Name:: Michelle Bagan       

Story::    When I was ten years old I had began wheezing, at that time I was diagnosed with asthma and given Theophylline to control the wheezing. After several weeks, the medicine wasn't working, so the doctor I was seeing increased the dosage of Theophellin and also prescribed Alupent and Theodore. I was not getting any better and on New Years day while fishing with my family I began to have a seizure followed by cardiac and respiratory arrest. I was life flighted to a hospital 70 miles away, where I awoke in ICU after being in a coma for nine hours. The doctors who examined me said that I was epileptic, that an allergic reaction to the asthma medications was not possible and I needed anti-convulsants. So, I was put on Phenobarbital and Dilantin (while still on the other medications). I was out of the hospital for a week, I was still wheezing regularly and started developing hives. I was itching everywhere, and almost felt like my skin was on fire. Another doctor prescribed me Benedryl for the hives and Dimetapp for the runny nose I had developed. I became lethargic and the hives completely covered my body, they had turned purple with a red rash on top. I also had blisters inside my mouth and nostrils, making it hard to eat and breathe through my nose. My eyes bulged and a capillary in my right eye burst causing it to bleed. My parents took me to the emergency room, and I was seen by a doctor I had visited previously. He didn't know what was wrong with me. I was given Epinephrine and Cesphrine, because my breathing became labored as if I had began to have an asthma attack. My parents thought I was dying and begged the doctor to do something, so he had me re-admitted to the hospital I was taken to initially. There I was examed by 28 more doctors, until after a week I was finally diagnosed with Stevens Johnson Syndrome. They determined that the initial incident was anaphylaxis, not epilepsy, and I was taken off all of the medications. Within a matter of six hours the hives had cleared. I was given Breathene for asthma maintenance and have not had to use that since I was in my teens. At thirty-two, I am left with a scar on the inside of my right eye from when it bled, however, my eyesight was not damaged. I still have to be very careful of medications, I am currently allergic to twenty-three, everything from Penicillin to Aspirin to Percocet. It always begins the same, I take a medication and within a couple of doses I begin to react with intense itching and red blotches that develop into hives. I have to stop taking it and add another medication to the list. What is more difficult, is that sometimes it will happen with a medication that I have been taking for a while, or one that I have taken previously without incident. Never knowing when I will react is a little scary; though I am fortunate to have what I feel is an excellent primary physician who listens to my concerns and reacts quickly if a problem develops. Recently, I was in the hospital and while admitted I was cared for by a physician that has a special interest in Stevens Johnson Syndrome. I had not met anyone before who knew as much as she did about it and I asked her as many questions as I could think of at the time. Since being released she has sent me a lot of information concerning Stevens Johnson and your foundation. I am grateful that I was given a chance to meet her, regardless of the circumstance. Thank you for providing this resource to myself and others who need, or would like, more information about this disease.

Name::Kevin P. Conners       

Story::   I am absolutely blown away that there is still so little known about this horrible condition. I had Stevens Johnson Syndrom when I was 6 years old I am currently 35 years of age and have been consistently told by my family it was a miracle I lived. I have just found the SJS Foundation website, I'm ashamed to say that, once I survived the ordeal I never looked back until recently my sister told me about the website. In 29 years it appears the course of treatment has not varied although the mortality rate is much better. My mother passed away when I was 11 but I can only imagine, now that I am a parent, the horrible ordeal she witnessed every day every 4 hours holding me down so the nurses could change my bandages and having my last rights read to me (5 times). I would like to know more about my bout with SJS (which appears to be TEN after I have read more stories) but my father and mother have both passed away and my brothers and sisters really don't recall all the details. I'm not even sure what hospital in Philadelphia I was treated, my interest now is borne from my concern that there could be some hereditary reaction that I passed along. I just wanted to let you know your website was very eye opening, please let me know if there is anything I can do in the future to aid this cause. BTW...I don't tell many people of my SJS experience but when I told my wife of the encounter she had many questions. I assured her that my situation was different because it happened 29 years ago and SJS was probably not a Syndrom currently but just "something they treat now with a shot and your cured". I am in shock that the disease is still so disfiguring and deadly. Kevin P. Conners, Kistler Tiffany Benefits, 501 Silverside Road - Suite 108, Wilmington, DE 19809 302.798.5062 302.798.7917 Fax

Name:: Jennifer       

Story::    My adopted mother just passed away (Dec. 20,2002) from SJS. We had no idea what she was suffering from until the day before her death. However, we do know how painful it was for her. The sores covered over 70% of her body and she was being treated by a burn treatment team. We by no means blame the doctors but wished more had knowledge of the disease. Jennifer

Name::Richard Miller       

Story::    Hi I am 31 yrs old and contracted SJS from Halloween candy when i was 10. I live in Ontario Canada. I started getting a fever and very swollen glands around the throat area. I was hospitalized and my condition deteriated. Large skin blisters and patches of rash formed over my entire body, but especially in the groin area and under the arms. I became comatose and lost all control of my bodial functions. On the 7th day the doctors did a biopsy and remove a flesh sample from my buttocks ( still have the scar). It was then that SJS was diagnosed. After anti-biotics the blisters and sjin markings disappeared and i was released. I did however lose about 27 pounds and have never ate Halloween candy again.

Name:: Dave       

Story::    My nephew was just diagnosed with SJS even though he's had a skin rash for quite some time.Along with my sister, I or any one in my family have never heard of SJS.We are very concerned.My nephew is only 14. His parents have enough insurance for a specialist but the doctor insists on giving some kind of steroid creme.The problem is that my sister was told that this could lead to lupus and my Aunt died from this lupus disease.Even though we gave this info to the doctor he still insisted on the creme.I don't know if there is something else we can do besides wait.Why doesn't the doctor take a blood exam and try to see for a better cure?I am on the internet and so is my sister trying to find out more on this disease or other options that allow us to go over the doctors head.I am trying to find out all I can through the internet and whatever else info is out there.We love my nephew very much and I feel he deserves better options than just waiting to see if the creme works.Any info you can send me will be greatly appreciated.I am at chitownmaleman@aol.com Thank you

Name:: James R. Pierce       

Story::    I am a 58 year old male with type 2 diabetes. I am taking several medications, which are glucophage,amaryl,dynacirc,demadex,levoxyl, and diovan. I had been taking the meds for a long time then duee to retaining fluids which was diagnosed as edema ,was given lasix and started itching severly. It got worse until I went to the ER. They gave me a meduldose pack which did nothing.Then I went to the dermatologist and recieved a shot and a lotion for dry skin. The dry skin was from the heat in my skin. No Doctor will believe that this is a reaction from my medicine. I know it is because I QUIT TAKING most of it and more or less control the itching to a minimum. My skin had turned to what looked like leather and spread all over my back, arms and stomach.I AM AT A LOSS AS WHAT TO DO.

Name:: Lynn Houtz       

Story::    I was six years old when I took Bactrim for an ear infection. I completed the whole bottle with no reactions. Then, out of the blue, I was covered in blisters similar to chicken pox, but much more severe. I was throwing up blood as the blisters traveled down my throat and attacked my internal organs and mucous membranes. My mother rushed me to the doctor, at which point he stated I had chicken pox and to return home to recover like any other child with chicken pox. Well, my mother, being a nurse, knew this wasn't chicken pox. I was admitted to Children's Hospital with an extremely high fever. Doctors from all over the country visited me to assist and observe this very rare disease. I had all the symptoms you read about in the medical journals. In 1982/1983, Steven Johnson Syndrome had only been encountered in CHOP two, maybe three other times. Those patients passed away. It was through the strength of my family and friends, church family and strangers' prayers that saved my life. Our faith in God brought a miracle to our family. I am 27 years old today. My tear ducts are closed over and I have tearing that can't be controlled. My eyelashes on my left eye turn inward in some areas, which causes irritation. They need to be removed daily. I had a lesion removed from my back that looked more like a birthmark. Other than that, I am living a life I was meant to live as a wife, a teacher, a daughter, a sister, and a firm believer that God heals the weak and sick, through His grace alone.

Name:: Jessica Combs       

Story::   My daughter Andrea, is years old and was admitted into Children's Memorial Hospital in Chicago on December 2002. Her condition started with what looked like pink eye, I think that's really what this was to began with. It started on December 10th, 2002. She was given a sulfa based drop to instill into her right eye, (THANK GOD it was only her right eye). Apparently, my daughter is allergic to sulfa. What a way to find out! But the doctor's have yet to decide what they really think of the situation. Her eye is still swollen shut and today is January 11th. It's been over a month, and she is still in pain, and the scar tissue in her eye between her eyeball and eyelid continues to reform itself over and over, even though they keep removing it . I am very thankful that she is only having the reaction in her eye, but I almost feel as if this is never going to end. I just want my baby back the way that she was. She doesn't eat well, or play, she just wines and buries her head in pillows all day long. Does anybody that had an experience with SJS have any stories or suggestions on the eye treatment that they were given?

Name:: Alisha Ringel       

Story::    I am 17 years old and my little brother whom is 3 (Skye) has contracted this syndrome and the drug from which he contracted it is still unknown to my family. He spent two days in our local hospital due to the rash and blisters. After the doctor's falsly diagnosed him and sent him home, we took him to a larger more advanced facility and spent another day in ICU and the Skye was again released and told that the "unknown virus" would run it's course. We were later informed that this was a case of Stevens Johnson syndrome. His skin is still falling off and he is in so much pain I want to cry when I see him. I know nothing about this illness and I am thankful for this site. Your stories were heart breaking and I hope my brother's doesn't worsen. Please contact me with any useful information that could put my mom and myself at ease. Thank you, Alisha

Name:: June Maharaj       

Story::    The Illness. In 1996 my husband’s job took our family (four of us) to reside in Manila, Philippines for four years. Our daughter was at Boarding School in Kent, CT and our son was at the International School, Manila. In October 1996 we decided to visit our daughter in CT, and the night before we left Manila our son and I took the first of our Hepatitis A (Havrix 1440) vaccinations. By the next morning on the plane I started with flu-like symptoms. Previous to this I had also been taking a cholesterol-lowering medication called Lipanthyl Fenofibrate 200mg. for 10 days. It was never determined which of these caused the reaction. For two days the symptoms worsened until I had high fever, a severely inflamed mouth and throat, very sore and painful eyes as well as bleeding genitalia. By this time we were staying at a Bed & Breakfast in the very tiny town of Kent, and I was so ill that I visited the School Doctor. Since the Doctor was not there I was seen by the N/P who thought that I had diphtheria. She gave me antibiotics which made me really ill during that night. So in addition to the symptoms which I was already having, I now had diarrhea and vomiting. Of course for over 24 hours I had not been able to eat or drink and I knew that my fever was very high (104), but at this point I felt that it was some sort of bad virus and that it would take its course and go away. By the next morning I was so ill that my husband took me back to the Clinic and this time I was seen by Dr Danisi, who was the School Doctor and who immediately diagnosed SJS. I have to thank Dr Danisi, since with his early diagnosis I was saved from a worse fate. I was immediately hospitalized at Sharon Hospital,CT where I was treated with antibiotics and steroids. I experienced the terror and pain of SJS and watched my family suffer through with me. We felt very alone and there was very little information about what I had. We were told that it was indeed very rare. After about three weeks in hospital I was able to travel with assistance and went home to recuperate. I found out that I was very lucky since I did not suffer from any of the skin eruptions and blisters typical of SJS but I recall losing many of my fingernails after, though I cannot recall exactly at what point this occurred. We tried finding support and information online, but there was very little so I was surprised when recently my son found all these references to people who also suffered the same fate.

Six months later to today: Eye problems By January 1997 I was healed and feeling fine. It appeared that apart from a couple ugly fingernails and moderate dry eye, my problems were over. Six months later, however, I noticed deterioration in my eyes. My eyes were producing a lot more “mucus”, and I was mopping up the soupy stuff constantly. My eyes always looked and felt inflamed and my vision became inconsistent according to the conditions at that particular moment. I went to doctors in Manila, then to Dr Stephen Pflugfelder at Bascom Palmer in Miami and was treated for dry eye. I also visited Dr Tsubota in Tokyo, Dr Dart in London and Dr Tseng at Bascom Palmer. All of these doctors treated me for dry eye, and it is only in July 2000 that Dr Pflugfelder realized that I had developed a very dangerous infection in my eyelids and that this was the real cause of my problem. I then visited Dr. Tse, an Ocular Plastics surgeon at Bascom Palmer Eye Institute who offered me the only permanent solution to my problem. Apparently the eyelids had healed after SJS with a lot of scar tissue, and inside the lids these tunnels formed which are lined on the inside with epithelial cells. These tunnels are now harboring a very dangerous bacterium called pseudomonas, which if it gets to the cornea, can result in corneal ulcers and blindness in 48 hrs. Because of the epithelial lining on the inside walls of the tunnels, there is no blood supply to this space which is where the bacteria are located, so antibiotics have had no effect. I have been on topical, oral and intravenous antibiotics all at the same time with no effect. I was taking as much as 40,000 mg of antibiotics intravenously until I became ill from the toxicity. The other interesting thing that I have been told is that if pseudomonas gets inside the blood stream it can go to lungs, kidney, brain etc and is often quickly fatal, but I have had this infection for about 5 years, and the doctors are amazed that I have had none of these problems. The tunnels have openings which empty into the eyes, and I express the pus from the upper left eyelid every day. The openings in the other lids are not as accessible to me, so I am not able to express from any of the others. But since I seem to be carrying around this “time bomb”, all the doctors that I have consulted concur that I should immediately get rid of the pseudomonas infection. Dr Tse has suggested that the only way to do this is to change the anatomy of my eyelids by getting rid of these tunnels. So the surgery proposes to "fillet” the tunnels and lay them open flat, and then smooth the area with a diamond burr and to follow this by transplanting mucus membrane from inside my cheek and amniotic cells to resurface the lid. Unfortunately this procedure, according to Dr Tse, has never been done before, so there is no way to predict the outcome or whether it can all be accomplished in one procedure, and of course the formation of scar tissue and infection etc are also all unpredictable. Dr Tse is a highly regarded OccularPlastics surgeon and he is non-committal about whether I will be better or worse off after the surgery since it is the first one of its kind. One of the risks is that I may end up with worse scarring and/or with more severe dry eye.

In November I went to Boston to the Mass Eye and Ear Infirmary and then to the Wilmer Eye Institute at Johns Hopkins in Baltimore. Both specialists who saw me at these hospitals agreed with the diagnosis and the surgical route as the solution. So the first surgery is scheduled for February 18th, 2003 and I have no idea what to expect. I am trying to have a positive outlook. I will have to continue my story after the surgery. Please feel free to write me at

Name:: Rebecca Nigh       

Story::    My son James, age 16, suffers from Stevens-Johnson Syndrome. He has had 6 outbreaks in the past 18 months - even with 6 outbreaks, varying in intensity and length of duration, we have not yet been able to identify the cause. With each episode, we are becoming more educated about this condition, but clueless in how to prevent it from recurrance in the future.

In James's first outbreak (October 2001), the physicians simply labeld it as a Viral Stomatitis and convinced us that "it just had to run its course". Only his mouth, nose and throat were affected with the lesions & uclers. James spent many days in the hospital - not able to drink, eat, speak or be free of the pain that accompanies this condition. He was on Cefzil, Ancef, high doses of Decadron steriods, Morphine, Demerol and multiple fever reducing meds (Tylenol, Acetominophine, Ibuprophen). Little did we know, but we were actually causing his condition to worsen with the use of the Cephlasporin antibiotics. This episode lasted 29 days - it dissappeared as quickly as it started... a mystery virus.

The second episode (late November 2001), only involved about 9 lesions in his mouth - we quickly put him on a Medrol Dose pack (steroids) for 5 days and remarkedly, the condition did not worsen. He remained symptom free for the next 7 months.....we thought the nightmare had ended and he had outgrown this "unknown virus". Episode #3 began on June 28, 2002 and resulted in 4 hospitalizations. This time, we sought medical care at Children's Hospital in Columbus, Ohio. It was at Children's Hospital, surrounded by a Team of specialists, that the Steven's Johnsons Diagnosis was reached. It was 52 days of pain, suffering, questioning and constant prayer for his survival. Not only was his mouth, nose & throat bleeding with ulcers, he now had involvement with his eyes, genitalia, and open lesions on his legs & arms. We initiated steriodal treatment immediately,lidocaine swishes to numb the mouth, a variety of antibiotics,fever reducing meds and pain patches, but it did not keep the condition from progressing. James tested positive for Mycoplasmic Pneumonia (a known cause of SJS) but tested negative for Herpes.....was it medication related or was there an organism living in his body that was causing this condition to recurr??? The final course of treatment involved long term Prednisone steriod use - 60 mg for 5 days, 50 mg for 5 days, 40 mg for 5 days, 30 mg for 5 days, 20 mg for 5 days and finally 10 mg for 5 days. In addition, there were 13 other medications including 3 types of eye drops, multiple lotions and creams, Tetracycline mouthwashes due to a secondary infection in his mouth, and pain meds to numerous to mention.

Episode #4 & #5, were mild - with each episode lasting only 2 weeks - involving only his mouth & genitalia. Episode # 6, began on December 10, 2002 and continues as of today, January 20, 2003. We have avoided Inpatient hospitalization and are managing treatment on an Outpatient basis. Resuming the high dose steriodal treatments has not stopped the condition - a preventative dose of Zithromax (just in case it's Mycoplasmic Pneumonia again) has not stopped the condition. Right now, we are reinitiating the 60/50/40/30/20/10 steroid treatments and a low dose of Acyclovir (an anti-Herpes medication even though he continues to test negative for Herpes). Will it work? Only God knows...in the mean time, we live one day at a time, suspicious of all meds, suspicious of all foods, and even suspicious of the air that James breathes....why, why, why??? Thanks for reading our story....we hope for an answer every day.... Rebecca and James Nigh

Name:: Teresa Wooldridge       

Story::    When I was 8 years old (1951)I was rushed into hospital and put into isolation for a month. I had blisters all over including the inside of my mouth and throat. I was sedated with injections during this time. Eventually my skin peeled and all my nails came off.My mother said that I looked like an old lady with shrivelled up skin and that I nearly died. I was diognosed with SJS. At the time I was told that only 4 people in the world had been diagnosed Three years prior to this I was on barbituates for Petite Mal. A couple of years later I was rushed into hospital again with a drug reaction to new medication. After reading others reports I wonder if this was actually a recurrence of SJS. I looked up this disease today because at the moment there is a bleed at the back of my right retina and the doctor said there are 2 scars there possibly from an infection.Maybe these are the result of SJS.My sight has always been minimal in the right eye Regards Teresa

Name:: DARIO DEMIAN CONDE       

Story::    Mi nombre es Dario soy de la ciudad de Merida Yucatan Mexico.Padeci SJS cuando tenia 5 años de edad(1983) y en ese tiempo nadie pudo precisar que es lo que yo tenia. Al parecer todo fue ocasionado por algun medicamento a base de sulfas para contrarestar una infeccioN.Hoy tengo 25 años y el sindrome me dejo daños en la vista. les escribo para saber si pudiera haber alguna opcion para mis problemas de la vista. A continuacion anexo unos datos que quizas les sirvan para orientarme: agudeza visual disminuida.HoyAV= OD=20/200(.) 20/60 OI=CUENTA DEDOS A UN METRO HAY SIMBLEFARON en AO.- SHIRMER OD=2/5 MINUTOS OI=0/5 MINUTOS Las corneas en AO con areas vascularizadas y en OI Nebula central como secuela de ulcera corneal. (Segun opinion del doctor Ermilo Sanchez Vega oftalmologo. Les agradeceria una respuesta sobre cuales son las posibilidades de algun tratamiento. Por su atencion muchas gracias. DARIO DEMIAN CONDE

Name:: Sonia Julien       

Story::    Dear SJS Support team, My name is Sonia Julien. I am from the Caribbean. I am 34 and had Steven Johnson Syndrome when I was seven. I was left with severe dry eyes and scarring of my cornea with a vision acuity of 20/200. I am currently seeking financial support to see ocular surface specialist, Dr. Tseng in Miami. I am wish you help in my fundraising endeavor. Thank you for your kind support. Sonia

Name:: Mark Hutchens       

Story::    Around 1978 or 79 I was in the service stationed in SanBernardino California on monday I woke up sick and reported to sick call, fever, nausea, etc, the doctor said that I had the flu, he gave me some pennicillan and sent me to baracks to rest for 3 days then to report back for follow up on wednesday. The following was told to later; I did not show for sick call on wednesday and the barracks Sgt was notified on thurs, at almost the same time my roommate came in found me on the bed passed out soaking wet. He got the dorm Sgt and they called the clinic, then they carried out of my room to hospital (it was across the street) my fever had been at that time at 104 to 105 and hard to control, the doctors did not know what was wrong with me, so I was sent by ambulance to March AFB to a the hospital they kept over night and could not figure out what was wrong, I had spots all over my body and in my mouth, temp run 105 to 106 and was controled by ice and the lowest they could get it was 104.7, on fri I was flown from there to Balboa Navel Hospital. I was in and out of consciousness from March AFB on. At Balboa the doctors worked hard to control this, and was sure that I was going to die, then placed into a private room my family was notified, then another doctor saw me that had not been there, and diagnosed me with Stevens Johnson Viral Syndrome. this was on saturday, by this time the blistering was so bad that they could not use ice or ice packs. The doctor had a special liquid brought in, between it the IV's he managed to gain control of it and start it into remission. On sunday I awoke still have some fever and blisters all over my body, I reached such high temps that my entire body was pealing, could not eat because of the blisters in my mouth and throat. The nurses started telling what I had gone through for the last few days, the doctor also told me later and showed me the paperwork. My body weight had gone from 225 to 130. By monday morn they moved me from the room to the ward, I looked so bad and lost so much weight that my parents almost did reconise me and the doctor said it still dont look promising for as body had so much damage. After seeing my parents I started fighting it over the next 3 weeks I worked hard as I could, got off the IV and theripy. In the 4th week the doctor said that there was nothing else that he could do, my parents had me released in there custody. The next 4 months I spent with them, I lost most of the outer layer of skin from my body the sores went away as as the skin peeled, my vision got better. I was placed on 2 months more leave, then I reported back to my base where I was on light duty for 3 months more then gradually back into normal work. Now here it is 2003 and I still have probelms. Doctors not knowing what causes them are afraid to say that this is connected because so little is known about SJS. Recently I have been fighting with the VA to get help but because so little is known about SJS that it is hard. My vision has always been affected every since this happened, Once you have this it is life long. I hope that my story will help someone else who is dealing with this, hopefully they will find doctors who can help. Anyone wishing to contact me can at the above address. WISH YOU ALL AND ANYONE WHO READS THIS THE BEST..

Name:: emma akridge       

Story::    MY fifteen year old son was diagnose in September with Steven Johnson Syndrome. This is how it first happend. I took him the ER he was diagnosed with strep throat and given a injection of penicillin. He was not getting any better, so I took him back to the ER , the doctor on call was his doctor, samet that diagnosed him with strep throat and gave him the injection of PCN. MY son was running a temp. of 103. and had blisters on his lips, and inside his mouth, also in the back of his throat. He was diagnose this time with Hand, and foot, disease. I was told to take him home and let it run it course. He was still not getting any better. So I took him to another ER in another county. The doctors there were baffled what was wrong with my child, but admitted him any way for dehydryation. The doctor that admitted called in a pediatrican. Luckly he had seen this before and knew what he had. He was put on about 19 bags of antibiotics and 20 bags of IV fluids. He had blisters on his arms, legs, lips, feet, hands and in his throat. He had to take breathing treatments 3 times a day, could not eat and was in the hospital for 8 days before he could eat and come home. The were just before putting in a stomach tube to feed him. But by the Grace of God he started eating, and started improving. His lips turned black, and bled 2 days before he came home. He was improving after he came home, but now he has gotten some blisters on his lips, and a few on his legs again. we have taking him to the doctor again,they tell us not to worry that it not reacurring. The doctors have not been a parent going through this with a child. It is really scary not knowing if he is going to get any worse.

Name:: Anne       

Story::    The culmination of 3 months work was our yearly sales Kickoff meeting, which I was coordinating. The day of the event, I noticed that I had white lesions on the insides of my lips. I had been on a course of Bactrim for a UTI the week prior. Having taken the drug in the past, I was aware that I sometimes ended up with vaginal yeast infection (and in fact, I had stopped taking Bactrim on day 3 of a 10 day course, because I thought I felt a yeast infection coming on). The thought crossed my mind that it might be possible to get yeast infection in my mouth as well, but I had the meeting to host and no time to think about a few little blisters. The day following the meeting, I suddenly developed a raised, red itchy rash on my chest. Still having the white spots on my lips as well, I decided I should call my Drs. office and inquire about the possibility of yeast infection. Again, I was lucky that the nurse recognized the possibility of SJS and had me come to the office immediately. The Dr. and nurse met me at the door (not a good sign). After looking at the rash and lesions, he immediately called a specialist and sent me there. Again, the allergist had a waiting room full of people, but ushered me right into the examination room, where he diagnosed me with SJS. I was given a massive dose of Prednisone, Benedryl and Zyrtec and instructed to call 911 if the rash continued to expand to other areas. Due to two "up to date", knowledgable physicians and some quick action, my rash has not progressed more than having a "sunburn" appearance over the rest of my body. I have had nearly a week of "flu-like" symptoms and until today have been unable to eat due to the lesions in my mouth and throat. Hopefully, I'm on the road to recovery and this dreaded disease will not reoccur. Thank you for offering a site to explain what was happening to me. I pray that physicians as well as lay people will take note and save others from the horrors about which I have read. Good luck to all!

Name:: TINA SCOFIELD       

Story::    HI, I JUST RECENTLY HAD A ALMOST FATAL ALLERGIC REACTION TO SOME MEDICATIONS I AM ON FOR MY LUPUS SYMTOMS. I HAD NOT HAD ANY REACTIONS SINCE I WAS A CHILD AND WAS NOT AWARE OF THE CHANGES THE LUPUS WAS DOING TO MY SYSTEM. WHEN I GOT TO THE EMERGENCY ROOM I WAS ALREADY IN RESPERITORY ARREST AND MY HEART HAD STOPPED. THE EMERGENCY ROOM DOCTOR EMMEDIATLY ASSUME I HAD OVERDOSED ON DRUGS. IT WAS A TERRIBLE EXPERIENCE FOR MY SELF AND MY FAMILY. I AM ON DISABILITY SO I CAN AFFORD A MEDIC ALERT BRACELET DUE TO A VERY SMALL MONTHLY INCOME AND MY MEDICATIONS ARE SO EXPENSIVE THEREFORE I AM FACING A POSSIBLE CHANCE OF THIS HAPPENING AGAIN AT ANY TIME. IN A MONTHS TIME I HAVE ENDED UP IN THE EMERGENCY ROOM TWICE AND MY DOCTOR TELLS ME IT CAN GET WORSE. PLEASE IF YOU CAN AVOID THIS SITUATION, FIND HELP FOR YOURSELF. FOR THOSE OF US THAT DON'T HAVE THE MONEY , JUST PLEASE BE CAREFUL. I AM PRAYING FOR EVERYONE IN MY SITUATION TO GET MORE KNOWLEDGE AND ASSISTANCE IN THE NEAR FUTURE. MAY GOD BLESS EACH AND EVERY ONE OF YOU, TINA

Name:: Mary Kite       

Story::    It is actually my daughters story October 1992 when she was just 2 yrs old. She had a slight reaction to cyclor before her bout with sjs. She had febral seizures caused by a fever. Usually following her seizure she would get sick, cold, ear infection. Her doctor admitted her to the hospital after she had a seizure in his office. Knowing the onset of a cold or something was to come he prescribed cyclor and I reminded the nurse she couldn't have that so he gave her Bactrim. That was the start of her battle. Shortly after her last dose of Bactrim, it was a thursday, she would ask to go to the bathroom and nothing would happen. The next day she was swollen under her chin. We took her to the doctor on Saturday and he told us it was a virus, go home and wait it out. By sunday she started running a high fever and swelling all over, small blisters at that time. I took her to the emergency room on monday and they didn't have an answer I asked could this be from the medicine? No, we called her doctor and he said that it is just a virus, go home, I was overreacting. Tuesday morning she was back at her doctors office and they had us rush her to Brenners Children Hospital. They did test and said it was more than likely from the bactrim. By the time she was admitted she was so swollen that you couldn't see her teeth and she couldn't open her eyes. Her skin peeled off when she moved. She had huge blisters. They told us she would be lucky to keep her eyes and teeth. She would cough up hunks of blood and meat. As it traveled down her body it stopped at her thighs and as fast as it had destroyed it was haulting. They said months of therapy, but thank god she didn't need it. Its more painful for us knowing she is allergic to medicines and hoping sjs doesn't happen again. I make doctors listen now, because she is MY CHILD not a copay.

Name:: Keeley Woods       

Story::    When I was diagnosed with mono at 14, I was prescribed amoxicillin, because that's what they did in those days. Within a week, I was covered in a rash that began blistering and extended into my mouth and made it hard for me to eat and breathe. I was taken to the emergency room, where they took me off the penecillin and injected me with benedryl and cortisone and said I was allergic to penecillin and not to take it anymore. It wasn't that much of a surprise, while I hadn't had any problems with penecilin before, my sister is allergic to it, and so it wasn't that big a surprise to us. When I was 20, I was diagnosed with a UTI, and was put on heavy doses of Cipro to treat it. I had never had a UTI before, and had let it go on too long. Soon after I began taking Cipro, after having explained my allergy to penecillin, I began to develop blisters and sores in my mouth. I quit eating and drinking, it just hurt too much and called the doctor to ask what was going wrong. She called me in and after examining me, said that I was lucky that I had such good timing. She had just come from a case with a young lady who would be permanently scarred and her sight damaged because of Stevens Johnsons Syndrome. But since she had seen it the first time, spotting it in me was easy. She took me off the Cipro and prescribed a smaller dose of a different antibiotic. She suggested that I avoid Cipro altogether, and let my doctors know in the future that I have SJS. Since then, I've been fine, and as long as I let my doctor know that I have SJS, hes good about prescribing smaller doses of antibiotics that have worked well with me before. It feels a lot like trial and error, and whenever I've had to take antibiotics, I get nervous thinking about the girl I could have been if not for my doctor's quick thinking.

Name:: irawan       

Story::    it is about sjs on my sister, she is 2 years old. i live in ciamis, west java, indonesia. on january 2003, my sister was sick and we got some medicine from a doctor. however, after she ate a medicine, her skin like burned. i difficult to make a story because my english. fortunately, she was better after 3 weeks in hospital.

Name:: Michael Ezell        Email_address :: michaelbcc@msn.com

Story::    I was suffering from a bad sinus infection and was prescribed vibramycin to combat it. After a few days...I began running a slight fever and my eyes began 'matting' shut at nite. At the same time...I began to develop pain in my mouth and throat. My wife noticed ulcer looking sores. I was having problems swallowing. I 'chalked' it up to a cold or the sinus problem. But my eyes were really of concern and I contacted my general physician. He was concerned, but didn't know exactly how to treat the problem. I found that there was an 'Ophthalmologist' in Lake Havasu City, AZ and I called them. Not having insurance at the time and having just started as a pastor of a small church, I was 'financially challenged'. The appointment secretary scheduled an immediate visit even after hearing I had no money (I promised to pay no matter what). Upon arriving at the office, they took me to the examination room. The doctor looked at my eyes..then my mouth...then my throat and called several of his assistants in. He took photographs and did several procedures on my eyes that seemed like he was "stripping' skin off. He called my wife in...and indicated that it appeard that I had a severe reaction to medication and that it was called "Steven's Johnson Syndrome". He started me on meds...telling us that we should 'pray' that this could be brought under control. He indicated that it was something that little was known about...and that we would know soon if continuing damage would be arrested. After several visits over a period of about a month....although my vision was impared for a period of time....I am greatful to the wisdom of this doctor for having been aware enough to 'do what he could'. I was VERY ILL when I went to see him. The sad element to this story is that I never thought to go back to thank him for his treatment ...I recently served as a volunteer chaplain at a medical center and visited a person's room. She was not expected to live. She had SJS. I never knew how fortunate I was ..... and... the doctor only charged me 25.00 total for all my visits..including the emergency interventions on the first visit... Michael Ezell

Name:: Eileen Bowen-Jones       

Story::    My son Oliver is 18 years old and at the end of October 2002 he suffered quite a bad cold. Being 18 it didnt bother him too much and life was pretty much as usual with Oliver taking the usual over the counter cold remedies. One Friday evening he seemed a little worse and had arranged to go 'paint balling' with some friends on the Saturday. I remember we had a discussion and I tried to advise him to stay at home but he insisted that he would be OK and that I shouldnt worry so much. Saturday came and he went for his day out. When he returned he was obviously a lot worse. By the Sunday Oliver was complaining of mouth ulcers and was really unwell. On the Monday I decided that he should pay a visit to the Doctor and an appointment was duly made. By this time he had a rash on his lower forearms and the backs of his thighs and also conjunctivitis. The Doctor examined him and he was prescribed mouth wash for the ulcers, eye drops for the conjuntivitis and he was given tablets for shingles. Oliver started the medicines straight away but he was not getting much relief. He couldnt eat and by the Tuesday evening he was vomiting and so could not absorb his medicines and was becoming dehydrated. I was quite concerned but on the Wednesday I went to work and whilst I was driving to work Oliver rang me in great distress asking me to return. I was really concerned as he is not normally ill and can usually cope with normal day to day illnesses. He was generally fit and healthy and had recently applied to join the Royal Marines. I tried to ring the Doctors surgery but was unable to get through so I decided on my way home to go straight to the surgery and insist a Doctor visited Oliver at home. A visit was arranged and a Doctor was due to make a home visit by lunchtime. When I got home Oliver was in a real state. He looked terrible, his rash had worsened, the whites of his eyes were blood red and severe blisters had formed around his mouth. The Doctor duly arrived just after mid day, he examined Oliver and said that although it was extremly rare he thought he was suffering from something called Stevens Jonnsons Syndrome. I had never heard of this before and was very concerned. The Doctor rang the local hospital and arranged for Oliver to be seen at the Medical Assessment Unit that day. I took Oliver to the hospital and by the time we got there he was very ill. He could barely walk, his eyes were worse, he had thick saliva drooling from his mouth and he was vomiting. A consultant dermatologist was called to see Oliver and it was agreed that he did seem to have SJS. It was recommended that he was given steroids but there was no guarantee that they would help him and that the condition may just have to run its course. He was put onto a drip for fluids and was given steroids and morphine for the pain in his mouth and throat. Oliver was admitted to the hospital and placed in a ward. He was unable to lie down to sleep as the mucus forming in his mouth was making his life extremly difficult. He spent the first four days sitting upright in a chair. Oliver was unable to take the pills he was being given because of the pain it caused so he had to be put onto a drip for the steroids and the morphine. He did not want to be left alone as he was extremly frightened and in a lot of pain so I stayed with him for two nights. What I found disconcerting was that the hospital doctors were walking around with the same internet print out of Olivers condition that we had been given by friends after we had told them what he was suffering from. By this time it was Halloween and we joked that he would have made a great ghoul - he looked terrible, he continued to drool thick mucus which had blood in it, the whites of his eyes were red with dark rings round them and his lips were swollen to twice the size with the ulcers and blisters, his rash had worsened and was very red and itchy. He said he could cope with the rash and the conjunctivitis but the pain in his mouth and down his throat was too much. After the second night he did seem to be feeling a little better and then he gradually improved. Oliver was in hospital and on a drip for ten days. By the last two days of his visit he had almost fully recovered with just the blisters in his mouth to contend with. He had to eat baby food - which went down well as you can imagine. The doctors were unable to find a reason for Olivers illness and just said that if he started to contract cold sores from then on then that was likely to have been the cause. It is now February 2003 and there have been no signs of cold sores. Oliver has not had any long term effects and has made a complete recovery and I can only thank his local Doctor for diagnosing him so quickly. I have never before heard of anyone suffering from this condition and I hope Oliver does not contract it again. It is very frightening for all involved and I know can cause long term effects. I can only be grateful!