when I had my bout with it.I too was told that it was extremely rare and would never meet anybody who had it.The doctors all seemed to play it off but I could tell by the looks on there faces and the jaws hanging off thier chests told me they where lieing to me.

Anyway here is my story.In july of 2000 I had an automobile accident which was pretty severe for me I was in small 2 seater type car and had to be cut out of it,I had a concussion and had suffered a minor back injury they told me did not feel like it though 2 disks with compression fracturs while they where taking me out of the car and beginning treatment i had a siezure.The battle which ensued was hard on the medical personel so i was told.While I was in the hospital for 5 days.I was exrayed ct scanned and eeg'd till i thought i was gonna die.I have no symptoms of being epileptic perhaps it was brought on by the trauma of the accident.I went to specialist for nuerology and was perscribed anti convulsents the first 2 i took made me break out in light skin rash near the lower forearms and wrists of both hands.I was given a 3rd depekote then I finally got into see an orthropod.for my back injury now this is like 8 days after i got out of the hospital which I was there for 5 days after the accident.Well I did not want to take a n arcotic as i live alone and did not want to be doped up,so I asked the doc for anything that would not make me sleepy he came up with naprycyn so i began that,by the time i took the third pill on the 2nd day my eyes where swollen shut and my face was bloated and i had blistering of the lips I read the paperwork that came with both meds and realized that both could cause the affects I was suffering.The blisters got worse and spread to my toung and cheeks and gums my mouth was like 2nd degree burns all on the inside my lips would bleed and the skin fall of at a touch.

I went to the emergency room after the 5th day like this they told me I had conjuctivitis,yeah right I have had pink eye in my life before and it was nothing like this.I told them I thougt I was haveing an allergic reaction,and they laughed at me and asked me if I was a doctor.I told them no they mocked me some more and said so you think your a doctor ,they fool nurses only looked at my eyes when I opend my mouth and the blood poured of my lips I said is this pink eye?I thought the nurse was gonna faint she ran out of the room and came back a little while later and told me I was gonna have to see a specialist he was not due for 2 more hours or midnight,Ihad allready been in the er for 3.5 hours.Now bear in mind, I am suffering from SJS and have a mild fracture of 2 vertabrea and not taking pain medication and they want me to sit in those crappy little chairs for 2 more hours?I walked out and got into see my orthropod the next day,I have never seen that much fear in a doctors eyes before when he saw me.He wanted to admit me but called some other doctors and they said no.They did set me up to see a skin specialist the next day he listend to my story and went to a medical book and asked what kind of meds i took.I told him the nsaid and the anti convulsents.He called it SjS right away and perscribed me steroids on a taper dose 5mg tabs taken twice a day starting with 6 and ending with the final 1.It worked I recovered fully and never got to be as bad as some of the people I have seen here in this web site.I did not eat for 9 days if it was not for gator aid and an efervescent vitamin c suppliment with electrolytes called emergen C I would have died I think that kept me alive while I could not take anything else.This is a horrible reaction and should be made more known to the public.It is a shame the medical community would rather sell drugs than make you well.The hippocratic oath is to "first do no harm" how could giving pills and meds which react like this be doing no harm Hell i guess One in a million ain't bad they need to change there oath to read "Its okay to do a Little Harm".I was also surprised to see that the drugs that cause it like the siezure and nsaids are among the biggest offenders and I was taking both I am so glad I had the presence of mind to stopp the meds at the first sign of any discomfort.I wish more people would do this.It seems that most of the worst cases the people kept taking the drug after the symptoms appeared and the doctors did not recognize it and they give you more drugs to offset the pain and discomfort of the first drugs.??????????????I really question that.Well I should not rant and rave here about the Medical establisment of America this is just for the story of the SJS.I am thankfull you are here and may the Good Lord richly bless you and all your endevors Thank you Stephen Wilcox

Name:: Terri Moore       

Story::    After looking at your website, I have never felt so incredible fortunate! I am currently recovering from a case of SJS, probably from Skelaxin, a new muscle relaxer. I started reacting within taking two doses of the drug. Having been exposed to shingles, I wasn't sure if I possibly had that or chicken pox. I stopped taking the Skelaxin. My hands started swelling, burning, and itching and then the target lesions started showing up. I went to the doctor and was diagnosed with a probable drug reaction and started Allegra and Medrol. I was also having extreme chest pain at the time. I started doing my own research and found a description of erythema multiforme in the Merck Manual of Medical Information. By the next evening, I recognized that I was starting to have lesions in my esophagus, eyes, and lips and went to the ER. I told the doctors what I expected and was started on high doses of Decadron. Within, 24 hours the skin lesions started to subside, within 48 hours they were nearly gone. I still had the chest pain from the esophageal lesions, especially when the steriods would begin to wear off. I was discharged on oral steriods. I was amazed at the lack of knowledge on the part of the medical professionals. I clearly knew more about this disorder than anyone else I dealt with. I do however credit the ER doctor with listening to me and starting the steriods immediately. I believe that the IV steriods stopped the SJS at a very early point and that I am incredibly lucky! The doctor who discharged me gave me a prescription for 30 mg of Prednisone every 12 hours, but within 8 hours of coming off of the IV steroids, I was having trouble breathing. It has been a week and a half since all of this started, and I am now down to 25 mg every 12 hours, but can still feel tightness in my chest at times. From my understanding, since several mucous systems were involved, this would be considered SJS rather than erythema multiforme minor. But I haven't come across any other cases which were similar, with mucous systems involved, but being caught very early and treated with high dose steroids. I am trying to find out if there is any information available on the probability of reoccurrence in a case like this. If you have any information, I'd appreciate it! If you think my story would be helpful in any way, please feel free to use it. Thanks! Terri Moore, CD, CLD Babies By Nature Atlanta, Georgia

Name:: claudia bojaca       

Story::    I' m from Colombia and i dont write in english. My name is claudia bojca and I am of Bogota Colombia. My father was diagnosed with the syndrome of stevens johnson after a craneotomía for the extraction of a gliobastoma multiforme after a month of using tegretol to treat the possible convulsions and upon to have log on a processing of radioterapia. June 25, 2002 operated it and August 1 it hospitalized with two symptoms, the mucosas seriously affected in the mouth and the affection the pield and all the body with a bud that went itself transforming but that in 8 days yielded. The mouth delayed so much more in healing completely. A month later when by a conjuntivitis formulated it (not itself which) an antibiotic returned the affection in the skin but this more severe time and the mouth but besides the conjuntivitis. It hospitalization September 9 in the clinic Reign Sofía where services are lending it. The doctors already have given up because the affection of the mucosas and does not yield, that of the skin already exceeded, already moved totally and lso eyes has them very affected almost does not open them and not we know if upon opening them sees or not therefore not they have practiced an exámen to the eyes. The last week has shown something of mejoría but what we are doing is to utilize medicine alternative. Calendula to heal, aloe (or sábila) for hidratar) manzanilla for the eyes, something of propóleo for the endless phlegms and all with water and xilocaina to avoid him pain. The a month ago is being fed for probes and permanently has morfina for mitigar the pain. If you know another processing to improve the mucosas and the eyes we would thank them their information. I will gather better the informtion the medications that were given to see which could be the cause of the SJS, but we believe that the principle cause is the tegretol. Thank you so much for your cooperation Claudia Bojaca J

Name:: Jeffrey M. Kravitz       
Story::    I guess my story begins with a little background. I am a 51 Year old male diagnoed with syncopal episodes, cardiomyopathy, diabetes, asthma, etc. While in the doctors offfice, I suffered a Grand Mal seizure. I was admitted and placed on Dilantin. After a period of several weeks I started to see swelling of my face and mouth. (Similar to a drug reaction to Bactrim (Sulfa drugs). I went to the ER with my wife and the released me to go home and don't worry. The next day we went back and my eyes, throat, and breathing were now involved. They kept me, and for the next three days argued what I had, and what to do. Meanwhile MY fever went to 105 -107 deegrees and my wife was told I would die shortly. The lesions where all over my body, black and deep purplish. My eyes were losed shut. I was delusional. Liver and kidneys were beginning to fail. I was naturally put in ICU as soon as the fever elevated. Finally, a dermatoligist suggested this was SJS, and they should begin immediately bein giving me a drug used with kidney failure as well as an assortment of antibiotics and other measures used thru IV's. I required several blood transfusions. The catheter was not removed daily as recommended and tested, leaving the genitile area with numerous sores. To day I still suffer effects to my brain which was "fried" and still have visible red areas where the lessions were located. My wife wass brave thru this ordeal, but she no longer found me sexually pleasing because of the site. We are just beginning to make head way in our relationship. If not for her strong will to make me fight, and the numerous prayers she said for me. My 3 young children did not get to see me for over a month and a half. My therapy is still on going after the start of SJS 12/31/2001 thru hospitalizaton from 1/3/2002 thru 2/16/2002. I have been left with some "slow" brain function as well as other reminders. God Bless all those who have contracted these allergic reactions, and the loved ones who care and pray for them.

Name:: shelly       

Story::    My husband was diagnosed with Chronic Mylogenic Leukemia in November 2001, just after we returned from our honeymoon. After finding a suitable unrelated donor (as none of his three brothers were a match), he underwent a Bone Marrow Transplant in July 2002. Mario came through his transplant marvelously and was ready to come home the beginning of August 2002 when he developed a rash and fever which the doctors said was a graft-vs-host reaction which is to be expected in transplant patients. He was treated with steroids and antihistamines and his rash cleared up within a few hours. A few days later, August 8 2002 Mario was released from the hospital, and given a lot of medications to take because of the transplant. One of them was Septra- a sulpha based anti-biotic given to bone marrow transplant patients three times a week to prevent PCP Pneumonia. Mario would have taken his first pill August 9th. On the 10th he woke up feeling crappy, but had not taken his antihistamine the night before so we figured his original rash was coming back. Sunday morning (th 11th) I awoke to find my husband covered in small blisters shivering in bed with a fever, and unable to stand anyone or thing touching him. I brought him back into the hospital where they figured he had a severe graft-vs-host reaction. Turns out it was a reaction to the anti-biotic. I remember Mario reading the health watch reminder that said in rare instances can produce a blistering sometimes fatal skin disease called stevens-johnson syndrome and saying "listen to this, could you imagine"! Mario was treated in the ICU for 3.5 weeks, he endured two bacterial infections, the first one almost killed him, the second one caused a pneumonia and Mario passed away September 6, 2002. I gave birth to our son September 13, 2002 and am looking for information on heredity and drugs known to cause SJS, as everything I've read says it is gentic and blood relations have a greater chance of developing SJS. I can not imagine anyone having to go through that, and need to protect my son. If anyone has any information please email me at ms.pavan@mountaincable.net

Name:: Annie Lavoie       

Story::    My 3 year old daugther was first diagnosised with SJS last year. She developed a common cold and I gave her OTC medication she took this medication for 1 week and then all of the sudden she developed blisteres in her mouth. I was in ER 3 times and they couldn't diagnosised her until I went to her GP and he finally diagnosis her with SJS. Samething happened this year. She has pneumonia, was not on any medication, she develped a rash that looked like hives. Went to the Dr's and they said that she probably has an allergic reaction from the pneumonia. Dr. gave her Zithromax for the pneumonia and Benadryl for the "allergy". Again I had to go to the Hospital because he "hives" were getting worse spreading from head to toes. Lips were full of blister and she even had a rash in her vagina. I am still quite confused by this syndrome. Will it stay in her system forever? Since it is a syndrome, does it always come back and never go away? I don't know anymore and I am scared for my daughter please help.

Name:: Laurel Conrad       

Story::    In 1960 when I was 4, I developed SJS/Tens/Septicemia due to Kynex (sulfa). I was hospitalized for 21 days. I lost all my hair, fingernails, and blistered and bled when touched. I have been told I am one of the longest living survivors. I was one of the first few SJS cases to be treated as a burn victim. I survived and was lucky! I had no catastrophic eye, airway, female, or gut problems because I had great Docs and nurses back then. I do have severe sleep apnea, hiatul hernia, very low blood pressure, low normal body temperature, few sweat or oil glands survived, my skin sunburns extremely fast, and my skin breaks down quickly when very dry or with continuous contact pressure from just about anything. I am totally non-asthmatic, do not get hay fever, and have very few other IgE mediated allergies. My siblings and I are strep immune. Two of us also have children that are. Three generations on both sides of my family have reacted to Sulfa drugs. I was lucky when I was 4 - but as I have entered middle age the luck is running out! I have severe degenerative disk disease and am slowly losing mobility and function. Accepted causes for my toasted disks are congenital or childhood inflammatory disk infection. Well, no one - on any side of the family - has disk problems and I never had an inflammatory disk infection. So my money is on the SJS causing a great chunk of damage when I was a child. The rest of the damage is from chronic inflammatory reactions I have to certain flowers, pine and ANY product made from them, including room fresheners, perfumes, colognes, teas, foods, etc. From flowers that smell, pine, perfumes and colognes and other scented products; I get blisters in my nose, mouth, throat, eyes, and personal parts. I have had severe gut reactions, an enlarged uterus, and spontaneous bruising as the vessels react and blister. I have been skin tested and proven reactive to many popular scents. The Doctor stopped testing because local, contact reactions to 1/100 (agent/sterile water) cuts started triggering full systemic responses (SJS type). I also react to many antibiotics, many other meds, and latex. Except for a Tylenol once or twice a year and TUMS by the case, I NEVER takes over-the-counter medication of any kind, natural or otherwise! I may occasionally take a generic, children’s, multivitamin. I do take Zyrtec, Accolate, Vioxx, Zantac and Phentermine daily. They have kept me out of the emergency room for 2 or 3 years but not stopped any of the collateral damage from reactions. The Zyrtec, Accolate, and Vioxx are the best combination we could find to suppress my IgA mediated, SJS type reactions. The Zantac controls acid reflux. The Phentermine increases my metabolism and blood pressure so I clear toxins quicker and don't get dizzy every time I stand up. For pain management I can take morphine or Fentenyl patch. The most asked question I get is: "How do you go shopping?" The answer is: "I don't!" (Thank God for Daughters, Amazon, and Simon Delivers!) My personal philosophy after 42 years of all this: If I can pee, poop, and think without help - it’s ok for somebody else to do or help with the rest! In the mean time: I do what I can, more than I'm supposed to, and cause no harm to rest of the world.

Name:: Dave P. Constantino       

Story::    This is my story: I’m a Filipino, 33 years of age. I’m one of the few who has this rare SJS disorder. It was on July 21st, I thought i was having a sore eyes. Soon my mouth begun to have blisters as if im chewing some pebbles or broken glass. That night i begun to chill and having fever and cough. The next day i told my wife and aunt about this and ask them to go with me at the nearest clinic. My whole lips became black and my eyes are irritated, The doctor had no idea about my illness, and suggest that i should be confined immediately. Soon i had a difficulty in breathing and my body felt weak. We’ve been to two hospitals, after being sent away from two emergency rooms, the third hospital admitted me, I pray the Lord (Help me, this must be it!). That afternoon the doctor diagnose me and i heard the conversation of my aunt and the doctor that i have a STEVEN-JOHNSON SYNDROME. I’m scared and soon thinking of my kids, i felt sadness and begun to pray, i had never heard of this disease and knew absolutely nothing about it. It seems i had an allergic reaction to the anti-biotic i had taken. Soon the nurses came and put dextrose, oxygen & ECG at me. The head doctor at the emergency assigned four more doctors, One for internal, dermatologist, infectious and optamologist. They took blood samples on my arms many times to find out were i got this disease. I told my wife to bring me to a ward cause it’s cheaper but the doctor insist to bring me to a private room so i will be isolated. By then, blisters had started forming on my face, chest, lips, neck, arms, soon my whole body itself from head to toe. It was unbearable pain, it was like my skin was burning, I could see the look of disgust on the face of my aunt and my wife and the visitors for what was happening to me. Everyone who saw me could not believe the way i looked like. Even my kids when they visit me could not recognized me as if i was turned into a monster. Soon my eyes begun to shut and very difficult to see. I could not eat anything, could hardly drink, my eyes were in great pain and i could not see for many days. My energy level dropped, I was sleeping all day, and everytime i woke up i had to literally tear my lips bit by bit (through a sealed mouth) Each night they would bleed and scab together, it was cracked and bleeding. My mouth and throat were full of lesions, Even a small swallow of mineral water was terribly painful. I have to gurgle every minute by using mixed sodium chloride and bactidol to remove small skin particles that comes from the blister on my throat. Urinating became indescribably painful. My wife became my nurse whose responsible of putting eyedrops, rubbing phenolated calamine lotion and vandol on blisters all over my body and oitment for my fingers three times a day. When the skin peeling normally, and my Internal organs kept working, my doctors allows me to go home after spending 16 painful days at the hospitals. 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 was very close to dying but had both parents, aunts & uncle, mother in law, my wife, relatives and friends support and pray all the way thoroughly they kept praying and praying. My fingernails indented, bubbled and weekend. Later the whole nails broke off and i lost a lot of hair. I am expected to make a full recovery with no permanent scarring and my eyesight and mucous membranes of my mouth and nose are expected to return to normal within a few more months. I hope that i will get some energy back and maybe in a few weeks food will taste better. I’m not sure what drugs caused my SJS but for sure i’ll be very extra careful in taking drugs, maybe herbal medicine can help a lot. I know everything happens for a reason and i have faith in God and the prayers are helping immensely. I pray for those who have suffered much more than i that our Lord will give them comfort like what he did to me. Thanks Be the LORD GOD Almighty

Name:: Lenore Atwood       

Story::    I got SJS from taking tetracycline. It occured THREE TIMES!!! My involvement included all the mucous membranes but not elsewhere. Needless-to-say on each occasion I was seen by a number of doctors who diagnosed everything from shingles to strep throat. I was about 40 years old on the first occasion and 45 and 50 on the other two. I was finally diagnosed when a customer who was an immunologist called about an order. I told him I doubted that I could fill it because I expected to be dead in the very near future. I explained my symptoms. He got me to a doctor who determined immediately my disease.

Name:: Blake Cook       

Story::    I'm a little sketchy on all the details, as this was some time ago. I'm in the process of learning more. When I was 6 years old (I'm 30 now), my family had returned from a camping trip. My sister, Stacy who was 8 became fairly ill. She was diagnosed with SJS. I remember visiting her in the University of Utah Burns Center. She had the equivalent of second-degree burns over the majority of her body. Within six months, she was completely blind. She was being treated agressively with steroids, as was evident by the rapid and pronounced weight gain. She died at the age of 10. I do not know if a drug interaction was responsible or not. It's not a subject my parents are willing to discuss.

Name:: Lindsay Estacio       

Story::    Lamictal…treasure or terror? Hi My name is Lindsay Estacio. I was diagnosed with Steven's Johnson Syndrome ( or I n my case….TENS, because it was so sever.. Toxic Epidermal Neorologizal syndrome) just two short months ago... August 18th of 2002. I was just 14 years old(and still currently am.) It started with very bad feminine itching puffy eyes, and blisters in the mouth that would bleed from a soft touch on them. I was at the beach with a friend when this happened. It was very scary... My friend's mother took me to a clinic down at the beach to get me all checked out and to make sure I would be fine. So I went to the clinic the doctor gave me a good check-up and stated that it was viral...and would simply have to run its course of 3-5 days...He said there was no medication for it but that i would heal up soon. When my mother had phoned the clinic from 5 hours away in Pennsylvania she repeatedly asked the doctor if he was sure that it had nothing to do with the new medicine I had been on for bi polar disorder for about 3 weeks now, and again he reassured her that the medicine had nothing to do with my illness whatsoever. My mother wanted to come pick me upo because she was concerned. But i told her if it just has to run its course im gonna be doing the same thing whether I'm at home or whether I'm here at the beach...that seemed lodgical to my mom since the doctor had told her it was viral... But, later that night i was feeling terrible and i ineeded my mom to come pick me up from the beach because she knew then something was terribly wrong! So, when she picked me up that night from the beach, brought me home and put me into bed... i was moaning and groaning the whole night and simply couldn't sleep.... and i was itching all over I had started to get this bumpy little red rash all over my face which wuickly spread to all other areas of my body. So my mother rushed me to the emergency room.... as i was on the hospital bed the doctor walked in and immediately said to my mom... Steven's Johnson Syndrome...my mom asked what do we do....and the doctor repied....well it has to run its course but it should be better within a week......well a week had passed...and the only thing the doctor was right about was that i did have steven's johnson syndrome...but no it didn't stop. We had been told it would after i stopped the medicine that had caused this...Lamictal. I had gone to 4 different hospitals withink 1 week....the reason for the change in hospitals is because 1 hospital after another said they didn't know how to deal with my situation...so then i had to be flown in a helicopter to the Burn Center....because I was breaking out in full pussed blisters from head to toe in front off their eyes... but the only place that could treat me was the burn center.......because after all the blistering a chemical burn from inside my body came about and now i have 2nd degree burns from head to toe. Doctors had never seen a case as worse as mine. The skin in my lungs was sluffing off to where I oculdn't breathe...so they immediately put me on a venilator for 3 weeks and PAIN medicine in an IV for about a month..I lied in bed for about a month...while my eyes were closed shut to the point where the opthamologist had to come into my hospital room every day and pry them open....they were just about ready to give out.....i had to be wrapped up in tape from head to toe i practically looked lieka mummy...so i was just white tape with a breathing tube coming out of my mouth. This was like going through hell and back. I was at the burn center for 5- 6 weeks... I was released on Sept. 29th and then went home for another 2 weeks...I had been getting horrible chest pain for weeks...so finally one night it got very very bad and i couldn't take it so i went back to the emergency room they did an x-ray and diagnosed me with pnemonia...we are almost certain that i picked this up in hte burn center.....considering all the germs i was around I had 450 cc's of fluid on my lung that they had to have removed with surgery...a chest tube was put in for 4 days. I was so scared...then I was released from that hospital for a week...then 2 weeks later there was a problem in the vaginal area so we went to the doctor and I was diagnosed with the very very rare disorder" Vaginal Stinosis" This is a complete blockaage from scar tissue in the vaginal area...which requires VERY VERY special surgery....the whole tiem I was in the hospital I just prayed to god constantly asking him not to take me yet and get me through everything....I was on the verge of death...and look at me now a few months later i am up on the computer writing about my experience.... i am glad i can share this with others around the world and to make sure before u take any kind of medicine always check with the drug company...the pharmacist...your doctor of course (ours was not trusteworthy) and def. with more than 1 doctor. I have to live with scar tissue on my eyes today which makes them red...and very little... i must get surger to remove the tissue from the eyes there is no guarantee it won't grow back..and i have burns all voer my skin...they will all go away but definitely with time.....lots of it...and i get tired out very easily i must gain back mny stength by attending physical and occupational therapy everyday now until i am better.....I am so thankful that this didn't take my life....because i assure you Steven's Johnson Syndrome is almost like the devil is living inside you. And god forbid that this would ever happen to any one of you out there.....but if this ever does become an issue for you or a family member please remember .....Jesus saves.....look at me.,,,,would u ever think that little girl would come out of this doing gymnastics going baxck to school dancing.....thank you for letting me share this story....and anyone who has any questions or comments or would like to share their own sten's johnson story i encourager you PLEASE PLEASE PLEASE either e-mail me or post on this site I jsut would like to let everyone know so it will never happen to you or child! thanks so much... Lindsay

Name:: Penny       

Story::    In the middle of Feburaury I started having bad stomch aches. My dad took me to the doctor. They diagnosed me with A UTI and put me out of school for the rest of the week. My stomach didn't feel any better so we went back to the doctor. They said I still had the UTI as well as ovarian cysts. They give me more medicine to take with the other medicine I was already taking. I didn't feel any better. A few nights later I woke up in the middle of the night and went to the bathroom to look in the mirror because my face hurt. I had quarter size or larger blisters full of water hanging off my face. I woke Daddy up and he called the ER right away. He knew something was terribly wrong because he has been a paramedic for 18 years and a volunteer fireman for several years and he had never seen blisters like this. The doctor said that since the blisters didn't look like targets that I'd be OK. I didn't get any sleep for the rest of the night. Daddy took me to the ER first thing the next morning (which was March 2nd). As soon as they saw me they admitted me right away under the diagnoes of Stevens Johnson Syndrome. During my stay I developed into TENS with is the samething but affects 100% of the body. I stayed in McDowell hospital for 5 hours. I was on IV treatments with steriods. They transported me to the Winston Salem burn unit. Immediately they stopped the steriod use saying that they have a higher fatility rate with use of steriods. I stayed in the burn unit for about 9 days. I had 3 diffrent machines (I think) hooked up tp me. From volunterring in our local hosopital for several years I knew I wasnt doing good. They told me that I would not be able to make it to my junior prom or my chorus concert or be home for my birthday as well as my sisters birthday. I wasnt gonna let that happen if i could help it. I had a lot of people praying for me and lots of support. so many people come to see me as well as pray for me. After my 9 day stay in Winston-Salem burn unit, my dad and I flew to Shriners Burn Center in Cinncinati, Ohio for further treatment of the eyes. By this time I had missed my cousins birthday and my chorus concert. I was once again told that I miss everything that I was really looking foward to. I stayed in Shriners for three days. I was home on March 12th. I had to seee an eye doctor everyday for a while to watch for effects. I was restricted to driving with glasses before I got sick but now I don't even wear them for anything. None of my doctors could explain. I can God answers prayers and sometimes he gives you more than you ask for. March 15th I went to my junior prom with my boyfriend and my dad. Not many people can say they had 2 dates. March 20th I went back to Cinncinati for my one week check up on my sister's 11th birthday. March 21st I was home on my 17th birthday and to celerate the birth of my new little cousin. God has really been with me and my family. All you gotta do is Pray

Name:: Eloise Martinez       

Story::    I received this email from a friend over the internet. Angeline Angcanan is one of our programmers assigned in Aboitiz. Her brother, Angel, died from Stevens Johnson Syndrome last October 26, 2002. She wants to share her story with us so we can be aware about this deadly syndrome and for us to be cautious of the drugs we are taking.

"In my brother's case, it started with a simple case of diarrhea. Lomotil and Diatabs didnt work for him so he consulted Dr. Balalta of Balalta Clinic in Silang Cavite (Philippines). The doctor prescribed 3 kinds of tablets, one of which was Cotrimoxazole, an antibiotic. (I searched for it in the net and found out that it was the #1 antibiotic that is known to have adverse effects back in 2000). His condition worsened so he consulted another doctor, Dr. Arlene Abad of Estrella Hospital. She prescribed the same set of drugs, but doubled the dosage of Cotrimoxazole, from 800 mg to 1600 mg. After a few days, he had red spots all over his body and had a very high fever. He went back to Dr. Abad and she diagnosed it as measles. He went back to Dr. Balalta to ask for another opinion (Angel had a hunch it wasn't just measles), and Dr Balalta said it really was measles! The doctor noticed that my brother's eyes were yellowish, so he was tested for hepa. The result was negative. When my Mom found out he was negative for hepa, she immediately brought him to the De La Salle University Medical Center in Dasmarinas, Cavite to get a third opinion and have him confined.

It was Tuesday, Oct 22. He was still strong, could walk and think straight, (in fact I was able to talk to him on the phone) but he already had difficulty in defecating (there were blood in his feces),urinating (his urine looked like coke) and in swallowing food (his tonsils were swollen). The doctors said my brother had SJS, a severe allergic reaction to a certain drug he took. It took them some time to finally isolate Cotrimoxazole. Wednesday night, he was already restless and had difficulty in opening his eyes. My mom said he was hallucinating, he was seeing things that weren't there and saying things that were incoherent - like seeing two women at the door, talking about "dancing worms" and pointing upwards and telling them where heaven is. (The old folks in our family believed these hallucinations were actually premonitions.) Thursday afternoon, he couldnt open his eyes, couldn't talk or walk. He was just shouting in pain. He had to be strapped in his bed because he wanted to remove all the tubes connected to his body. He was sent to the ICU that day. Friday morning, my aunt called me up and told me that I have to go home ASAP because my brother's condition was very critical. When I got there, I was shocked at what I saw. He looked like he was badly burned, as in, his skin was peeling all over the body. His stomach looked charred. He had swollen eyes and mouth. (His wife and my mom said his penis was swollen too.) He was already in coma then. We weren't allowed to go inside the room because of his exposed skin. We might cause further infections. It felt like we were just watching him die and we couldn't do a thing. It was almost hopeless. The doctor said my brother had a very slim chance of surviving because his liver totally malfunctioned (That explained the yellowish eyes. His liver only had 2.2% clotting ability - close to nil!).

Saturday morning, I thought he was getting better because his urine's color looked normal, from dark brown to dark orange to yellow. The nurse said it was a good sign because that meant the kidneys were not infected. His blood pressure also improved - from 60/40 to 90/60. So with a little hope in our pockets, my father and I went home to get some sleep and get extra clothes and food for another night in the hospital. When we returned we were greeted by a confused sight - the doctors were already in my brother's room trying to revive him for the fourth time. The doctor asked us if they would continue reviving my brother. She said there's a chance he might live after the next revivals, but he will be a vegetable. Invalid. Twin to a wheelchair. My father instructed the doctor to revive my brother for the last time. Unfortunately, it didn't work. Angel died at 5:35 pm on October 26, (my parent's 26th wedding anniversary. He did not want to be forgotten) of multiple organ failure brought about by the Stevens Johnson Syndrome. A pity. He had so many dreams. He was very young at 23. A big loss as he's the only son. Big loss as he's my only sibling. He never had the chance to be a father. He had been so excited. It's such a painful experience for me and my family to lose him to a disease that could have been treated had it been detected in its early stages. It ruined his body so much that the formalin was rejected, and so we had to bury him as soon as possible. Sorry, If I was not able to inform everyone. Everything went so fast. My father had Angel's body autopsied by the NBI (same as FBI), just in case we'd want to file charges in the future against the doctors who, technically, misdiagnosed my brother. But I convinced them not to anymore because SJS is really a disease that is difficult to diagnose. One more, I don't trust the justice system in the Philippines. We will just spread his story to the media. My Father wants other people to know about this deadly syndrome, for people to be cautious of the drugs they take and for people to be aware of erring doctors. This is why I am sharing my brother's story with you. Who knows, this email may save a life.

Thank you for your prayers, financial and moral support. Please pray aslo for Angel's soon to be born baby boy. May he be healthy and normal. Pray also for my parents and my brother's wife. May we all have the strength to move on. Again, thank you." Anj

Name:: Gary       

Story::    Hello, My story is a bit different than some of the SJS victims, and I guess in many ways I feel lucky that I did not have to go through the severity that some have endured. Yet, my story is rather unique in many ways - I was told by several doctors that the way my case manifested itself was very rare. I was in the USAF at the time and was being treated for chronic cluster headaches. For those that are unfamiliar with cluster headaches, you may want to look at: http://www.clusterheadaches.com I have been treated for these type of headaches since the age of 16 with a variety of medications - and while the type of medications were numberous and varied, it wasn't until I was nearly 30 that I would encounter SJS. During a particularly bad episode of cluster headaches, I was being given medications called Cyproheptadine, Benadril, Indocin and Fiorinal with Codeine. I dont' remember exactly how it happened, but I awoke one morning and felt kind of ill and had a bothersome itch all over. Later that day, my unit was scheduled to be in a practice for a change of command ceremony in which we stood for segments at a time on a parade field at attention. Before I knew what happened, I toppled over on the parade field and was rushed to the hospital. All I can remember in the hospital was hearing voices behind me saying, "we've got to get his blood pressure down" - apparently my blood pressure had soared to 240 over 180. The doctor gave me a shot of some type called Stadol which did lower my blood pressure and a few hours later I was sent home to "rest" and recover. The effects of the Stadol seemed to last many hours and when I fully awoke and realized I had to urinate, that is when I discovered one of the sources of my "itching". I tried to urinate and realized that my penis had large blisters over the complete surface - so bad that I could not urinate - the only possibility was getting into a bath tub of warm water to ease the pain. To be honest, I was scared to death. I had no idea what could have caused this to happen and kept thinking that even though I was not a sexually promiscuous individual, perhaps I had contracted some type of sexually transmitted disease. I also noticed that I had pain in my mouth and upon inspection, noticed a very white looking type of growth growing around the gumline - upper and lower. That's also when I noticed a large white ring about the size of a half dollar in the palm of my hand. I became very concerned and immediately drove to a nearby library and did some research - the only thing I could find that perhaps resembled what I had was syphllis. Keep in mind, this was also about the time that AIDS was really coming into public awareness - I didn't rule out that possibility either. I went home fearing the worst was not really sure how to proceed. By the next morning, some of the blisters on my penis had gotten bigger, some of them had also ruptured, and I definately felt very ill - ill enough to swallow my pride and call the base hospital to ask for advice. I don't know how I stood getting dressed - I soon discovered that wearing undershorts was a no no that merely aggravated my pain. But nonetheless, there I was in front of a female care provide - a fresh out of officers school young female lieutenant. Here is where my nightmare of sorts begins - I was already considered a very shy person and to have to drop trousers in front of this lady was not easy - probably more difficult for her than I, but she took one look, nearly gagged and said, "I think I better get a doctor to look at this." In came a doctor who immediately became concerned and made arrangements to have me medivac'd to Wilford Hall in Texas - the place they send all the severe cases. I asked him to be honest - "doc, please tell me I don't have AIDS." He said, "I did two tours in Viet Nam and saw cases of the clap that looked like the common cold compared to what you have - but I'm pretty sure it's not AIDS." At least that was some kind of comfort but still left me feeling uneasy. Instead of sending me to Texas, the doctors got together and decided to send me to a urologist who ruled out any type of sexually transmitted disease. In turn, I was referred to a dermatologist who reported I had Erythema Multiforme or Stevens Johnsom Syndrome - possible allergic allergy drug eruption. Admitted to the hospital where I would stay for nearly a month - treated with a tapered program of prednisone and daily applications of hydrocortisone 1% mycolog cream. Of course all of the medications I had been taking were discontinued and I showed slow improvement on a daily basis. Eventually I recovered and the official transcript was that I had SJS and should avoid any of the drugs I previously listed plus any sulfa based drugs as well. While things appeared to be normal, I began to realize that my organ did not seem to be as sensitive as it was previously even though it looked normal and did not have any visible signs of scarring. But to make matters worse, I could not help but think about the situation and realized it was not something that I could easily talk to anyone about - let alone a woman. It took me nearly fifteen years to become comfortable enough to even talk about it. Well, a few years after that first SJS episode, I woke again one morning and experienced nearly identical symptoms. Oddly enough, I had been taking no type of medications - it just happened again without any apparerent reason. Luckily the second round was not nearly severe as the first, but it was just as devastating emotionally as well as physically. So now, 13 years later, I am finally married to a very understanding wife but to be honest, our sex life is not what it could or should be simply because I cannot enjoy sex or achieve orgasm - lack of sensitivity on my part. Too boot, if I try to force the issue, my penis becomes very irritated and red almost as if it is trying to blister again. I just don't know what to do about this and would dearly like to hear from anyone who may have experienced a similar experience. You know, if my arms, feet, toes, fingers or legs would have blistered and ruptured, I could have dealt with that and been able to talk about it easier with others. Sure, it would have been equally as devastating, but to have SJS manifest itself where it did on me - I really feel that it has left some long term effects that I will never overcome. Gary

Name:: LaKita Moffitt       

Story::    I am a 29 year old African American Woman who suffered from SJS in 1988. Like alot of other stories I've read, I was also initially misdiagnosed with the flu. However, after being admitted into the hospital, I was eventually diagnosed correctly and transferred to Kosair Children's Hospital's burn unit. I was in the hospital for about 2 months and my memory of the hospital stay is very faint because I was on morphine during most of my stay. However, as a result of this syndrome, I now have permanent scarring on most of my face, back, chest, and arms. I also lost my fingernails and toenails permanently. It gets hard sometimes to face people because they stare and wonder what happened to my skin. But I hold my head up and say a prayer that God give me strength. My parents have also been very supportive and loving, they were both at my bedside everyday throughout the whole ordeal. This tragedy affected them as well as my younger sister very deeply. But through the power of prayer, all of us made it through. I am glad that I found out about this organization by surfing the web. My prayers go out to each and everyone who has been touched by this terrible syndrome.

Name:: Andrea Jakob       

Story::    Hello, Sorry, my english is not so good. I'm from Germany, 45 years old and I saw our site here. 1997 I had the SJS and it was a horrible time I cannot forget. Also I had the same time a "Mykoplasmenpneumonie". I was 5 weeks at hospital. When I see these photos here, I know that I was not so badly sick, but sick enough. I had it in the mouth, Vagina and to the hands, arms, legs and feet. I tell my story, because I am surprised, as admits the illness is. Here in Germany the physicians did not know 4 days long which for an illness I have. The cause is until today not well-known, only an assumption. I suffer still today from the consequences. I am very sensitive in the mouth and the vagina. But I am well today and am lucky that it is past. I thought, I could never eat again in my life. Best Greetings from Germany (Lake of Constance) Good wishes to all patients. I suffer with them Andrea Jakob