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Name:: Lenore Colon       

Story::    I just took my daughter home today from Westchester Medical Center in Valhala NY. Where she I was told she suffered from a rare case of sjs. We were very lucky but like my entire family no one has ever heard of this. We are not sure exactly what cause this for her. She had been sick for 5 days before we were sent to see a specialist. She started with a few blotches on her face and upper body, we at first thought it was chicken pox looking similar, runny nose, and high fever. By the next day it was very obvious is was not chicken pox. We had taken her to the pediatrician who told us is was a viral rash. By Tuesday my 3 year old is having conversations with bears and other things that aren't even there due her high fever. She was brought back to the doctor where she was sent for blood tests again being told sometimes this is what a viral rash will be, but if nothing shows up in the blood to bring her back every day until the fever brakes. Bring her in the next day with the 3rd doctor who now is thinking kawasaki disease. She sent us to this medical center to see the infectious disease doctor who was only with her maybe 10 minutes and called in dermatologists. They took a skin biopsy and in the mean time they started treatment called imune-globuline. Which would be the treatment of both. She only had to go through 3 treatments because her case was mild and she reacted well to the treatments. I again was extrememly lucky, but more people should know about these type of disorders. I love her doctors, but obviosly they don't know enough about this. Most likely they don't see it much because we aren't in a big city, but since it is seen mostly in children and from many of the medications they are treated with they should have known what it was from the first look. My heart goes out to people who are not so lucky I know what I just went through and can't imagine any worse. Thank you for your time and god bless.

Name:: Mickey       

Story::    My Mother died in 1971 from Stevens Johnson Syndrom. Mom had a drug reaction from a b-12 shot that she gave to her self. She broke out in hives and dad took her to the hospital were mom died 9 days later. They did not know at the time of her death or did not know what to do about it. Moms skin started to peel on the outside of her and so did all of her insides. Mom was put in a vasoline bed and given pain killers and that was about all they could do for mom. She was in so much pain, I don' think that I will ever get over how mom looked at the end of her life. My mom was 47 at the time of her death. About 3 months after moms death the autoppsy report said that she died of Stevens Johnson Syndrome.

Name:: brandon pelinka       

Story::    On July 22nd 2002 I went to a normal doctor and I and some small blisters starting to appear on my shoulders I also had pain in my eyes and my throat hurt like never before. I was told I had 2nd degree sunburn and strep throat.I went home . I woke up the next day with puss in the blister the size of 3/4 of a tennis ball. My eyes felt like they were going to pop out and it was hard to keep them open . I went to the local hospital and found out that I had sjs. I was then transported to the Hennepin county medical center burn unit. I stayed for 17 days and left with very few scars.(lucky).when I arrived the popped the blisters and did a skin biopsy. They found no answers why I had gotten sjs and I'm not allergic to anything. My burns worsened and they covered my upper body my face throat mouth back and a small part of my legs . I had to have a feeding tube a catheder(spelling)and they had to pick out the bllod clots in my eyes for fear of losing my eyesite. my blood platlets fell to a staggering 22. I feel alot better now and am Relieved I escaped with little damage. It was obvisiouly the worst thing I ever went through and I have never quite felt the same since but there is hope and you can make it through.

Name:: ekta mohta       

Story::    hi, i am 18 yrs old and from mumbai, india. i had just come back from my dancing class when i developed high fever. taking the normal aspirin i didnt think abt it much. however the nxt day i started havin red rashes all over my body and i just couldnt stop scratching them. on the 3rd day they started turning purple. my doctor thought that i was having measles. on the fourth day they started turning black. it was awful. seeing my skin turn into huge black blisters. it was also very difficult to open my mouth. i was hospitalised for eight days and given steroids. Today five months later my entire skin has turned into a dull shade of brown. i am taking homeopathy medicines and applying a cream called eloevera. i dont know when will my skin clear up completely. i have even forgotten how they looked before the disease. i still dont know how i got this disease bcoz i had not taken any medicine before. however the worst part is that even my doc didn know what i was getting! how can you confuse measlses with sjs? maybe if i had been admitted earlier my problem wouldnt have gotten this serious.

Name:: Ana       

Story::    My name is Ana and I'm from Costa Rica. I was searching for some info about SJS on the web and I got with this site. My story starts in 1999. I was under a treatment for my left knee, because of an injury that i had the year before when I was a Senior in High School. I was in the second month of a treatment with Azulfidine and one day I started to get sick, I was 17 at that time. At the beginning it was like a really bad cold, then I went to the doctor and he told my dad that it was a trought infection, but my eyes were completly red and my mouth and nose were really puffy... and I felt really bad. That night, I remembered that i woke up several times, beacuse I couldn't breath well and i was really thirsty. My mom called the family doctor and he went to see me at my house in the morning. At the moment he saw me he told my parents that I had SJS, and that my trought was closing... so he started inmediatly with a huge treatment to get me out of danger. He let me stay at home, because he was a fraid of me getting and infection in the hospital, 'cause i was so vulnerable to anything. Of course my parents and my doctor took all the precautions to get me a safe enviroment, and sometimes my mom had a nurse helping with the treatment. I don't remember a lot about how did I look, but i do remember the pain, the color and the blisters that became huge bubbles all over my body, i know that i loose a lot of hair, and weight. I couldn't go out for the next 6 months, and after i had to go to any different kind of doctor to check my eyes, my ears, my trought, my skin, everything. Thank God i don't have any great secuels of SJS, but I have really dry eyes and some scars on them but nothing that couldn't be treated. Right know i have to be carefull with any kind of medication that i have, i can take acetaminophen for the pain and if it is something else, like the flu, i have to call a doctor, but i can't ever take Sulfa again. I'm really lucky to be healthy after SJS, I made trough it and I know that a lot of people can do it too.

Name:: Connie Goniea       

Story::    I did't know of SJS until today. My sister had an allergic reaction to Tegretol around 20 years ago. Her whole body has almost like 3rd degree all over. She was in reverse isolation. She could barely open her mouth to eat. I was so scared I will lose her. The doctor did not explain to me this syndrome. I don't know if he knows it at that time. Thanks GOD, she recovered.

Name:: sondel       

Story::    Friday, February 7 - When I went to the ER after I was assaulted (road rage after fender-bender), I was treated for the broken nose and prescribed Vicodin (Hydrocodone 5/500), Motrin (Ibuprofen 800MG), and Flexeril (Cyclobenzaprine) for pain and swelling. I also noted to the doctors that my throat felt slightly sore. The doctor(s) attributed the sore throat to the blood that I had swallowed from my injuries.
Friday, Saturday, and Sunday - I took Vicodin every 4 hours for the pain of my nose and Motrin every 8 hours for the swelling.
Monday, February 10 - By 2 am Monday morning, my throat was extremely sore. I looked in the mirror and found white spots on my tonsils. I called the Kaiser Advice Nurse at 6 am the same day and got an appointment for 8:30 am. The appointment was to meet with a nurse and do a Strep Throat culture. The culture is supposed to take 24 hours to return results from the lab before antibiotics are issued. When the nurse saw my throat, she immediately met with my regular doctor and had Erythromycin 250MG (antibiotic) prescribed.
By Monday late night I was vomiting and again called the Kaiser Advice Nurse. Because I already had an appointment scheduled for Tuesday morning with an ENT doctor at Kaiser, the advise nurse said to stop taking the Erythromycin and the ENT doctor would be able to prescribe me a different antibiotic.
Tuesday, February 11 – I met with the ENT doctor who confirmed again that my nose was broken and he suggested that in order to correct the nose he would have to manipulate the cartilage in the nose, however, he said this would be extremely painful and that due to the strep throat he suggested to wait three months before having nose surgery to fix the deviated septum. I told him about my reaction to the Erythromycin and he prescribed Cleocin (Clindamycin 150MG) (antibiotic). Along with Phenergan (Promethazine 25MG [anti-nausia] and Xylocaine (Lidocaine) solution [for throat pain].
By late Tuesday night I began developing redness on my face and early Wednesday morning I developed redness and bumps on my neck.
Wednesday, February 12 - I again called Kaiser Advice Nurse on Wednesday morning complaining of redness and bumps on the majority of my body and difficulty breathing and swallowing. In addition, my face was swollen and I had a fever and the nurse advised me to go to the ER immediately.
I arrived at the ER about 6:30 am. Originally, they treated me with Benedryl & a steroid the ER doctor believed I was having an allergic reaction to the antibiotic, Cleocin. After several hours of not responding to treatment, more doctors came in to examine me. It was determined that my Strep throat had progressed to Scarlet Fever. I was prescribed Zithromax 250MG and told me I could take Benedryl for the redness & if any itching and I was sent home.
Thursday, February 13 – By mid-afternoon, my rash was beginning to burn much like that of a severe sunburn therefore, I contacted my general practionar. She prescribed Atarax (Hydroxzine 25MG) [which is a stronger version of Benedryl].
I continued to feel burning over my body. By 10 pm I began developing blisters on my arms and they began oozing. By midnight, I again called the Kaiser Advice Nurse, told her everything that had happened and was happening and she advised me to immediately go to the ER.
Friday, February 14 – I arrived at the Kaiser ER at 12:30 am and was immediately placed in a room. By this time I was writhing in pain from the blisters on my arms. The pain was so bad the only way they could control it was with morphine. After many hours in the ER and many doctors later, I was admitted. The doctors took a biopsy of a blister on my right arm and sent it off to the lab (not the best way to spend Valentines Day!). I was burning from the inside out. My whole body was red, my face was extremely red and swollen, blisters on my arms and legs. My left arm was so swollen I couldn't move it. The nurses had a terrible time tring to insert an IV in me. I was on Morphine for four days and was told I might be moved to the burn unit if my skin sluffed off. I stayed at Kaiser until Monday, February 17. By this time, the rash was subsiding and I was getting my energy back. Tuesday, February 18 - Can you believe it? I woke up with a head cold!!!! (this is not my month!) As of Wednesday, February 19, I was taking Minocin (Minocycline 100MG) antibiotic and Vicodin for pain. My arms & legs resembled those of a burn victim, from wrist to shoulder. I had limited movement due to the tight, cracking, peeling, and blistered skin. (see

Current Diagnosis: It was determined that the Vicodin and Motrin I was taking due to the broken nose, masked the symptoms of the Strep Throat and the Strep Throat went untreated too long before an antibiotic could take effect. Thus creating Scarlet Fever. In treating the Scarlet Fever, my body rejected multiple antibiotics, the combination of antibiotics in my body created complications, called Stevens Johnson Syndrome.

Name:: Kathy       

Story::    I am 44 years old. When I was 17 years old I was prescribed a medication called donnatol. After taking the medication for 27 days I woke up one morning with red eyes. I went to school that day and the school sent me home thinking that I had pink eye. My eyes became very sore and itchy. The next day I woke up I had little tiny blister all over my body my parents thought that I had a reaction from some avon product that I had tried. The next day the little blisters turned into large water blisters I was then admitted to the local hospital. That night the nurses put me in the bath to try and soothe the itching. When I was in the bath tub my finger nails and toe nails started to fall off. My hair also started to fall out. My family doctor told my parents he didn't know what he was dealing with so I was sent by ambulance to a hospital in London, Ontario. By the next day the large water blisters turned into large scabs. My father said it looked like someone through me into a fire and then pulled me back out. The first 3 weeks to a month was a total haze to me I know that I almost died several times. The scabs were over my eyes and I was unable to see, the blisters were in my mouth I lost about 36 pounds when I was in the hospital. The doctor told my parents I would not live. A well known skin specialist was called in (because he had retired) to look at my case. It was a few days before they told my parents that I had Stevens Johnson Syndrome a very rare disease. The doctor told my parents the only other case they were familiar with was 25 years before me and that person did not live. I was treated like a burn patient making burn pads and putting on my body. I was badly scarred for years after and still have scars to this day. I have had several surgeries on my one eye. I have had tubes in and tubes out because it waters all the time. I am fortunate because I still have my sight. I have also had a dermabrasion to remove some of the scarring from my face. I feel bad because even though it is 27 years later for me it was as if it happened yesterday. Just recently my doctor wanted to prescribe me Bextra. I refused to take it because of my experience with SJS. My doctor was not happy with me because I didn't trust his judgement. All I know I would never want to deal with that again. I can't express enough my heart goes out to anyone who has had to deal with this horrific disease the scars last forever both physical and emotional.

Name:: amanda       

Story::    My 8 year old brother Sean is suffering from SJS. He was diagnosed on Christmas eve and admitted to the pediatric intensive care unit. I cannot begin to imagine the pain he is feeling. It is so hard to see someone you love, suffer in such a way. He is such a strong little boy, I know he will beat this. My family prays everyday for a full recovery.

Name:: Regina Phillips       

Story::    On January 5, 2004 my sister was diagnosed with Stevens Johnson Syndrome at a Kaiser facility in California. The was nothing Kaiser could do, however a decision to transfer my sister to a burn unit at another facility was not made until two days later. Right now I would not like to go into detail regarding my sister because her husband is taking care of that. However,I would like to tell you that with all the commotion going on a family friend stated that two years ago her sister had a severe allergic reaction similiar to my sister from the drug bactrin and was seen at the same Kaiser facility. She was never told that she had Stevens Johnson Syndrome and today she is still suffering. I am still in astonished about this whole Stevens Johnson Syndrome. I work in healthcare and another one of my sisters has been in healthcare for over 20 years and she has never heard anything about Stevens Johnson. This is not as rare as we were told to believe. Is there anything that we can do to help with this? Please let us know. Thanks, Regina Phillips

Name:: Drew       

Story::    I'm 17 years old in New Hampshire. A short while ago (few months max) I picked up a sickness that was traveling around school. I began to feel ill, and over the course of a week I developed unbelievably extreme cold/hot flashes which caused me to switch from the Air Conditioning to electric heat constantly. I developed a dry cough early in that week as well, and was prescribed Robafen syrup, which contains Codeine. I took it once that night, then again a couple days later, mid-week. It didn't seem to help much. The second time I took it, I went straight to bed afterwards. An hour later, I woke up with a strange blister on the inside of my lip. A little startled but unsure of what to do, I just went back to bed. The next morning I awoke with blisters coating my entire upper lip. My mother took me straight back to the doctors office. I honestly don't even remember what they said - probably something similar to "Well, we'll just wait and see if it gets worse." The next day, it did get worse. I had gone to bed and woken up the next day with the blisters in my lower mouth too, starting to spread to my cheeks. I was scared as hell. We went to the emergency room, armed with ample supply of tissues that I could hold to my mouth. The searing pain I felt during the few minutes it took for a new blister to inflate with fluid was unimaginable. I was admitted to the hospital that night. Things only worsened from there, but slowly. I was put on an IV for fluids, they tried giving me morphine, which made me itch. I was in the hospital for over a week, eating nothing, drinking nothing, and completely miserable. Amazingly, nothing but my eyes (which were absolutely crimson) and mouth were affected, with the exception of pain during urination (no visible blisters formed in areas but mouth). The lesions did spread to my throat but not too far. I have not vomited for approx 10 years, but I can't tell you how close I came on many occasions during this period of time. The doctors seemed to think I had a strange mucus membrane reaction of some sorts with mycoplasma pneumonia (aka "walking pneumonia"), which I did have. Yet, the similarities of my blistering mouth condition are too closely related to SJS for me to think otherwise. I still think this Robafen with codeine caused a reaction and I gaurantee you I will never take it again. If you are reading this and have never had SJS, I pray that you never will. In the month following the reactions I made a pretty much full recovery, despite the occasional strange feeling that my cheeks/lips are somewhat stuck to my teeth, and a small pea-sized bit of lighter colored skin on my lower lip (could be scar tissue, as my lips were peeling on an extreme level).

Name:: Sarah Yeargain

Story::       Woman survives 'losing her skin'
A woman whose entire skin peeled off after a rare reaction to a drug has made a 'miraculous' recovery. Sarah Yeargain of from San Diego, California, developed the often fatal condition after taking an antibiotic.
Click here to read more in PDF
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Name:: Denise Venmore       

Story::    My story is brief but at the same time very long. My son, Lloyd James Venmore died on 21 April 2001 after a 7 week illness. He was admitted to hospital with unexplained seizures (apparently not epilepsy) and was treated for Brain Stem Encephalitis although this was never proven. All the tests came back negative. He was intubated, had pipes and machines attached to everypart of his body but they could never find out what was wrong. He was in ICU for the best part of 5 weeks and then they 'brought him round' again. He was placed in 'high care. After a while he slowly began to recognise us, and started to talk again albeit very basic. That is when our lives changed! Just as we had hoped that he would be home in time for Easter, the rash broke out. At first we thought it was measles, then a heat-rash. Eventually SJS was 'diagnosed'. The list of medication that Lloyd was on was too lengthy to know which drug caused his reaction. It could even have been a mixture of a few. It was a nightmare (and still is). Although just about every doctor was called in to see Lloyd, nothing could be done. He was readmitted to ICU, reintubated and died just after midnight on 21 April 2003. A day or two before he died he asked me to 'make it go away'. Those are four words I will never forget.
The end of our lives as we knew. And the beginning of shit forever!!!!!!!! Fortunately I have a lovely little girl, Nicole (who was 6 at the time)now 9, who is the only thing worth living for now.

Name:: dayna       

Story::    This is a story about my sister. she is currently hospitalized with sjs and has a swollen tongue , blisters all over her body, swollen face, trouble breathing, ect. we know nothing about this syndrome or cures if any for this what can we do?

Name:: Sally       

Story::    When I was 9 my little sister got a bladder infection, she got antibiotics to help it. She started getting itchy, and started getting bumps all over her body. The doctor just looked at her and said she had the chicken pocks. It was too late before we knew it was serious. She was admitted 2 hospitials before being life flighted to Pittsburgh Childrens Hospitial. She stayed in there for months, I remeber my parents going to see her everyday. Finally they let me go see her, they had her under a medicated coma so I couldnt talk to her. I remeber seeing all the machines all around the room, so many things hooked up. The day after I went to see her in the hospitial she died. Both of her lungs collapsed, she was only 5 years old, and it all could have been avoided if the doctor would have actually took time to run test. I am 17 now, and I still cry myself to sleep because I miss my little sister

Name:: Angi Strait       

Story::    I was 18 years old when I came down with Stevens Johnson Syndrome after using Bactrim. I had finished the entire round of antibiotics when I started to break out with what my doctor thought to be hives. After a 3 day period of time with the condition worsened and I was running a high fever, another doctor in the practice was finally able to diagonse me with SJS only because he had a patient numberous years prior that had also had SJS.I was then admitted to the hospital immediately. By the time they figured out what is was, the lesions covered over 90% of my body. I had them internally and externally and by this point, it had become life threatening. I was placed on large amounts of steroids which then caused me to bleed from my kidneys. I ended up spending 10 days in the hospital and taking a total of about 5 weeks to completely heal from the episode. I had large bruises and discolorations for several weeks following. I now suffer from sever dry eye syndrome and tounge ulcerations that happen periodically. I have never had SJS since, but I have never had any medications that contain Sulfa since either. I can say that SJS is a horrible ordeal to go thru. It is a very miserable, painful thing to experience and doctors need to know more about it so they can diagnosis it.

Name:: gemma boyd       

Story::    In febuary 2000 the house was in need of a good spring clean, so my mom rowena boyd 40 at the time got to work. When she finished washing the kitchen ceiling she stood back and admire the results of her hard work. she put down the cleanser and sponge she'd been using and filled the kettle. As she waited for it to boil she took a couple of painkillers she'd been prescribed for my moms arthritis. Her legs were aching and it was time for a break. Then my moms eyes started feeling itchy. They looked bloodshoot. She thought she must have rubbed them when she had cleaning materials on her hands. Then she noticed a rash on her body. My mom then rang her surgery and saw her gp. She was prescribed some eye ointment and a cream to soothe her itchy skin. By now the chemist was closed, so my mom came home, intending to pick up the items the following morning. But when she woke up, she couldn't open her eyesat all. Her eyelids were so swallen that she had to prise them apart with her fingers. Pus began to ooze out and it hurt to see the bright light steaming into the room.
quickly my mom shut her eyes again. Eeverything itched. The rash was worse. She woke my dad jim. Shocked at what he saw, he took my mom straight to the accident and emergency department at the princess royal hospital in telford, shropshire.
the doctors were puzzled. They asked my mom about the cleaning products she'd been using. Then they asked her what she had eaten. They considered various possibilities, including measles, smallpox and meningitis. She was admitted for observation. Doctors put my mom in a bay away from other patients in case she was contagious. Everyone who came near had to wear an apron, gloves and a mask. By the afternoon my moms temperture had soared and the blotchy rash had turned into giant blisters, some the size of tea cups and wobbled when she moved. my sister michelle 17 at the time came to visit, but at first she can't recognise her own mother.'Mom, your neck's so swollen it's as big as your head,' she said horrified. The doctors were still running tests. One of them asked if she had been taking tablets? My mom admitted she'd taken painkillers because her legs were aching. A specialist made a diagnosis. She had toxic epidermal necrolysis- an extreme case of stevens johnson syndrome. It seemed that my mom's condition was an extremely rare response to a non-steroidal anti inflammatory drug she had been taking for three years with no trouble at all. Over the next few days blisters started appearing on my moms face, down her throat and in her genital area. Going to the lavatory hurt. Eating and drinking hurt. It was all she could do to take the occasional sip of water. She needed to be tube-fed and she had a drip in her arm to keep her hydrated. The hospital didn't have the facilities to care for anyone so seriously ill, so my mom was transferred to the burns unit at selly oak hospital in birmingham. Because light still hurt her eyes mom kept them shut most of the time. Her eyelids started to knit together. She was terrified. She'll lie there wondering if she would ever see again. Her fingernais and toenails fell out, as did some of her hair. Her face felt stiff and hard where a crust of skin had formed arond her lips. One of the nurses rubbed in cream to soften the crust enough to pick off. When my broyher james 16 at the time, finally plucked up the courage to visit says to mom 'mom you stink.'The blisters flesh had died and was rotting away. It took three weeks before the the blisters started to clear up. A month after she was admitted to hospital my mom was allowed home.
my mom has been left with eye problems. She will always suffer from dry eye syndrome and needs to use artificial tears for lubrication. She is still very senitive to light and, worst of all, has developed cataracts that blur her vision so she can do little more than tell the differance between light and dark. she's seeing a specialist who hopes he will be able to remove the cataracts when her eyes are strong enough, her eye sight will never be as good as they was, but as least she'll be able to see more than she can now.

Name:: Mitchell Scantlen       

Story::    Dear SJS;
On 10-30-90 I had an industrial injury resulting in a ruptured disc in my lower back. I was sent to a nearby medical care facility, then sent to a physical therapist which made things worse. Next, I was sent to an Orthopedic Surgeon and then to a Neurologist. I was prescribed Tegretol and Soma. I began to have nights sweats, waking up soaking wet all over. On 1-1-91, I awoke with a temp of 104.7. An ambulance was dispatched and I went to the emergency room of a local hospital. I was hospitalized because they could not control my body temperature, and my blood showed an elevated white cell count. I was there 13 days. They thought I had Rubella, but bllood tests showed that I did not. My temperature stayed high at 104.7. It would be brought down with meds but when they wore off, it went right back up again. I retained almost all of my fluids and the heat of my body exfoliated my entire outer layer of skin. I was enormous from the fluid retention and renal problems. When my body did flush I lost 32 pounds in 24 hours. I was released from the hospital and all sorts of skin problems developed. Huge, angry, lightning-bolt like eruptions developed and I became prednisone dependent. I was too sick to have a back operation. I was bedridden for over two years suffering from severe skin disorders, back pain, thyroid toxicosis, vitaligo (holes of depigmentation on my hands and arms and legs and feet), a weak immune system, and an entire spread of dermatological problems. My hair began to fall out and huge red rashes covered me. Because I couldn't work and barely able to walk I lost all my savings. My home was repossessed and I had to declare bankruptcy. My looks, my perfect credit, everything was gone and my wife and I divorced. A cloud of depression overtook me. I eventually had a back operation but 14 years after my systemic reaction I am still totality disabled. I continue to have back pain, skin problems, depression, IBS, generalized sleep disorder and now I also have diabetes. The Doctor that prescribed the Tegretol and the Soma told me the reason I got sick was because I had AIDS and it was all my fault. I had tests run that confirmed I didn't have AIDS and I was and am, HIV negative. The Doctor also never ran a blood test the entire time I was on Tegretol.

Name:: Judith Graddy       

Story::    I just found this website and wished I would have found it when I was suffering with Steven-Johnston syndrome. My case started on Dec.5,1999,I was prescribed Lamisil for a toenail fungus .After ten days on it my arms broke out in blisters ,I called the Dr. and he had me go off for ten days and then he prescribed Sporonax . After four days on this drug I was running a very high fever and purple hives all over my body and completely out of it.After consulting with my personal physician ,my husband called 911 . The Hospital ER said I had hives in my eyes and eyes also.That night I was near death .My arms swelled and blistered ,from what I could see they looked like they were the size of an elephants legs.My Dr. said I lost fifteeen pounds of muscle mass. I experienced what everyone else has went through,burns all over my body ,skin,hair and nails coming off. Literally burned inside and out, plus a change in personalities. It took me two years to make a comeback and at this time I am going through all kinds of dental surgery. It seemed to have settled there. I contacted Sporonax Drug company and tried to get some compensation and they said on the packaging it says a person might have a reaction to a rash. Since then due to dental surgery I have had allergic reactions to Zithromax,Amoxicillan , Clindamyacin, ending up in Emergency Room every time. I have had two surgeries and made it through them with out taking Antibiotics.

Name:: Ronda       

Story::    In September, 2003, I took my sister to the hospital to what seemed like a sinus infection. Her face was puffy and she had flu like symptoms. By the time we made it to the hospital her temperature was 106. She had what looked like a rash on her face and chest. By that evening her eyes were beginning to close and they were red. Not red like they were irritated. I mean red like that red-brick color crayon out of the crayola box. And as time passed, the bumps on her face were turning into blisters. Late that evening, she was diagnosed with Stevens-Johnsons Syndrome. My family and I had no idea what Stevens-Johnson Sydrome was or how she got it. The doctors told us the disease came from an allergic reaction to prescription drugs. My sister was not on any prescription drugs. Three days later she was transferred to a burn unit at another hospital because her skin was literally sloughing off of her face and chest. Her eyes were completely shut. She could not see. We were all scared because we didn't know what was going on. While in the hospital, my sister was put on a ventilator, had two surgeries on her eyes, and was unrecognizable. She was under about two weeks. She spent about a month in the hospital. It's now February and she's beginning to look like herself. Because she's African-American, her skin is blotchy, but her full color is expected to come back. She lost her fingernails, but they are growing back as well. Her eyesight is almost normal. She may or may not have to wear glasses. Her hair was shaved off, but that's growing back too. The doctors still don't know where the disease originated - they are leaning towards a viral infection, but they say they may never know. She still has problems eating - her gums are still a little swollen and she has temporarily lost sense of taste due to the blisters on her tongue, but that's healing as well. I know the only thing that got our entire family through this ordeal was God. God's healing powers are awesome. With prayer, faith, love and support from friends and family - a strong unit - she made it through. We are so thankful that she is still here. She has been amazingly strong through this incredible ordeal. We don't know what life would have been like without her presence. Thank you for listening.

Name:: Tanya       

Story::    back in 1980, while in the USAF, I was diagnosed with Chrono's Disease (although I really dont have it), and perscribed asulfadine. Within a months time, I ended up in the hospital with faver over 104, rash over 100% of my body, my tongue swole and burst, my hands and feet swelled to almost burting, and my eyes felt like they were on fire. Diagnosis: Stevens Johnson Disease. After spending a month in the military hospital I was released from the service I was denied a medical discharge since I "voluntarily" took the medicine.
Since then, I have had recurring exema rashes, and continued conjuctivitis. With the cpmkictovotos (or dry eyes) my vision has decreased due to the scratching of the cornea. In 1998, I had a cornea transplant, which rejected in 1999.
As of today, I alathough I have some vision, it is blurred due to the left eye being totally scarred and the right eye partially scarred and strained. I live with the sensation of "burning" eyes, as my eyes are sensitive to the salt of my natural tears. Last October, I was diagnosed as leagally blind. There is a possibility of clearing if I am willing to take a drug that often causes reactions but is necessary for transplants and then I would need both a stem cell transplant and a cornea transplant. Right now I am "caught in the Social Security system". They refuse to accept that I am disabled. And until they acknowledge and pronounce that I am indeed disabled I am left without medical insurance and the ability to say yes to any corrective actions.
I do not look for sympathy, as I am thankful for what I have now and what I have been able to do so far. I am not giving up or giving in.

Name:: Crystal Gregory      

Story::    My husband got a job in North Carolina Christmas 2001 because the job he worked at was closing up shop for the holidays. We move up to NC and was there about two weeks when I started to feel bad. I already had psoriatic arthritis and it was getting worse. Eventually my right knee had totally swollen to the point that I could hardly walk. I went to the doctor in February 2002 and he put me on some medication to help with everything. I was on the medication for about a week when we came back to Georgia for another job. I was in the shower when I noticed that my skin was red poka dots. When we got back to NC 3 days later I called the dr and he told me stop taking the medicine because I was having an allergic reaction to the sulfa. At about that time we had discovered that there was sulfur in the water. Needless to say, at the end of Feb; first of Mar we moved back to Georgia for my husband had gotten a job back 'home'. After that dr told me I was allergic to sulfa/sulfur my parents went and bought me bottled water to drink for the remainder of time in NC. It took about a year, but the swelling of my body eventually went away. I have also lost two wisdom teeth and a top molar. Apparently the sulfa/sulfur decaded my teeth and made them extremely week.
It has been two years since that happened. I am doing fine and my family will never forget the time I nearly came back to Georgia in a "pine box".

Name:: Peter Kalms      

Story::    I am a 52 year old male that was diagnosed with SJS. My allergic reaction started because I was taking Celebrex because of lower back pain. The rash started on my back and chest and I finally went to the hospital because I was ready to scratch myself to death. The doctors at the hospital did not know where the rash came from so they gave me some Benadryl for the itching. The rash continued to spread and one of the doctors asked me whether I was taking any other medictaion. When I mentioned that i was taking Celebrex for my back pain he told me to stop taking it immediately. I went to my family doctor who told me that i had SJS. I was covered from head to toe with the rash. My doctor had me on steroids which eventially helped. I was not admitted to the hospital but my doctor told me that i was very nearly admitted. My face was severely swollen and had many open lesions. I credit my wife with curing those with cotton balls soaked in a saline solution. She continually bathed my face with the saline solution and that basically saved me from having scars from SJS. I am currently still going to my doctor because he suspects that I have developed kidney problems because of SJS. Thank you for letting me share my story. I have read some of the other stories and consider myself lucky compared to some of the other cases of SJS that I have read.

Name :: Jennifer      

Story ::    Found out today they think SJS. Please e-mail me with any thoughts or comments. I'm a 34yr old homemaker with 4 children and a husband. When I was 8yrs old, I had a severe reaction to PENICILLIN: Full body hives,couldn't,high fever,couldn't open eyes, joints swelled to the max. Well, 3 weeks ago I was diagnosed with tonsilitis at the urgent care and given an RX for AUGMENTIN. It was the max dose possible....4,000mg every day for 8 days. I finished ALL pills. Four days later I noticed a rash appearing quickly. Still didn't make the connection that augmentin is a derivitive of amoxicillin. The next morning I awoke with what appeared to be measles from head to toe and eyes goopy/blurry. The pain in my joints (knees,ankles,elbows and neck) was almost unbearable. I started having trouble swallowing so my husband drove me to the hospital. Immediately, they started an IV, breathing treatment, benedryl, epinepherine and morphine for the pain. (phew!) After 5 hours they decided to send me home with steroids, albuterol inhaler, and pain pills. They didn't do much for me. I couldn't breathe/swallow again and had to call an ambulance. They quickly arrived and pumped me with all the meds thru an IV again. At the hospital, my rash got worse, pain was incredible to where I couldn't walk on my feet. They initially called it: Acute Allergice Reaction to Augmentin. I had numerous blood tests taken/gasses, throat,nose and rectum were cultured, cat scan of neck and chest x-ray. They called an Infectious Disease Doctor in because I was so sick...the meds weren't working and I was getting worse so it must be something in addition to the reaction. I'm receiving my lab results tomorrow although from what I've read, it's possible to still have SJS and it not necessarily show up in your tests. I was admitted and stayed 8 days with IV meds every 4 hours round the clock and breathing treatments. They sent me home still not sure of what I had but on 8 medications daily. My rash as of day 12 is improving but vision is decreasing, pain is still unbearable without some medication and I can't even pick the baby up. It's breaking my heart. My new primary physician saw me today and thinks it is SJS. My knees are so swollen with fluid I have to have them drained and cortisone shots. My rash is better, mostly due to the prednisone but he thinks it will come right back when I stop it. He added 2 more meds to my daily regimen and I have to see him in 4 days again. My question is when or if I'm going to get better. He said he couldn't answer right now and try to just take it "one day at a time." I've read so many different stories and don't know really what to think. I'm also not sleeping well at all. I'm scared and glad I'm being taken care of, but wonder if anyone has any thoughts out there? The doc made it seem today that it could be a few weeks before I start to get some relief. Does this sound like SJS initiated from an acute augmentin reaction? If I have SJS, what kind of long term prognosis am I looking at realistically or is it truly unknown if or when I will get better. I'm too young with 4 little ones I want to play with and run around with. I can't imagine living with this severe joint pain and pure exhaution for a long period time. PLEASE E-MAIL me soon to send any thoughts...good or maybe not so good. I wish all of you the best and thanks for making your stories available to me as well. I'm trying to learn as much as I can.

Name :: Felicia Chapman       

Story ::    A few months after my Year 7 camp, i started feeling very tired all of a sudden. As a child, i had always had the occasional ulcer, but when my mouth suddennly broke out with them, including all over my lips, i began to panic. I went to my doctor, and he prescribed me some anti biotics- and put it all down to stress. A few days later, sores started appearing all over my body,i was having trouble breathing, and my eyes began to become extremely sore, and i was having trouble with my vision. The next day, i collapsed at the clinic where i was having a blood test- and was rushed to hospital. It was only after a lumber puncture, that the doctors were able to diagnose my condition- but it was more complicated than just steven johnson's syndrome. During my camp, i had contracted Micoplasma Pnemonia- and during that time, my left lung had collapsed. My liver, pancreas, and kidneys all shutdown. The doctors kept having to insert new IV's, as my veins kept collapsing. After consistent eye washes, mouth cleanings, and photographs from student doctors for about a week,i began to respond well to treatment. From then on, i got better. I now have fully recovered, even though i currently have some scaring on my lips, and a few faint marks from lesions on my legs. But there is one person, who i could have never gotten throught this without- the person that slept at my bed side each night in hospital, who made me eat, who read and sang me to sleep, and gave me all the love and will to get though this terrible ordeal- and that is Judy, my mother. I love you mum, and thankyou for all that you have, and still do for me.

Name :: Lee French      

Story ::    Hi, I am a sufferer (or past sufferer, don't know in which way you would say it, as it always seems to get brushed under the carpet whenever I bring it up with the doctors) of SJS. I am 19 and reside in Newcastle-upon Tyne in England.
My SJS story seems to follow a worringly similar trend to must of the stories on this wonderful website. My story starts mid December of 1991 when I was just the mere age of 6. I had contracted a urinary infection and was put on a treatment of anti-biotics. After taking the reccomended doses for about 3 days my mam noticed that I started to break out in light rashes but we didn't think too much of it, as you generally wouldn't, you would just expect it to go away. After about a week from the start of my anti-biotic treatment the rashes had worsened and had started to take over mainly my face and my backside.
We visited the doctor on two or three occasions and were told I had the very nomral infection that was chicken pox. Taking the doctors word for it, as you do, we just carried on as normal. Until I was in so much pain, with all the blisters and hard skin (The rash and burn like blisters had totally taken over my face making me look unbearable and to this day people cringe and moan when they see the pictures, my lips were as black as the night sky and so hard to the touch that it felt as if they could be snapped off) that my mam constantly rang the doctors only to be told it was a worse form of chicken pox. The doctors had not seen what state I was in at this point. My mam, as worried as she was, just carried on and took the doctors word for it, even though my case was getting worse all the time. It got to the 24th of December, Christmas Eve, when my mam recieved a phone call from our GP. He stated that he had researched and found out what was wrong with me and told my mam not to do anything, he would be right over with his nurse. They both came over to the house took a few looks at me and then had me rushed straight to the RVI Infirmatory Hospital in Newcaste. There, after consultations with my GP and a Dermatoligist from the Hospital I was eventually diagnosed with SJS. After time they also diagnosed that it was the Septrum, a type of sulphonomide, in the Penicillin in the anti-biotics that caused my allergic reaction.
I was in hospital over Christmas and what should have been a great holiday for every kid turned into a holiday when I was wired and dripped up, not able to drink or eat and every time I tried to speak it was like someone ripping a layer of skin off my lips as they were so hard and blistered they were stuck together. After a period in the hospital I gradually started to get back to health. Even when I left the hopital I had to bathe in a horrible purple liquid to heal my skin, and also had to sit holding a bowl of purple liquid with my lips inside the liquid to attempt to 'unstick' them. I had to return to school with the blisters still slightly visible and my lips still slightly black and crusty.
Over time I did recover very well, although I contracted asthma, have slightly hard lips now, have slightly patchy skin on my face (especially when I am hot) and have trouble with my sinus', with my nose always being blocked. Until a few months ago, I hadn't really thought about SJS a great deal except on a few occasions, I did know I was lucky as my mam had been told by the doctor that it could be worse. But after researching SJS I realised that I am unbelieveably lucky, as I have no real noticeable effects from my ordeal. And after reading about other peoples stories, I have realised what a terrible disease SJS can be and is.
Every time I visit the doctors now, even if it is for a broken finger, the first thing they ask me or state to me, normally before confirming my name is "Oooo, your majorly allergic to Septrum and should avoid any type of Penicillin if at all possible... ok." So I guess it must pop up on the screen as soon as they activate my records which is a good thing! I was put in the Medical Journal in England as my case was so rare in such a young child. I am also in the medical reference book "Physical signs in dermatology" by C.M. Lawrence who was my Dermatologist at the hospital. After I realised how rare the disease was and how high the mortality and serious effects rate was I thank God I am ok to this day and pray for those who have been in contact with or have had family that have been in contact with this awful Syndrome. Thank you for letting me share my story. Lee French, Newcastle, England

Name:: Ernest Waite       

Story::     My story dates back to May,2000, I went to the Veterans Hospital in Cleveland, Ohio because I thought I was coming down with the flu. I go to the emergency room and the doctor sent me for x-rays, then the Doctor tells me I have a case of Bronchitis and what antibiotic worked for me. I replied about a dozen times KEFLEX,he kept on persisting that I try LEVOFLOXACIN and I kept telling him I don't want to try anything new when I knew that KEFLEX works well for me. After taking LEVOFLOXACIN for 7 days I kept on feeling worse each and every day. Then one night my daughter and I went to the movies and when we got home I started breaking out with approx.150 blisters in my mouth and down my throat, I waited till the next morning to go back to the emergency room and as I was waiting I started oozing pus from my eyes, and my penis and groin area turned black and and I was in the most terrible Pain. For the next 20 days I spent in the hospital I wanted to die , I was put through biopsy after biopsy. I didn't eat for about a month, I lost over 25lbs.. My penis didn't stop bleeding and the skin kept sloughing off for over a month. After the blisters started going away the disease (SJS) itself left me with burned nerve endings in my mouth and my penis. I have been going to Doctors at least 4times a month, I have an implanted Morphine Pump to control the pain in my penis, I am also taking 40mg of oxycodone twice a day for the burning pain in my mouth and throat. I have my morphine pump filled up every 6 weeks. I still break out with lesions all over my legs and arms obout every 4 months, my throat is always burning and stays red. I use cetacaine sometimes to relieve the pain. I have been married for 24 years, I haven't been able to make love to my wife since May 13,2000. Thanks for letting me tell my story.
The Veterans Hospital In Cleveland, Ohio has been really wonderful thats to include the whole staff, except for the Doctor that wouldn't give me KEFLEX, I had asked him at least a dozen times for KEFLEX.The lesson I hope everybody gets is do not take any medicine that you never heard of or haven't been tested for. Thank You so very much!!!

Name:: Therese Fibraio       

Story::    My daughter had Stevens Johnson Syndrome as a child in 1984. She was the first patient at JFK Hospital in Edison, New Jersey to have it. Thank God the doctors dignosed it rather quickly and were able to treat her. It was hell and I will never forget her blistered face and body and screams of pain. It was touch and go for a few days, but she pulled through. Thank God, she is now a grown woman and married with no side affects from this horrible ordeal. She really doesn't remember it. She was considered very lucky.
My father also suffered from Steven Johnson Syndrome in April of 1991 in Bayonne, New Jersey. He was not as fortunate as my daughter. He went into a coma. We didn't think he was going to make it. I kept telling the doctors what was happening to him reminded me of what happened to my daughter. But they wouldn't listen. Finally, they called in an eye doctor and he was dianosed and treated for Stevens Johnsons. He lost his hearing and his vision. He had dry eye and his eye lashes grew in and had to be plucked. He was unable to open his eyes and had to stay in darkness for the rest of his life as he could not bear the light in his eyes. He died in August 1991 from Lung Cancer.
I have seen this horrible syndrome twice. I never want to see it again. It will haunt me the rest of my life. I have tried to let my family know because I think it had to do with the antibodics. Most people have never heard of this and don't realize what it is like. Please, keep this site going. We need to inform the public.

Name :: Robin H.       

Story ::    My son was treated for SJS just this month, he is 15 years old. It all started with a ear and sinus infection and was put on amoxicillin by his doctor, that was on Wednesday and by saturday he had blisters in his mouth. I took him to the ER of the near by childrens hospital, they look at him and said that it was a virus and sent him home. Sunday morning around 1:30am he woke us up having a hard time breathing and could not swallow so we took him back to the ER they told us again that it was the virus and we need to let it run its course. Finally on Monday we took him back to his doctor he then called the ER and wanted to have him admitted to the hospital. The ER doctor brought in a dermatology doctor and she looked at my son and told us that he had SJS. I have never heard of this before now. My husband and I were scared didnt know what to expect. My son is recovering form this today. He didnt get it as bad as some of the pictures that i have seen.but what he did get was bad enough. Robin

Name :: Derek       

Story ::    I went to my GP for a mild chest infection and he prescribed Feldene (piroxycam?) almost immediately my mouth started to break out in ulcers, I thought it was just a case of a bad infection and continued with the meds. You usually cannot get to speak to the GP's here in South Africa and tell them there is a problem without actually going to see them again. Never mind if you are too ill. I went back to work the next week but was in agony, I couldnt eat, it was agony to go to the toilet and my boss was harrasing me like crazy. Eventually I realised there could be a problem and went back to the doctor who just ummed and aahed and said "it will clear up". I wasnt satisfied and went to another doctor who thought it was herpes or SJS. I was sent for swabs and they were agony too. But it was diagnosed as SJS. I spent 2 weeks in bed living on ice cream and water. I never went back to that doctor and nowadays watch what meds I take. I had a similar reaction with Buscopan and the moment I felt that familiar tingling stopped immediately. I recall the doctor saying the only thing I could take was aspirin. I dont think many people here have seen a case, and I never knew it could be so severe, its a pity that the doctor never actually listened when I told him there was a problem. I never went back to him either...

Name :: Lydia       

Story ::    My story only just began today with my introduction to this never metioned before disese. I am a foster parent who is doing respite for a child this week. When she was dropped off to me she had a rash on both of her cheeks and did not look like her ussual self. I was told by her foster mother not to worry about it, they had taken her to their pediatrician and it was just an allergic reaction to something. She came with some hydrocortizone cream and some eye drops, in addition to her psycotropic medication that she had been on for about two weeks. By that evening when I went to put the cream on and what not I just didn't feel like this was right at all. She was looking considerablly worse and the rash was spreading down her chest. Her lips and both ears were swollen and extremlly red. I told my husband that if it was not better by the morning I was going to take her in to our pediatrician. Needless to say it was worse, much worse. The rash had spread down her chest and arms her lips were extremlly swollen and cracking in addition to hives that were now appearing randomlly across her body. Our pediatrician was booked so we saw one of his associates. He seemed some what bewildered. He called in two other doctors to collaborate and they all agreed that it was some type of an allergic reation. Unfortunatlly at the time I did not have the child's complete medical history including the time line in which she had been taking her medications. I was given an antibiotic and told that if it got worse to go to the hospital where they could run some more conclusive tests. The next morning the rash had continued to spread and her lips appeared infected and were sloughing. I had been told that it would take a while to see any difference from the antibiotic so I choose to wait another day. She said that she was not feeling any worse, so I thought it was just a matter of time. The next morning there was no question that nothing was right about this treatment and the child needed immediate attention. She was now having trouble swallowing. Her mouth was full of ulcers and the roof of her mouth was sloghing off like her lips were the other day. Today her lips were black with hints of red only from some blood breaking through all the mess. She was unable to walk due to the pain of the rash having spread to the soles of her feet. I did not wait another second we went dirrectlly to the emergency room where we were triaged and told to have a seat. A nurse passing through saw her and asked a couple questions and told us to come with her. She informed the triage nurse of the room that she was taking us to. I don't think she appreciated the assistance. In this room we were seem immediatlly and by several staff to include a pediatrician, and opthamologist, a dermatologist, and an allergy specialist. They all asked the same questions about her medical history that I now had done as much research as I could and had some answers for them. Every one of them seemed extremlly concered and all of them agreed in their medical jargon of the ailment. Finally it was told to me in both the medical term as well as the term that I was able to understand and yet still had no idea what it was. They explained in a limited manner so as not to scare me. When I asked again of the name so I could look it up they warned me flat out that it would scare me. Upon having done a very limited amount of research I have found that there was much more fear in not knowing and watching it spread so rapidlly without any answers than what I have found online. In fact it would have been much worse if we had listened to the first run of doctors. So far we lived it. It might not be a pleasent thing to have and I certainlly would wish it on no one but, if we had not gotten a diagnosis, then what. Death seems considerablly worse, at least to me. The child is currentlly in the hospital. I have just gotten home. Knowing that they know what it is, and that one of the medications has caused it. They admittedlly do not know which one and as a precaution we will assume her to be allergic to all medications given within the last month. Once she heals we will have to find a new blend of medications that are not related to any of the previous. I don't find this nearlly as daunting as explaining to CPS how a child has died in my custody. I'd much rather doctor some wounds and deal with some behaviors. As a foster parent I am required to have trainings on medications and their side effects on an annual basis. Of all the side effects that have been pushed on us I have never heard of this reaction until having lived it. This is one that should with out a doubt be in those trainings. A rash can seem harmless and yet this is anything but. I will most definatlly be bringing this new found knowledge to the next med training. In addition I will NOT wait at the sign of a rash in another child. Thank you for you site and for sharing your story. It has made all the difference in knowing the truth in the lack of general knowledge, not just mine. Thank You

Name :: diana hurley      

Story ::    our 10 month old grand daughter is in florida hospital with symptoms of sjs or erythema multiforme.she has the rash with purplish gray centers,swelling,fever,vomiting,diahrea,pain when we pick her up. she was slightly dehidrated.she was a premature baby,born at 27 weeks of pregnancy.both of her parents are with her and watch over her very closely.we are interested in any information you have for us.the rash covers alot of little's been 4 days .it seems to become real red , then fade and then become again.the doctors are trying their best.we just pray it works.hopefully it can be treated and she will be home soon. there are no blisters as of yet.large red patches and she is just miserable and so are we.we need more information.

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 Severe. Toxic Epidermal Neurological 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 checkup 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 up because she was concerned. But I told her if it just has to run its course I'm 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 needed 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 quickly 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 mom asked what do we do....and the doctor replied 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 within 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 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 sloughing off to where I couldn't they immediately put me on a ventilator for 3 weeks and PAIN medicine in an IV for about a month 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 like a 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 finally one night it got 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 pneumonia...we are almost certain that i picked this up in the 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 blockage from scar tissue in the vaginal area...which requires VERY special surgery....the whole team 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 trustworthy) 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 surgery to remove the tissue from the eyes there is no guarantee it won't grow back..and i have burns all over 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 strength 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 back 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 Stevens Johnson story i encourager you PLEASE PLEASE either e-mail me or post on this site I just would like to let everyone know so it will never happen to you or child! thanks so much... Lindsay

Name :: Jessica Stokes       

Story ::    My experience starts in 1999. When my daughter had a headache and blurred vision. Her stomach was upset also, I took her to the doctor they thought it was a sinus infection. The doctor could not find anything wrong with her, so they did a CAT scan. It turned out the she a something on the brain they did not know what. We went for a MRI. We found a medical neurologist and he thought it was swelling of the brain. So we watched it very close for months and then he sent us to a surgical neurologist. It started to grow at this time and that's when he told me it was a brain tumor. My daughters name is Amber she was 8 years old. The doctor started her on Dilatin before surgery in case of seizures. She turned 9 right before her surgery. The tumor was removed in Dec of 1999. It was on the left frontal lope of the brain. She did very well concerning all she went through. She had a seizure after coming home from the hospital. It was a bad one and we had to go back to the hospital where they kept her over night and increased the dilatin. It was now new years and she had a low fever I called the doctor and he said to watch her and take her to the ER if it went up. Over the next two days the fever did not go away and she seemed like she was coming down with something. I called her pediatric doctor. I took her in and he wanted to have blood work done on her. So I took her to the hospital. That night she started to get a rash on her body. I was to take her back the next morning. when I got to the doctors office she was covered with a rash. Her doctor told me to take her straight to the hospital they would be waiting for us. I did not know what was going on. I thought it had to do with the brain tumor. In just a matter on hours she went from the rash in a regular hospital room to intensive care. Her fever was up and her eyes where closed shut. She looked like a burn patience. The doctors called in specialist. They did not know what to give her or what to do. They thought she had Rocky mount spot fever you get from a tic. All this time her eyes where closed and she could not eat. Finally they said she had Steven Johnson Syndrome from the Dilatin. She was allergic to it. They stopped giving it to her. The doctors at the hospital said that it was the worse case at that time. They had not since anyone with Stevens Johnson that bad. They give her a GI treatment. I waited for it to work. The eye doctor had to come in everyday and put drops in her eyes three times a day and I had to hold her still. She cryed every time. She lose 14lbs, she only weighted about 60lbs before she went to the hospital. Everyday I had to give her a oatmeal bath to try and help the skin. The antibiotic treatment did not work and the doctor said her immune system was gone. That if she caught a cold it would kill her. She only a a 10% of living. They had to give her the treatment again. I almost lost her twice. Finally she started to get better. Opening her eyes after two weeks. It took lots of prays and the support of my family to help us through this ordeal. She came home and since we have had to deal with ADHA because of the tumor and she now has dry eyes and cannot produce moisture anymore. She uses drops everyday. The tear ducts are damaged and she has some eyelashes that now scrape her cornea. Not using her eye drops all the time is now causing the blood vessels to grow over the cornea. Her right eye is the worse. She has cyst under both eyes now. The right one her doctor thinks is more than one cyst. She is going to have surgery in April to remove the cyst and the eye lashes. She still goes every year now for a MRI and to the cancer center for her check up. She is doing great. She is truly a survivor and a blessing to me. Amber is now 13 years old and a happy teenager. We still do not know all the effects from the Stevens Johnson. The doctor said what it was doing on the outside of her body it was also doing on the inside. It took time for all the blisters to heal and her to be able to return home and school. She is in the 7th grade and doing well. Please keep Amber in your prays as I pray for all that have had to go through this experience. I wanted to share Amber's story in hope of helping other families who are going through this to know that they are not alone. I thought I was.

Name :: Amy       

Story ::    At the age of 26 my new husband was thrilled to take me to my first concert to see the band Yes. At the time I had been cooped up for a long time because my arthritis in my knees and hips had been acting up and I had been put on Celebrex to help loosen my joints again. I was taking Aleve for the pain and had a lifetime history of allergies to shellfish, so I kept Benedryl on hand at all times.
Shortly after grabbing a soda and a large pretzel, we sat down for the concert 3rd row, center stage. 10 minutes later my ankle began to itch, but since it was an outdoor concert, I thought I'd been bitten by a bug and dismissed it. The irritation became worse and in just a few moments my husband was scratching my calf, while I furiously dug at my ankle and foot. I was so distracted that I didn't even notice the band come on stage. Before the first song was over, both my feet were huge hams and my legs were on fire. My hands began to swell and my husband picked me up, still not wanting to leave over a silly allergy, and carried me to the curb of the parking lot. Standing was sheer torture, but I wanted to keep a brave face. I've been through some very severe allergic reactions, but this was very different and I didn't want to frighten him.
I asked my husband to take me by his mom's home so I could grab some Benedryl. In the 10 minutes it took to get there, my lips were 4 times their normal size and had turned a sickly orange color, fortunately my throat was still ok, so I asked him to drive us home. Home was a 2 hour drive away. When we arrived, I was carried in and put to bed. I took 3 more Benedryl, a total of 6 now, in the hopes that it would help my now swollen ears, nose, lips, and extremeties. A few hours later my eyes were swollen shut, my swollen ears, nose, lips, and cheeks made me an unrecognizable monster and I had a rash covering my entire body that looked like I'd been dumped in a jellyfish tank. My husband called our doctor and long time family friend and he bundled me up and shot out the door with me. I could tell my little hubby was terrified of losing me. This had progressed so quickly in just 6 hours, it was amazing.
As soon as the doctor walked in, he knew what was wrong and was amazed. This crusty old doc had, fortunately, seen a case of SJS when he was in med school, over 20 years before. He gave me meds to help counteract the Benedryl's side effects, and gave me massive doses of 3 different steroids, and assorted other meds to make me more comfy. He explained that I had SJS and that it was very seriouse, but he had no idea of how bad it would get. We had gotten there fairly soon after the reaction began and there was so little known about it, that we were to hope for the best. He gave us the run down on things to watch for and sent me home. By this time, the swelling was subsiding with the help of the steroids.
The first 3 days or so, I just laid there miserable beyond belief. My skin was on fire head to toe, literally! I couldn't stand to be anywhere but my bedroom because it was the only room with dimmer lights in it. Living in Arizona, the sun and light is impossible to hide from. By the end of the 4th day, I felt well enough to sit in the tub and relax. When I started washing my arms and legs, I was shocked at the layer of skin floating in the water! Worse still, my hair was falling out in chunks. Having been a former model and newly married to the love of my life, I freaked a little, to say the least. When I got out of the tub and looked at myself in the mirror, I was hysterical. I looked like I'd spent two days in a tanning bed and roasted myself! It was pitiful, I cried, but that brought on it's own incredible pain from my salty tears hitting raw flesh.
Our doctor was really good about checking in on me and telling me how very incredibly lucky I was. How could he dare call this lucky??!! We were given a website address on the disease and after seeing the damage it could do and what others were going through, I finally understood. I was amazed that I could still see and hear, considering how badly damaged my skin was. My next visit w/the doctor, we went over the meds I had been taking, but we were never really able to find the specific culprit. I also learned that there was a slight possibility that I could have passed this proclivity on to my children. Several years before, my oldest son had developed a similar, but less severe, reaction. At the time, he had been ill w/strep throat and was on several antibiotics. When his rash broke out, I was told he had Scarlet Fever and the entire family was put into quarantine for two weeks. I remember how his skin would slough off in my hand during his bath and for weeks after he would cry incessantly until I took him inside and turned all the lights off. We will never really know what happened w/my son, but I watch him like a hawk and I'm paranoid about all new meds.
It's been almost 5 years since my life was turned upside down. My husband and I are very conscious of treasuring every moment we have together. The scars have pretty much faded away, but when I get too hot, I turn blotchy and very uncomfortable. We have moved from my beloved desert to a cooler, more friendly environment in the midwest. I still have problems with photophobia and were perscription shades when I'm out. My hair has mostly grown back, but is much thinner now.... small sacrifice for the second chance I've been given. I now work in an office and my outside activities have been curbed a bit, but I refuse to let this interfere w/my happiness. I only pray for all of those out there that also suffer through this. I have to say that I also live in fear of another recurrence. I refuse to eat out, take only minimal meds when necessary, and never take anything that I've not had before; however, I did drop the Celebrex.
I only hope this helps someone else. I thank God everyday that my doctor knew what to do so quickly. I believe it was his accurate diagnosis and meds that saved me from getting so much worse. I make sure that all of my health care providers are aware of my SJS and encourage them to read up on the disease. It's the only way to help others from being misdiagnosed and suffering so much more than they need to.

Name :: Joseph       

Story ::     Well, it started while I was in my 9th week of Basic Training for the army. It started out with pink eye then 2 days later I started getting rashes that soon turned into blisters. I was flown to a Burn Center in San Antonio for 1 month. I was in ICU for 2 weeks. I did not get it as bad but still, little can do alot of damage which it did me. 6 months have now passed and I have dry eye syndrome but the good thing is I dont need mucous membrane graphs on my eye lids just yet. i was 65% open skin. my mouth, eyes, skin, everything was in great pain. I did not need a breathing tube either thank god. Please e-mail me or whatever. I am still alive and in the middle of a Medical Board (medical discharge) for the Army. I guess it just wasnt ment to be. They still dont know what caused it which scares me even more because i dont know what to stay away from.

Name :: jodi godfree       

Story ::    about 3 years ago i was diagnosed with epilepsy, i had taken many differnt types of medication to stop having seiszures, but nothing seemed to work, until i started taking tegretol(carbamazipine).my seiszures were under control!about 2 months later, i came down with a really bad case of flu,i tried everything to get rid of it but it just seem to get worse, after about a week of this i noticed a really bad red rash on my neck.i thought it would go but it just seem to get worse,my face started swelling up and huge blisters started appering,my face looked like a monster,no-one could even recognise me, my face was that swollen and eyes were bleeding my mouth was full of massive ulcers and so after a week like this, with it just getting worse, i went to the doctors, he didnt have a clue what was wrong with me and sent me to the hospital.well alot fat of good they were, they was as bad as my the time they actually decided what was wrong with me, my face neck and back was so bad i felt like i was dying!it was tegretol that had caused me to get sjs! well its been a year now and im all better and luckely ahve no scaring,fingers crossed i never have to go through that again, i wouldnt wish sjs on my worst enemy!

Name :: Michelle S       

Story ::    Hi my name is Michelle and I had sjs when I was 18 years old.(1989) I had a UTI and took bactrum(sulfa) for treament. I took the whole precription 500mg for 10 days I think. Anyway I didn't feel so good. I was hot and my eyes were bothering me. I thought great I have pick eye and acne. But that night I couldn't sleep my face was hot and red and it seem to spread to my back and neck. At this point my eyes started to hurt. That night I did not sleep. At around 6am I took a cab to the hospital. I just knew something wasn't right. I put on some dark glasses and told my my mom I just wanted to be seen. At the ER they took my temp it was high 104. My face was now bumpy and the rash spread to my feet and arms everywhere. The kicker is that I still had my UTI. I was admitted and several doctors came in to see me. At this piont they did not know what was wrong with me. Finaly a doctor from Boston said sjs. Thank god someone knew. I was being tested for eveything. By the second day I couldn't see anymore,my rash was now blisters and I was in so much pain. I was sent to Mass General Burn Center were I remained for a month and a half. I had two blood transfusions one of those breathing tubes,iv's and a freeder tube.(Sorry not sure of the name of it) I had pig skin stapled to me and silver nitrat to protect my skin. Then they wrapped me like a mummy.I slept in a room with plastic everywhere. It is kind of foggy because I was on heavy meds.(morphine). My family was told that I might not make it. Once it stopped and I started to heal things went quite quickly. I never did get to SEE my doctors face. I think I was lucky to live in the Boston area. I had the best care and top of the line dotors. I still see a eye specialist in Boston. His name if DR Stephen Foster. look him up he is awsome!! I can see 20/20 sometimes,I have dry eyes. My skin looks good you can bearly see the scares.SUN SCREEN!!!DON'T BURN YOUR SCARES. My nails however will never be the same. luckily fake nails are in. Now I have a 8 year old boy and live a normal happy life. I have a great doctor that looks up all my RX before she write the sript. That is my story I hope that it helps someone out there. Feel free to contact me.
#1. photos of my freinds and family even though I couldn't see them. Family, friends and even the nurses would come in and talk about them.
#2. lots and lots of company laughing ,talking and noise
#3. the radio, music, books on tape
#4.ICE CHIPS!!!!

Name :: Tamara Joiner       

Story ::    I am a 28 year old SJS survivor. I was diagnosed at the age of five after being prescribed phenabarbitol for seizures. As a result of the illness, I lost every hair on my body, all my fingernails and toenails, had a fever of 108 for a total of three days (threatening brain damage), severe damage to my eyes, and extreme weakness and fatigue. I don't remember a lot of the things that happened, I think God erased the worst of it from my memory.
But, thanks to my family, icluding a doting mother and father and an aunt who is a physician(and GOD, of course!), I am alive and well today and have a son of my own. My hair and nails all grew back (except the big toe on my left foot), and I have 20/20 vision (my aunt treated my eyes 3 times a day with a solution she came up with)!! I only have some scarring on my neck, back, stomach, and posterior. From my experience, it seems that the areas of my body that have been continually exposed to the sun are now the least scarred. I would like more information, if possible, and/or suggestions for clearing up the scars, but I now look at my scars as trophies of victory! Growing up, I had some problems with being teased, but I came out just fine, and I have a VERY healthy self-esteem!:) I was so happy to find this site and would like to be added to the mailing list if there is one. Thank you!

Name :: Danyelle Dodd       

Story ::    I want to share my story because I am so very gratful for this site at this moment! I have a 13 1/2 month old son named Steven. Steven had his one year old shots on March 18th. We gave Steven Children Motrin. All has been great! Beautiful healthy little boy he is. On the evening of March 24th I notice a rash on Steven. But I don't get excited because he as eczema and it flares up at change of seasons so I just treated it as usual with cream. On the night of March 26th, Steven wakes up red, a severe outbreak, red eyes and scratching terribly. I send my husband out for benedryl. We gave him that every 4 hours. On morning of the 27th we take him to his doctors office but didn't see his doctor because it was a Saturday and we had to see the doctor on call. Not only one doctor, but two seen him because the one had no clue. They finally said chicken pox, and prescribed him with Durcef (antibiotic). Stevens eyes continued to swell and he continued to itch. He was miserable. The benedryl counteracted with him and he couldn't rest day or night. On Sunday we couldn't take it anymore still not know what was wrong with him or how to treat him properly. We then take him to LaBonheurs Children Hospital in Memphis to the ER. Again " Clueless" and not one but TWO doctors again. Then they say Scabies. Yea...OK...they prescribe him with a stronger type of benedryl call Hydroxyzine for itching, and an ointment for his eyes called erythromycin. Stevens eyes are even swollen worse by the time we get home. We just can't beleive this they are almost swollen shut. Monday morning the 29, 2004 we take him to his Doctor. He name is Elisa Benaim. As soon as she looked at Steven she knew exactly what he had. She brought out books and shared time with us. She put him on a steroid called prednisolone, and eye drops called Patanol. What a blessing she is to me as I read these stories. Steven has taken those now 24 hours ago and he is looking remarkable. We see again tomorrow. Every 2 days until he is healed she said. But I have so many question for her tomorrow. My main question is: If now that we know what this is, is he always going to be ok? If he has another breakout can we just treat him early and he'll be fine or is it a chance it could get much worse on him? If anyone reads this and has reaccurances, please email and share your stories with me. He is so young, and I have deep fear of what is to come of this. I came home immediatly and jumped on the net and found this site and it has helped me more than anyone could know. Blessings, The Dodd Family

Name :: Tammy      

Story ::    My mother has SJS/TENS, she is in her 4th week of this terrible sydrome. On Satruday, 3/6/04 she had a fever and some sores on her mouth, we thought she was getting a cold or flu. On Sunday she did not look good at all so we decided to take her to the ER, where they sent her home with conjuctivics and stomitis and told us to let it run it course. Through this time she got worse with blister all over her body on 3/10/04 we took her back to the ER, where she was admitted into the hosital and after many doctors had seen her they did not know what was doing on, until they had a meeting and came up with SJS and decided to take her to the Maricopa Medical Center Burn Center. On 3/11/04 she was having trouble breating on her own from the blisters in and out of her body, down her trach area,thanks to god not in her lungs, she did have to be put on a venalator and told us that she had the TEN case and she had a 50% chance. On 3/30/04 they remove the venalator and put a trach in. Today she has come a long way and doing good from 31/2 weeks ago, we still have a ways to go. All due to ETodolac that had been prescribed due to a pain in her shoudler. My mother is healthy 62 years old woman and retiring this year. She comes from a loving family, 5 children that 4 out of the 5 live here in the same town (Phoenix, AZ), 12 grandchildren and a loving husband (our dad). Its really been tuff and has been a long road for all of us and we had never heard of such a thing. Thank you for reading my story and if there is anyone out there that has been through this and can maybe tell us a little of something or the next step please do. We are all hoping for our mother to come home soon. WE BELIEVE OUR PRAYER HAVE HELPED.
God Bless and keep Charlotte (our mother /wife) in your prayers. Tammy

Name :: Cashawna       

Story ::    My best friend has been diagnosed with SJS 2 years ago. At first, the doctors said it was the Chicken Pox. But 2-3 weeks later they realized what the problem really was. Since then she has been hospitalized 10 times or more. She's currently in the hospital now. I think she has a very severe case and I'm scared to death. I love her very much and I feel like there has to be some form of treatment that they're overlooking because nobody should have to suffer the way she is. She's 28 years old and a mother of 4 beautiful children. She has missed almost every major holiday because she's been in the hospital so much. She was in the hospital for her birthday which is a few days after new years. I keep hoping that she'll recover fully, but she's so weak. She's mostly blind now and she has a feeding tube and a colostimy(?) bag. You know the bag for her waste and that's only a few of her symptoms. She has scars from the blisters, she's been in ICU in a medicated coma because her potassium levels dropped and her heart rate was irregular. She pulled through but has remain in the hospital. As soon as she's about to be released, she gets a fever that nobody seems to know how or why. She's being treated with antibiotics for the fever. She also does physical therapy when she isn't so sick and weak from fever & pain. I have been by her side throughout this whole experience but lately it has taken a toll on me mentally. But, I'm sure that what I feel is nothing compared to what she's going through. I've been on line looking for a hospital that might have more or better experience with dealing and treating SJS patients. I love my best friend of 15 years with all of my heart and I want to help her. Can anyone guide me or get me in contact with any kind of helpful info.

Name :: Elizabeth Sicotte      

Story ::    I'm 21, Canada, mtl
From all i have read, the only thing i can say, 4 years after my hospitalization, Thank god i live in Canada cuz we have Medical inssurance. I can only imagine how bad it must of been for those who had no help or medical support. take care

Name :: Gregory Allen      

Story ::    I was in the 2nd grade when I was diagnosed with SJS. It started with a sore throat that didn't go away. In fact, I kept getting progressively worse. My doctors were completely stumped for a long time and didn’t know how to help me. I do not remember much about the early stages of SJS. I do remember that I got very sick and that most sick kids didn’t have the symptoms I had or look as bad as I did. I remember getting almost weekly blood testing done to monitor my organ functions. I had blisters over almost my entire body and my skin was falling off in sheets. One blister was so bad that it covered almost the entire sole of my left foot. I was so weak my mother had to carry me into the doctor’s office because I was not able to walk. My doctor even let her bring me in the back door because I was embarrassed about how I looked, which was only made worse by the comments of the other kids and their parents.
I remember the day I was diagnosed with SJS, though I didn’t remember what the diagnosis was or even know the full extent of the diagnosis until about 7 years ago. By the time my doctors found my diagnosis, I was so far along that they told my parents not to expect me to survive, though I didn’t know this at the time. I was given only a month or two, if I was lucky. The fevers were getting worse, averaging 101-102 throughout the day. My fever spiked up to 105 at times. My mouth was so cracked and sore that my mother had to feed me with an infant spoon. Every couple of nights I was rushed to the Emergency Room to try and lower my temperature. I kept trying to do my schoolwork at home throughout my sickness; I missed almost three months from school. But, by this time I was so sick I couldn’t concentrate on it at all.
The next thing I remember is my doctors trying several different antibiotics and in increasing doses. At the time I didn’t really understand why or what was going on, beyond the fact that I was sick and had to take my medicine. Only recently I learned that my doctors told my parents that they were going to try higher doses of Penicillin to see if they could break my fever and try to get my symptoms under control. My parents were also told that I was only a couple of days from hospitalization and that if I was admitted I most likely would not be going home.
Somehow, for some reason, my fever suddenly started to subside. My symptoms started to become less severe and slowly I started to play with my little sister again. A week later I was well on the way to a full recovery, which I did eventually make. I am now 27 and have a family of my own. I have never had any symptoms or signs of SJS since my recovery in the 2nd grade. In fact, it was not until I was married and asked my parents a lot of questions about when I was sick that I learned most of the details of my illness. I didn’t even know the name of it until today, April 20, 2004. Until my recent discussions with my parents I didn’t even know that SJS could be fatal or that I was not expected to survive. I am by no means an expert on SJS, but I do know there is hope out there for anyone suffering from this.

Name :: Oliver      

Story ::    My brother was only 47 yrs old when he passed away due to SJS. I am not even aware of this syndrome until my brother was diagnosed with it. He suffered for two weeks with blisters covering about 90% of his body. He also had problems with his kidney and lungs. I feel the pain of those who lost a loveone and for those who are survivors of SJS. I do miss my brother and I hoped that he could have survive to tell his story.

Name :: Laura Campbell      

Story ::    It has been very interesting to read about SJS on your website. In 1968 I suffered from SJS when I was just over a year old. I was teething at the time and my mother, in order to ease the pain, asked the doctor for help. He prescribed liquid PANADOL. A rash appeared on my hands which then spread over my entire body like measels. According to my mother (who is quite vague about some of the details) I vomitted all of my food and it got the the point where I shed so much skin, you could almost see my entire insides. I was put on antibiotics but these just aggravated my condition. I absorbed no food as the lining of my intestine had come away and so anything I ate, my body rejected immediately, by throwing up or shot straight through me. I lost an alarming amount of weight. I was taken to the local hospital in Swansea (Wales, UK) and put on a drip but the paeditrition did not know what was wrong. I also seemed so unhappy, the doctor advised my parents to take me home but I deteriorated rapidly. My parents drove me back to the hospital thinking I would die on the way. The doctors decided I would not make it to Great Ormond Street children's hospital in London so ambulanced me to a hospital outside Cardiff (Wales). There I was given a series of tests, from lumber punctures to drilling into my thigh bone to extract bone marrow. I was fed through a nasal tube and kept on a drip for 3+ months. Because my body was so weak my veins rejected the needle so they had to keep trying to find new veins. Eventually a specialist worked out the problem was SJS and I was given CORTIZONE which 'cured' me and very gradually over a year or so I recovered and was given small amounts of Sainsbury's chicken pate in a jar to eat which was the only thing my body could take. Thankfully I have a few memories of the experience. As a child I was found to be stone deaf in my right ear which we think was a result of glue ear from all the drugs I was given. I have lived with partial deafness and I am left with a few war wounds - scars on my ankle from the drip and resulting sores from having my foot positioned in the same place for long periods of time. I have cracks either side of my mouth, very clear veins and I suffer from a great deal of colds and flu as I imagine my immunity is shot to pieces. Back in 1968 there were few known cases of SJS and it is great that there is now more awareness of the condition.

Name :: Renee Harrell      

Story ::    My 47 year old brother died last Thursday April 15, 2004 from TENS. He was taken to Zale Lipshy Medical Center in Dallas Texas March 15, 2004 where he underwent numerous "tests" and drugs because his diaphragm was paralyzed. They peformed a tracheostomy March 22, 2004. He developed a rash before he was sent to HealthSouth Rehabilitation Center in Dallas Texas March 29, 2004 for rehabilitation to learn to breathe by alternate means. His rash became worse, he ran a fever and swelling started. He developed blisters by April 7,2004. His Neurologist was made aware of this rash as soon as it started at Zale. He didn't pay attention. Every day, my brother's wife told the doctor it was getting worse.
It wasn't until the blisters broke out that the doctor did anything. He then sent him to a dermatologist at St.Paul Hospital, Dallas TX who then sent him to Parkland Burn Unit, Dallas TX. It was there that they told us he had TENS and most likely he wouldn't survive and he didn't!
Why did he have to die? Could this have been prevented early on? Can it be stopped in the rash stages with proper treatment? Please someone tell me something...the doctor surely didn't! I miss my baby brother...

Name :: Jan Bender      

Story ::    Last on Memorial Day 2003, my son Wyatt who was six years old at the time came into our bedroom complaining his neck hurt. Immediatly I thought of meningitis. I tried to get him to put his chin down to his chest. He wouldn't do it. He said his throat hurt. He was running a slight temp. He had strep on his tonsils three times previous since March, so I kind of figured it was that again. Everything was closed so I got him in to a clinic in town the next morning with the Physicians Assistant. He said it was a "classic" text book case of tonsilitis. Since he had been on other antibiodics, (Amoxocillian) which never seemed to knock it out. He prescribed Augmentin. We got home and I gave him a dose of it. An hour after he took it he threw it up. I called the clinic and they said "oh, its in his blood stream after an hour. Keep giving it to him. He threw up his night time dose also. In the morning, after a restless night, when he woke up his lips were swelled up and bright red. the palms and soles of his feet were also red, and he had red (yeast infection) looking rash on his groin. His eyes were red and had pus in them. He complained his throat felt funny. In his mouth was a olive green colored muscas on tongue and coating the inside of his mouth. I took a clean cloth and wiped what I could out. I never seen anything like this. He's my fifth child. I called the clinic because he was still vomiting. The PA said give him peptobismol before the antibiodic. That didn't sound right to me either. The med sheet from the pharmacy said expect voimiting and diarrhea for the first 2-3 days as the body adjusts. He started having diarrhea. I called the clinic again. The PA said, just keep doing what you are doing and if he is not better by Friday. (today-wednesday), bring him in. He was up all night with the v. & D. He couldn't get comfortable. I kept trying to get him to drink fluids. And I kept waiting for the fever to break. He was hot then he was cold. My gut feeling told me this wasn't right. On thursday he was very lethargic, and I thought his color was yellow. I called a friend of mine who is the employee health nurse at the hospital where I used to work and she said take him right into the ER. My daughter went with me. They seen him right away, and pulled him into the ER room. He was in renal failure, severly dehydrated! I was numb. The doctor yelled at me for not bringing him in sooner. My daughter told him I was just following what the PA had said. I should of trusted my gut instinct. I got a hold of my husband and Wyatt was taken by ambulance to Saginaw Covenent, then transferred to Mott at U of M in Ann Arbor. It was the worst experience we've ever had. They spent several hours in the ER stabilizing him. All he wanted to do was go home. But once the IV fluids were put in his labs started to come up slowly. (baby-steps) He was put in ICU. They thought it was either Kawasaki Disease, Steven Johnson Syndrome or a toxic shock syndrome. They treated him for Kawasaki's with IVIG gamma gobling and high dose aspirin therapy. It didn't bring his fever down. His mouth was a mass of sores, inside and out. He could barely open his eyes because it hurt too much. They were swollen and and had pus in them. He started getting a rash on his arms and chest. They did a spinal tap to rule out meningitis. Thankfully, it was clear. He had every kind of doctor looking at him. They finally started steriods. That enventually took all the inflamation away. But, He was having panic attacks where he couldn't breath. He had to be put on a ventilator with a chest tube, because he had so much fluid around his lungs. His heart rate and respirations was so fast. But the ventilator and chest tube worked and he slept.He had a feeding tube put in and they also put a stint line in because of his veins were so small. He had to have a transfusion because his red blood level was low. It made a big difference. It was like riding a vicious roller coaster for a while. He spent 10 days in the ICU and three on the general floor. His fingers started to peel and also his toes. They thought he had Kawasaki's so he would have to see a cardiologist in six weeks. We got to take him home. It took awhile for him to walk and get his strenght back. Like all summer. He was in diapers for a while. I was just so grateful and am thankful to have him. He was on a tapered dose of steroids and was always hungry. Got him into a different doctor who did the follow up and the labs which all eventually returned to normal. He lost all the skin of his palms, soles of his feet, anywhere he had the inflamation/rash. But new skin replaced it. We went to see a pediatric cardiologist who did and Echo and EKG. Everything was normal. The doctor said it wasn't Kawasaki's, because as sick as he was, if it were Kawasaki's there would of been heart damage. His heart was perfect. He said he had STJ and under no circumstance give him any pennicillan or sulfa. We thought that was the problem all along. It's almost a year since he went through this and he is (thank the dear Lord) fine, healthy wild little boy. He still got tonsilitis which they treated with Bactrin? No side effects. We did have his tonsils and adneoids out two week ago and he is fine. No more snoring and hopefully no more strep. This experience changed our family for ever. We are so grateful to have Wyatt. I just have to listen and believe my gut feeling more. Doctors and (PA's) are capable of mistakes. Some awful mistakes. Never be afraid to question them when you aren't sure of what they are prescribing. People should be made more aware of STJ, and its sometimes deadly endings. Thank goodness we had the out come with our son that we did.

Name :: Alejandra Pinzon Lara      

Story ::    Soy una madre de un joven que ahora tiene 15 años, cuando tenía aproximadamente 2 años y medio, sufrió esta terrible enfermedad, afortunadamente es uno de los sobrevivientes de este mal, cuando tenía 2 años se de diagnosticó epilepsia y se le ordenó tomar "epamin" el cual desencadenó la reacción que provoca esta enfermedad, cuando se descubrio que tenía el síndrome, se le encontraron unos granitos detrás de las orejas y en las mejillas sin pensar la gravedad de su enfermedad, al día siguiente tenía toda su cara invadida de granos junto con los brazos y las piernas, sufría de fuerte fiebre y dolores que por su corta edad no podía explicar de que se trataba, el médico pediatra nos recomendó llevarlo con urgencia a un hospital, siendo atendido en el Seguro Social en donde fue internado porque no había médicos (eran días de fiesta) que pudieran determinar que era lo que tenía, el bebé permaneció "dormido" durante tres días, solo medio despierto para poder tomar su biberón pero sin que despertara totalmente, cuando regresaron los médicos de sus vacaciones, lo atendió un neurólogo quien diagnosticó el síndrome, igualmente lo atendió un dermatólogo quien me pidió permiso para tomarle fotografías puesto que era el primer caso que se les presentaba y necesitaba material para enseñar a sus alumnos, por supuesto que se lo permití porque no quisiera que le sucediera a otros pequeños. Lamento no poder contarles que tipo de medicamentos tomo mi bebe puesto que únicamente vi que le pusieron suero en vía intravenosa. A la semana de estar hospitalizado lo dieron de alta puesto que había mejorado notablemente, sólo me dijeron que no podía asolearse por las lesiones que tenía en la piel y que tuviera mucho cuidado con las cosas que comía o tomaba para evitar que recayera. Cuando su pediatra lo revisó comentó que era un milagro puesto que esta enfermedad es fatal en la mayoría de los casos y que los pocos que sobrevivían quedaban con lesión cardiaca, afortunadamente mi hijo ya tiene 15 años y no padece de ninguna lesión cardiaca, inclusive superó su epilepsia. Gracias.

Name :: sharon bibb      

Story ::    My name is sharon bibb I was attacted by steven johnson synrome in november of 2001 and I have been fighting for my life every sence.I had spend the last 4 months in remission up intil about 2 weeks ago and unsure of how to explaine to my now soon to be 13 year old daughter that I am not ok anymore.I find my self crying alot and hidding in my home because the sun light hurts my eyes and or I am to tiered from the medication or from being up all night long because of the medication. I never thought that a few blisters and soares alot of bliste5rs and soares would take there hold on me but it has. There are days when I fill like jummping off the edge of life because i fill like I did something wrong by getting sick. and I don't know how to over come the pain and the new obsticals that awaits me.
I try to explaine to my doctor what my illness is because he is nit familure with it and he refuses to reserch my illness on his own. Having state medicade limits me to the kin of treatment that I know that would benifit me and my family, and I am scared and I do not know what to do? pray for me as i pray for you all as well. I am currently writting this letter at the public library here in norwalk ct because i don't have a computer at home.People are loking at me because I have tears steaming down my face and to them I look like a scary monster right now.How come so many Doctors ar not familure with this ilness? and why isn't enough americans more awear of this disease as well?.
How can I make people in my community aware of the wrning sings? How can I pervent this from happaing to my child like it did me?

Name :: S L Vaughn      

Story ::    Samples of Oxytrol patch were supplied by an Austin, Texas, urologist and applied on Jan 10, 2004. On Jan 12, slight soreness of mouth and tongue was noticed which steadily in- creased over the next few days. Discontinued the patch 2/27/04. Samples of Dextrol-XL were then given on 2/4/04 and by the end of Feb, my mouth and tongue were so sore and dry I was unable to eat. Last dose of Dextrol 2/24/04. I had lost 4 pounds by 3/8/04. Urologist unable to advise any relief. Saw primary care physician on 3/3/04 who suggested zinc and an estrogen patch neither of which seemed to help. Also told my gynocologist at my annual check up on 3/11/04 who could offer no solu- tions but did suggest I see an Ear, Nose and Throat specialist. 3/26/04 did just tht and he mentioned a number of things in- cluding 'sore mouth syndrome'. He did prescribe an anti- virus medication and an anti-fungus mouth wash to be taken for 10 days. The following week 4/3/04 before the medicat- ions were half gone, the symptoms increased for 4 days in which I was in severe pain. Since then, they have gradually abated someway, altho today, 5/1/04, my tongue and mouth are very sore, altho not as severe as several weeks ago. Both the ENT and the urologist are doubtful the Oxytrol patch caused the sore tongue and mouth. However, since the problem began almost immediately after application of the patch and was, in my opinion, compounded by the use of the Detrol, I am not convinced that I did not have a reaction.

Name :: Edgard Deveaux      

Story ::    I am from France and recently won a major law suit against the drug company. I developed SJS at 16 years old from bayrena (sulfamide). My phone number is phone number is :00 33 470 05 36 72

Name :: Richard      

Story ::    My wife took phenobarbital from age 16 to age 55 for seizures.. From age 45 to 55 she suffered burning and itching in her left arm. Then, her right arm. Sometimes, on her scalp. It was so bad she would tear at her skin creating scars. We went to lots of Doctors. NO ONE KNEW WHAT THE PROBLEM WAS. So they did nothing. They thought she was nuts because she had no visible rashes for them to see.
She went to a homeopathic doctor who took the time to study her case. The doctor concluded that the cause of the problem was the phenobarbital and that my wife should stop taking it.
She switched to topomax. As low a dosage as possible. She is seizure free. And her burning and itching eventually, after many months, subsided.
NOTE:  It is clear that she suffered from SJSyndrome even though she did not show visible rashes. Don't let the lack of a rash fool you or your physician.
Clearly, anti seizure medicines, especially the older ones like Phenobarbital, and most sulfur drugs cause SJ Syndrome. Topomax is a new drig, relatively speaking. We will watch her condition to see if it reoccurs.
Finally, your skin is an organ. If you have something in your system that your body considers toxic, it flows through the blood. Your liver cleanses it out. So can your skin.

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