Name:: Jenni Johnson       

Story::    My name is Jenni Johnson and 9 months ago I lost my best friend and Mom to TENS. My Mom found out on May 1, 2002 that she had a brain tumor and after finding out that it was more than likely non-cancerous we all breathed a sigh of relief. After my Mom came through her surgery with flying colors and we found out that the tumor was definetly non-cancerous we were so greatful. She was even home from the hospital from major brain surgery in 4 days! Her recovery was going to be slow, but she was slowly getting back to herself. When I realized that she wanted to go to Target and Walmart, I knew that she was starting to feel a little better. My Dad and her finally went to their vacation house because things were looking so positive. I feel bad looking back at it because she called me at work and told me she wasn't feeling that good but she wasn't concerned about it so I wasn't either. Then I got a call saying that my Dad took her back home and took her to the doctors and then to the hospital because they thought she was having an allergic reaction to one of her medications. Again, I didn't think much about it and thought that the doctors would fix everything. When my Dad called and said that the "rash" was looking more like burns and that the doctors wanted to send her to a Burn Unit in Baltimore, I was definetly concerned. They helicopter(ed) her to the Burn Unit and I will never forget as long as I live the first time I saw my Mom. She was still awake and being herself all she wanted to do is to make sure that I was okay and that I didn't let my work take advantage of me. We had a short converation and I told her to rest, that I would come back later and that I loved her. The last thinng my Mom said to me was that she loved me. After that they had to put a ventilator in and she never was able to communicate and was never conscious again. Her burns spread to over 40% of her body and she developed an infection that took her life. She was only 51 years old.
I have been in a steady state of shock and I have been trying to live my everyday life as normal as can be. I guess I cannot believe that my Mom is gone. We always talked everyday and we would always joke that we sometimes shared a brain because we could always finish each others sentences and had the same feelings about everything. My life is numb. If it wouldn't be for my 2 year old daughter, I don't know what I would do. She is the light of my life and keeps me going. For the past 9 months I have been going through the motions and doing what needs to be done, but I know that I am not the same since my Mom passed away. I miss her so terribly and I am so angry that a medication that was suppose to help her ended up taking her from me and my family. My Dad did consult with an attorney but we were informed that basically the FDA has too many lawyers and too much money and it would be a long and tiresome fight. There is no one to take the blame for taking my Mom away. Not the doctors that issued the medication, not the hospitals, not the developers of the medication, not any insurance company, NO ONE.
I am truly numb and cannot grieve for my Mom yet. She was so important in my life that I feel that I have lost myself in losing her. Writing this note, has helped me express my feelings and I know that you can all understand what and how I feel. Thank you for giving me a chance to maybe start to heal. please add me to your list. Thank you. Jenni Johnson, 5314 Sovereign Place, Frederick, Maryland 21703.

Name:: Melissa Hudson       

Story::    From reading the testimonials on this site, I am both horrified by what I have learned and releaved that I have only a mild case of SJS. My prayers go out to all of these people who have gone through this horrible experience.
Friday, May 16,2003- I awoke with abdominal cramping and burning during urination. Since my PCP was on vacation, I was seen by his colleague, diagnosed with a UTI and given an Rx for Bactrim (Sulfa).
Saturday, May 17-- 2003 Withing the next 12-18hours after starting the Bactrim, I began having itching in my genital area, which I thought was a yeast infection. This is not uncommon for me to develop after taking antibiotics. The doctor told me to treat myself with an over-the-counter cream. I used the 1-day dose insert, along with topical cream. This did not help as on Saturday and Sunday nights I woke up with severe itching and rawness. At one point, I had my husband hold my hands so I would not scratch in my sleep.
Monday,
May 19-- I could no longer urinate due to pain. I had skin peeling off of my genital area. I tried to get back into the doctor but they would not be able to see me until early evening. By four p.m.,I decided to go to the Emergency Room and requested a catheter be inserted. I had a fever, but they sent me home anyway, telling me to continue with the Bactrim. He also gave me an Rx for diflucan, an oral treatment for yeast infections.
Tuesday-- I am basically okay, but fatigued. My fever comes and goes, but never gets above 101. That evening, I began having eye irritation, forming puss. I contributed that to an infection from probably not washing my hands well enough and then rubbing my eyes. One of my children had had this problem and I had left-over eye drops I began using.
Wednesday-- My fever is about 100.7 and I am tired. I take my final dose of Bactrim. I go to bed around 6 p.m. and sleep for approximately 4 hours. I awake to find a huge blood blister on the inside of my upper lip. I decide to return to the ER. I am given a chest exray, EKG, all kinds of blood tests. The doctor says my heart is tachycardic and I may possibly have pneumonia. My husband is a paramedic and I can tell this is not good at all. The ER doc says he'll have the rediologist look at the exray in the morning and get backwith me. He also says I have pericarditis, which is an infection of the mucous sac surrounding the heart. My husband tells me I may have to have a large needle inserted in my chest to remove fluid around my heart. Again, I am sent home with 2 doses of Vicadin for pain. By the time I reach home, I have 3 new blisters.
Thursday-- I awake with more painful blisters, some filled with blood and some with a clear fluid. Under my tongue, I can feal a blister forming that I run to the mirror and can actually see it growing larger. When it is to the point that I can no longer move my tongue at all, I popped it. I then rinsed my mouth with an antiseptic mouthwash. I have an appointment at the PCP's office to have the catheter removed. My eyes are now almose swollen shut. The fever comes and goes. I asked her to check my genital area as no other doctor has. She ran a full battery of tests and reviewed the lab results from my ER visit the night before. The blisters are now covering my lips and mouth, down my throuat, in my ears,nose, and vagina. She tested me for every known STD. After enduring an extremely painful vaginal exam, she told me she wanted to treat me for Herpes. As you can imagine, this has caused great stress on my marriage. I trust my husband with all of my being--BUT, that's just it BUT. This is my second marriage and we have been together for 8 years. I am only the second woman he has ever been with. I know this is true and that he would not cheat on me. I also know I have been 100% faithful to him. The only way this is possible is if a person can have it for almost 10 years without ANY symptoms. I leave the doctor's office with an Rx for Valtrex, Levaquin (an antibiotic), and Mary's Magic Mouthwash, which is a compound made by the pharmacist containing benedryl, an antiseptic, an antibiotic, and pain reliever. I still have the catheter. At the pharmacy, people are staring at me and I feel like a freak. Within four hours, I began to develop hives. I call the doctor and am told to take benedryl. I want to be admitted to the hospital but am told I don't need to be. She tells me if I go to the ER, they will only give me shot of benedryl and send me home. I take the benedryl and sleep for a little while. The hives are worsening, and are now about the size of a quarter, covering my face, neck, upper back, and some down my arms. I am using an anti-itch lotion containing camphor and menthol. This seems to help somewhat. I have difficulty sleeping and get up several times to pace back and forth, trying to fight the itch. I am using alternating cold and warm compresses on my eyes, and ice on my lips. This burns, but seems to help the swelling.
Friday, May 23-- I wake up wondering, "What's going to happen to me today?" As soon as the doctor's office opens, my husband calls and DEMANDS an appt. with my regular doctor who retuned that day from vacation. Let me tell you, I LOVE my doctor. After this, I don't believe I will ever see anyone else. He consults with a well-known dermatologist and diagnoses me with SJS. I am so greatful for some answers. He gives me a Rx for prednisone, explaining that large initial doses, tapering off, may help. He wants to see me back on Tuesday. Within just a few hours of beginning the prednisone, my family tells me they can tell some difference in the redness and swelling. I am still using ice chips on my mouth and eyes. My apetite is beginning to return, but cannot eat or chew. I finally eat some cottage cheese and a peanut butter sandwich which I tear into dime-size pieces. I have not eaten or drank anything but water or gatorade since Monday.
Saturday, May 24-- I slept better last night, still waking with itching but not as bad. My mouth and lips are still the most painful part. I am using Carmex to try to keep them moist and stop the cracking. My eyes are dry and sensitive to light. I have had some difficulty typing this as it is sometimes hard to see. The prednisone makes me sleepy and I have slept most of the morning. I finally feel some energy so I decided to search on-line and found this site. I know I'm one of the lucky ones, even with all of the pain and all. I have spent a fortune on doctor's office visits and prescription copays this week, but just knowing what is wrong with me makes me feel somewhat better. I am greatful for my wonderful husband, family, and co-workers who have been here for me this past week. My heart and prayers go out to everyone else suffering from this condition. God Bless. Melissa

Name:: Bill Gray       

Story::    My daughter is a 4 yr old who developed TEN. She went through an extreme amount of pain and suffering. She acquired this from Bactrim. She was diagnosed as having an upper respiratory infection at first. She was taken into the dr's office because of her cough she had at the time. She was seen by a nurse practitioner. He diagnosed it as upper resp. infection and prescribed Bactrim. We picked up the prescription and gave it to her. We were kind of caught off guard. I have never seen a prescription bottle that large in my life. We were told to give it to her for 14 days 2 times a day. She started to become very calm and had no energy after about the 9th day. Obviously not acting as herself. We took her to the hospital emergency room on Friday night. She was seen by the Emergency room doc. He saw her symptoms and called the on-call physician for her. He did not want to waste his time coming up so he told him to tell us to come in Monday. We then went home and continued the Bactrim. She got worse the next day with light red blotches. We took her back that night and we were told again to go home. The doc never showed up on the second phone call either. Then on that same night we noticed when she was getting a bath she had what looked to be a yeast infection. When she went to the bathroom she screamed in unreal pain. When we checked it further we could see where it looked as though a blistered popped inside of her. We rushed her to the hospital and they finally got her doc up there and all the sudden he freaked. Before I knew it they were deciding which burn center would be best. At this point we still had no idea what was wrong. We were told it was going to get really bad and that they would treat her as a burn victim. When we arrived at the best hospital that was close there were about 15 specialist waiting on her. By this time her eyes were swelling shut her skin went from red to purple and she was in and out of conscienceness. After almost losing her there she spent 8 days in intensive care. Then was life flighted to childrens national medical center where she would spend another 7 days. For that amount of time in the hospital she could not open her eyes for 11 days and could not speak for 7. She was highly medicated and fed by a tube. Fortunatley she recieved a new and less painful method of treatment. She would need skin graphs over a significant amount of her body. To truly explain all details is too tough for me as her dad to type. We found out that Bactrim did this and were never told that there would be any side effects let alone this. She now has tubes in her eyes and cannot go outside for extended amounts of time in direct sunlight her eyes will not let her.She has developed a hideous cough that she cant shake. She sounds like she smokes. It its very painful to see here like this, however I am her daddy and will always be there no matter what. My Daughter's name is Addison Gray and she is the toughest kid I know. Too bad it took bad judgement on the medical staffs part for us to find out. Thank you for your time, Bill and Torrey Gray

Name:: Rashawn       

Story::    In August 1995, I had a day that I will never forget. The day started up when I woke up from a nightmare of being shot. I had plenty of dreams before of something bad happen to me so I didn't this was anything different. I decided to go over mother house to wished her a happy birthday but she was'nt home so I went to visit my girlfriend. I decided to leave her house at about 8p.m. but right before I left my girlfriend told me to take off those baggy short because I didn't have a belt and to wear the short that fit me better, I didn't know at the time but that could one of reason that I'am alive today because I would have to run for my life and it would had been hard if my pants was down to my ankle. I waited for the bus for about an hour and decided that I wasn't to far from my mother so I would walked over there to wished a happy birthday. I walked about a mile and finally reached my mother block as I turn the corner I noticed four guys in a car, as I kept on walking I heard a voice that said give me your stuff and I saw a gun but My first response was to run.I started to run and the guy fire the gun and the bullent hit me in the back of the head.I fell down hard and got up and continue to run to an neighbor house for help. Everyone said that I was very lucky as the bullent is still in my head and since it did't do any damage to my brain there was no need to take it out. I was told that because I did have an head injury that I need to diltain to help prevent seiurze and that when the real problem started to occur. I was taken it each day on time and once I noticed an rash on my arm so and my temperatue of 104 and just in a matter of I went from and healty 20 years old who survive being shot in head to an young men fighting for life because of medication that was supposed to protect me. My skin was just fallen got my body and I couldn't eat anything.The docter told my family that there was a good chance that would't make it. I spent amonth of hell being in that hospital but I made it out.I have picture of my illness but i Don't like looking at them. This was eight years old but I still have the physical and mental scars of having Steven Johnson Syndrome.

Name:: Tiffanie Downare      

Story::    About 3 weeks prior to my fourteenth birthday I contracted SJS. I had been taking a dermatologist-prescribed medication for acne that contained Sulfa and decided to stop using it since I wasn't seeing results. A few days before Christmas I was sitting in the hottub with some friends and noticed a few blisterish things on my stomach and back but I didn't really take that much notice. The next day I felt extremely ill and my mom didn't take much notice until I passed out in the hallway. As Christmas neared we went to my grandma's house up north despite my illness and the fact that more and more blisters were appearing and symptoms were getting worse. The blisters covered my entire upper body including my face, back, stomach, and arms. They filled my mouth even and I had strange lesions on my eyes. I literally could hardly move, everything was blurry so I couldn't see much, my fever was horrendous, and I constantly felt like I was going to puke. The pain was almost indescribable. I just layed and sobbed for about 2 days and wasn't able to open presents even. The day after Christmas my family took me to the emergency room where they made me sit and wait for about an hour until bringing me in. As the doctor diagnosed me with things like chicken pox, measles, and flea bites my mom looked frantically through a book of medical problems and came to Steven Johnsons Syndrome. It fit the description perfectly but when she asked the doctor if it could be that he said no, it's too rare. I was put on steroids and sent home where I didn't move for about three weeks. Near the end I suffered extreme depression and the blisters remained for a long time. It took a lot for me to leave my house for the first time since the sun hurt my eyes and I had scars all over my face. I'm 16 now and I still have the scars. When we went back into a different doctor they finally diagnosed my problem in it's latest stages and were amazed that I lived through it since i was taken care of at home. When we called the dermatologist that prescribed the Sulfa based drug he said that we assumed the risks. We were never warned of anything like this, but I just want to make sure that everyone else is warned. And I want doctors to be more aware of this so that it can actually be diagnosed and cared for.

Name:: SARA MANOOGIAN       

Story::    MY NAME IS SARA MANOOGIAN, I AM PRESENTLY GOING THROUGH A ALLERGIC REACTION TO BEXTRA, I THINK I HAVE SJS, I HAVE MANY OF THE SYMPTONS LISTED, SEVERE SKIN RASH ,BLISTERS, BREATHING PROBLEMS AT TIMES. THIE FIRST DOCTOR I WENT TO PUT ME ON 60MG OF PROTOSONE FOR ABOUT 2 WEEKS. IT STARTED TO CLEAR THE BLISTERS AND RASH BUT AS THE DOSAGE WAS REDUCED. THE BLISTERS ,RASH, AND BACK PAIN BACK . THIS DOCTOR FINALLY GAVE UP AND SENT ME TO ANOTHER SPECIALIST. HE PUT ME ON GENGRAF A ANTI REJECTION DRUG THEY GIVE TO TRANSPLANT PATIENTS. THIS HAS CLEARED THE BLISTERS AND RASH BUT NOW I HAVE EXTREMELY PAINFUL BACK PAIN AND ARTRITUS TYPE PAIN IN MY HANDS.I HAVE BEEN TO MORE DOCTORS, HAVE HAD TWO MRI.CAT SCANNS BUT NO ONE SEEM TO HAVE A CLUE WHAT IS CAUSING THIS.I WONDER IF ANY OF YOUR MENBERS COULD GIVE ME SOME GUIDANCE. THE DOCTORS HAVE GIVEN ME DRUGS FOR THE PAIN ,BUT IT IS STILL UBEARABLE.I HAVE BECOME VERY FRUSTRATED. ALSO I AM WORRIED WHEN I GET OF THE GENGRAF IF THE BLISTERS AND SORE WILL COME BACK. THANKS FOR YOUR TIME AND CONCERN. GOD BLESS, SARA MANOOGIAN

Name:: Gary Pettijohn       

Story::    My daughter Kristen Pettijohn recently passed away (5/23/03)at the Indiana University Medical Hospital from complications resulting from an adverse reaction to the antibiotic Avelox. She took the drug initially the evening of 5/16 and the initial symptoms were a high fever and soreness on 5/18. We took her to Margeret Mary Hospital in Batesville IN where they discovered that her liver enzymes had dramatically increased and they felt it was a type of hepatitis. We advised the hospital of what medications she had taken and when but there efforts didn't seem to take into consideration an adverse drug reaction but rathera liver ailment. One day later, totally baffled, the hospital and our family doctor had her transfered to the IU Medical Hospital in Indianapolis, IN where she started to develop skin rash and lesions. in less than a few hours my daughter was in Intensive Care and put on life support. Testing revealed the liver failure and skin lesions were from a reaction to the antibiotic Avelox. The doctors at IU indicated that they had not seen a reaction inwhich both SJS - TEN and liver failure occurred simultaneously. She was given drugs to offset the Avelox reaction and was put on dialysis since her liver was non-functional. Two days later, 5/23 it was decided a liver transplant must happen in order to give her any chnace at survival. She went through the liver transplant but died a few hours later from heart failure.

Name:: Janette Martinez       

Story::    Hi my name is Janette my son Bradon Martinez has SJS he got SJS December 31,2003. He is nine years old. It all start with a simple sore throat and pink eye. I took him to the doctors and they perscribe an antibotic call augmint. I gave him the first dose and he was fine when I gave him the secont dose he started to brake out in hives. I rush him the hospital they told me he was have allergic reation to the medicen they told me to stop the medicne so I did and they also told to comeback in tweleve hours but by the time I drove back home he was already cover with blisters his eyes where glue shout he could not even talk. I rush him right back to the hosptial. When got to the hoptial nobody hand any idea what was wrong with him they final call the childrens hospital and send him over their. By the time he got to the hopital he was already having troble breathing. They still had no idea what was wrong with him. They finaly took him down to ICU because he could not breath any more and had to put a trake to help him breath. The next day a doctor final realize that it was SJS. Two weeks later his lungs collpse his liver was not fuction wright he end up with jundice .He stay in the hospital for 1 1/2 month and three weeks in a rehab center. He has damage in his eyes he has some resptiory prombles and once in a while gets jundice. I just thank GOD every they that he is ALIVE.

Name:: Brad       

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

Name:: Diane Muszytowski       

Story::    I have had a low grade fever for 4 1/2 years. It started out as fatigue, which continued on to become the ever present fever. My work as a dog groomer was affected. I was tired all the time. The doctors all said it was my bad sinuses and allergies that were causing the fever.I didn't want to have sinus surgery and fought it for 2 years. I gave up all my pets and was only able to keep my fish. i was getting allergy shots every week. When the fever started peaking at 100-101,I had to stop the shots. In November,2000 I gave in and had corrective surgery on my sinuses to enable them to drain and hopefully clear up. I had stopped taking antibiotics a year before this as thewy didn't work.I also refused to take cortisone treatments, because of my weight and depression the fatigue caused. I had to have another sinus surgery April 4, 2001, because the first one, was not completely sucessful. The second sugery took and my breathing got alot better, however my reaction to all of this clearer sinuses wasn't good. Within the end of April I was put on disability, because my doctors were afraid I would stop breathing at work. I have been gromming dog for 21 years and am an excellent groomer, it's all I know. The very next day my best frind died in a bicycle accident and within 2 weeks the doctors confirmrd that my fever was not from my sinuses and thus started an effort in futility to find the reason why I had a constant fever. My normal temp was always 97.4. A year ago my lowgrade(99.2-3) went to 99.9 or higher depending on the outside temp. Iwas put on several antidepressants which now made me suicidal. So I was very afraid to go on more. My psychiatrist, Dr Trevor Fooks of Fremont CA wanted me to try one more drug. He wanted me to try Lamictal. It is an antiseizure medication which is also a mood stabilizer. He told me to watch out for a rash. I asked if there were any possible liver problems? He said no. I was desperate to try and get my depresson under control. I started out taking the Lamictal and within 10 days I was feeling like my old self, but I had had three pustules in my mouth and trhee on my arm. Dr Fooks said that was a rash. I trusted him and doubled the dose like he said to. Within 3 days I had itchy eyes then the next day they burned and were running all day. This all started Friday December the 13,2002. Sunday morning I woke up and had large blisters in my mouth. Dr. Fooks still insisted that it must be a reaction to something I ate. It was worse as the day went on. I took my last dose of Lamictal Sunday evening. When I woke up Monday morning I knew something was very wrong. I went to my normal GP Dr. Vanessa Wilson. I didn't even call I showed up around 9am and they put me in a room my temp was 101 and my lips were 3 times, their normal size. My blood pressure was higher than normal. Dr. Wilson wanted me admitted to the hospital immediately, but an ENT Dr.Gordon Epstein(the doctor who did both of my sinus surgeries) said no. He wanted me to be seen at his office that afternoon. Dr Ellerson say me and didn't know why they sent me there. He said I needed to see a dermatologist. I had to drive 30 minutes to see Dr Minh Dang(I might have spelled wrong). I told her it was the syndrome attributed to Lamictal,But that I couldn't remember the name. She wanted to put me on steroids. I said no. By 3:30pm Monday I had little red pinpricks on my shoulders, the rash finally. Dr. Wilson told me when it got bad to go to the emergency room. Tuesday morning I woke up and knew, I had to go to the ER. When I got there they asked what was wrong all I had to do was open up my mouth and show them my shoulders, which now had large paintbrush looking strokes on them . I told them that it was the syndrom attributed to Lamictal, but that I could remember the name. They put me in a private room, because they thought I might be contagious. My blood pressure was out of this world and my temp was 102.9. I stayed at Washington hospital from 12/17-12/24/2002. I almost died. I'm lucky to be here. I lost all the skin on my palms and bottoms of my feet and within 2 weeks of leaving the hospital I lost all my toenails. I couldn't eat at all when I was in the hospital. I was limited to soup and very soft food for 2-3 weeks after. I still have scars on my tongue. I will be ever grateful to Dr. Jeffery Carmel for telling me that steroids were contra-indicated, for this syndrome. When I was in the hospital, I took some mouth rinses that Dr. Wilson prescribed 2 times they made everything worse. The cortisone cream made my skin worse. When I finally started to refuse any thing steroid related thing stopped getting worse. By this time, the 3rd day in the hospital. I had my first treatment of immunoglobulin(sorry for spelling). By day 5 I was getting better. My fever was uncontrollable until I asked the nurses what the room temp was. It was set at 75. I told them to lower it. My temp went down to 99, when they set the room temp to 60. My temp was still spiking at 103-104, 2-3 times a day. The insurance that I had made me go home and wouldn't,put me in a convalscent home. Luckily my church, the Church of Jesus Christ of Latter-day Saints found a wonderful woman to make sure I was all right. She stayed with me for 6 days. I cooked all my meals except for one or two. I was so happy to be out of the hospital. For the most part I'm all right I did lose all my fingernails and they have now grown back. I lost 3/4 of my hair and some ti growing back. I got all my sensation back in my mouth and lips. My eyes didn't seem to suffer any, but I haven't seen an eye doctor yet. My vision seemed to be the way it was before the Lamictal, around 12/29/02. The only bad thing that happened, was on Janury 12,2003 I had a spiking fever, about 102, chills and the same headache I had in the hospital. I developed severe joint pain and had to go to the ER and was finally given morphine and told it was the Flu(THE FLU MY SHINEY HINEY). 1 month later they said it was the Steven's Johnson Syndrome(DAH).It was severe for about one month, but I still can't sit or stand for any lenght of time, without the pain going up my legs, to my spine. No doctor seems to be able to tell me about when or where this will be gone or if I will always have to be alert for another attack.

Name:: Christina       

Story::    Hi My grandfather, 77 yrs of age, was diagnosed with Steven Johnson Syndrome about 6 weeks ago. He was taking a kidney medication that he was either allergic to or was lacking the kidney function to endure. It started off with hay fever-like allergies...itchy, puffy eyes and a slight skin discoloration. Two days later he was extremely itchy all over and was brought to the hospital....We were amazed to find out that hardly any of the dr.'s at this particular hospital had ever heard of this syndrome. My mother and I did our research on this web site and some others so that we could help my grandmother understand what this thing was. A day after being hospitalized My grandfather looked like a severe burn victim, he had blisters forming all over and his skin was literally bleeding as they would break...he could hardly open his eyes or his mouth and complained of a horrible feeling his throat which we later found out were also blisters. My mother spoke to coworkers at another nearby hospital after we realized the one he was currently in were treating this as any old allergic reaction (with benedryL) They had him moved to a Burn Unit. Over the past few weeks my grandfather's skin has improved 90% with the exception of his arms and legs...but his face has not even a scar. During TENS his organs were effected most of all. His kidney's continued to fail him and he suffered a few minor heart attacks. He's now being treated in another unit for his heart and his lasting pnemonia. They are constantly suctioning his stomach to get out all of the mucus and blood that this syndrome caused inside of him. he's suffered hair loss. He is now on dialosys for his kidneys three times a week. My grandfather was always a very healthy, outgoing man and no one i'd introduce him to beleived he was a day over 60....What has happened to him is not only extremely unfair but extremely scary. And scary to know we all need to be careful in order not to take something without knowing it is going to make us sick. Just like my grandfather, he only wanted that medicine to make him better. Instead he is left suffering far beyond any of us could imagine. Lately he's had his eyes opened and we think he can see us but then, we aren't sure of his eye sight just yet. He can't speak yet, and he's been on and off a respirator for a while now. We sure hope he's going to be okay. The dr.'s seem positive and are talking about rehabilition for him when he's ready. We continue to pray and be optimistic. I appreciate having the opportunity to read about others that have had this syndrome or loved someone who did.

Name:: LaTonya Allen       

Story::    In February 2003, my fiancee was diagnosed with SJS. Unfortunately, the diagnosis came too late and he passed away, a little more than a month before the expected birth of our child. Unfortunately, because the Doctors that he dealth with had little knowledge of how to treat SJS proper, and his death resulted from respiratory failure, kidney, liver and pancreas failure. not to mention the terrible ordeal that he had already gone through with the severe rash, jaundice of the eyes, not being able to eat or drink and the constant pain and burning produced from the painful lesions on his upper body. If my family knew then what we do now, I can garuntee you that would would have sought out to have more than one medical opinion, and we would have monitored the choice of drugs that had been prescribed to him--which induced SJS. Unfortunately, there is nothing that I can do to bring him back, not for my sake nor the sake of our now 10 week old child. i can however, begin the healing process, by learning more about SJS and helping make others in similar situations aware of the dangers that lurk when taking both prescription and non-prescription drugs. Ask questions. If you still beleive that you are not getting the answers that you need, ask someone else. You may feel as if you don't want to be a bother, but believe me, it could save your life or the life of a loved one. In the end, if you saved a life, wouldn't it be worth it?

Name:: nicole chapman       

Story::    I was six years old and in the first grade at Fairview Elementary school when I came down with SJS. It started with a headache one day then the next day I had a fever (103 degrees), the third day I developed red spots that kind of looked like the measles. I went to the Doctor and they said that I had the measles, even though you get a measles shot they say that there is a 10% chance of getting them anyway. They gave me medicine and sent me home. That night I was so miserable that I couldn’t sleep so my mom and I laid on the floor we maybe got three hours sleep, when the alarm clock went off the next morning, I couldn’t open my eyes, my parents worked for 15 minutes with a warm washcloth and got one eye to open. Mom called the Doctor and he told them to get me to the hospital as soon as possible. When I arrived at the hospital I was swarmed with 5 doctors and within about 30 minutes they diagnosed me with SJS. I stayed in the Intensive Care Unit here in Klamath for a day and one night and then they had to life flight me to Portland, Oregon to Emanuel Hospital, while they was preparing me for the flight they took my gown off and the top layer of skin on my back came off with the gown, my hands were so blistered they was as big as a base ball glove, no one could touch me without my skin coming off on them, when the nurse tried to put medication in my eyes she had to touch my eyelids and the skin came off on her fingers. I was flown from Klamath Airport to Portland airport on one plane that had 5 people aboard to take care of me, then when I arrived at the Portland Airport I was transferred to a helicopter and then flown to the hospital. I was put into the ICU unit for awhile then transferred to the burn unit. When I first arrived at the hospital I stopped breathing twice. The first surgery that I had was the removal of my top layer of skin, then they covered me with pig skin, until my skin grew back then the pig skin peeled off. I was also wrapped in guase and looked like a mummy. If you didn’t know who I was you’d never recognize me. In fact no one was allowed to come into my room without scrubbing and putting a mask, gown and gloves on. The only ones allowed in to see me was my parents. While I was in the hospital I lost some of my hair, all my fingernails, and now I can’t grow fingernails properly, they split in the middle. When the pig skin come off I was in BAD pain because it was allowing the air to hit my nerve ends and that caused major discomfort. I was on morphine for the pain and that wasn’t helping, so one of my nurses, Tanya told Mom that she had an idea and they took me in my room and put Crisco shortening on me, I slept all night that night. It covered the nerve endings. In fact the next morning they took me off of my pain medication because of the Crisco!! It was a week before my Mom could comb my hair and then when she did the brush came out with a lot of my hair.
According to my Mom’s diary I was a real PAIN in the rear end when I was in the hospital, the food was nasty, the chair was to small I couldn’t sit in my Dad’s lap, I didn’t want the hospital teacher to talk to me, I told her that she wasn’t going to be my teacher because I had my own teacher Mrs. Larson. I kept telling everyone when I got home I was going to knock knots on my big brother. C.J’s head. For the first few days after surgery I was only able to have liquids and could only eat from the feeding tube. I later could eat regular food but had to be careful because my tongue had scar tissue on it and it messed up the taste buds.
The effects that I have now include: loss of hair when brushed, fingernails won’t grow properly, scar tissue on the tongue, which means when Mom cooks certain foods she has to cook a separate dish for me, many nights I have something different because I can’t have the main dish. I also have tendonites in the knees, I am having shoulder problems, I have glass tubes in my tear ducts. I have to go through a surgery once a year for the rest of my life. I have to go through the surgeries for my glass tubes, they take them out and clean them, and they go in and deep clean my ears, because of so much scar tissue in the ear canal. My muscles aren’t developed completely in my legs because I was in a bed in a bent leg position for so long. It seems like every time we turn around we figure out that something else is caused from SJS. This is a horrible syndrome and it makes life really miserable. When I sneeze, or cough I have to make sure I close my eyes because it can cause my tubes to come out and then we have to make an emergency trip to Portland. I can’t open my eyes under water because the possibility of them coming out. Is life a pain? Well at times it can be, but everyday I am just thankful that I have a chance at life. Remember take each day and be thankful that you are able to be here.

Name:: Lori PHELAN       

Story::    Hello, My name is Lori Phelan,I took ill on april 23brought to the ER,were the Dr. toid me I had scabeis. he had no interested in me that day. Send me home with a drug that almost kill me. Thats when the next day I was brought to my GP, I was diaogse with SjS on April 24, 2003 I am 43 year old women. Talking with family members, I belive I have sjs as a child. I spent 5 hours in My gp office. the day the hospitalize me. the Dr could not figure out what was going on so she send me to the hospital. Were I was diaogse by Dr. scanlon. I am thank for Dr. Lynn Huffman and Dr. C Scalon. they save my life. I have lost eye sight in my left eye. But doing very well with the rest of my body. My biddest goal now is to have all dr's learn what this is. So people with rashes will not be sent home to die.

Name:: Beverley Beal       

Story::    My son Luke who is 19 showed flu like symptoms for 3 weeks prior to being diagnosed as having SJS 2 months ago, thankfully by chance he was seen by a very astute doctor who happened to be on call on a Sunday evening. Two other doctors had seen him, the first said there was nothing wrong with him, the second said he had a severe infection and prescribed penicillin which obviously made the whole thing so much worse. By the time he was admitted to hospital he had lsot 21 pounds in weight, was unable to swallow, had trouble with his vision and could not pass water. Like so many others I was releived to have a name for what was wrong with him not realising the seriousness of the condition. Fortunately, he is making great progress now and although he needs to visit hospital weekly for the next 4 months, there does not appear to be any lasting damage. I hope I never have the misfortune of witnessing SJS again but would urge anyone to persist with medical staff and not let them brush the symptoms aside, my son has been extremely lucky.

Name:: Amanda Busking       

Story::    Sorry I'm not able to be too technical with this. I'm not very good at writing things like this, but I figured i would give it a try. Well, for a few years, I had a reoccurring infection in my finger caused by simple bacteria. The first time I had gotten it, I needed to be hospitalized, and every time after that, I was put on antibiotics. The last time I had gotten it, we switched medications because I was becoming immune to the other antibiotic, so he put me on a medication (DURACEF), at 1300mg a day for ten days. Right after my treatment was complete, I began to develop tiny, extremely itchy blisters that were painful if touched on my face, which eventually spread to my lips and the roof of my mouth. Not knowing what else to do, my parents called my pediatrician and received the name of a dermatologist who, not knowing what it was, prescribed a cream. I was also told to take oatmeal baths to help the itching.
I’m also a type I diabetic, who is insulin dependent and on a rather strict diet, and my parents eventually decided one day to take me to the ER because my lips had become extremely swollen and I couldn’t swallow anything because it had become so painful. They diagnosed me with a minor case of SJS, gave me an epinephrine shot, and sent me home with Prednisone. At one point, it seemed like everything was going to be okay. Some of the blisters had broken open and became larger, and a few had developed on my legs and hands, but after while, it almost seemed as if it had healed. My lips had gone down slightly, and some of the itching had subsided…but not even three days later, the sores began to swell and blister around the edges, and my blood sugar was shooting up very, very high. That’s when we were finally admitted into the hospital.
The doctors had absolutely no idea why the hospital had sent me home after my trip to the ER, seeing as A.) I had SJS and B.) I was diabetic and on a steroid, which caused the insulin injected to not work at all, which in turn caused the high sugars. I was immediately put on an IV with a more powerful steroid, and every night had a steroid cream put on the sores…my sugars had to be taken every hour, and I was given nearly double the insulin I would normally take, with extra injections around every mealtime. When all of this happened, I was 15 or 16 years old…and I’m extremely grateful towards everyone who was there, because they were so careful and made me feel not as paranoid as I probably would have been anywhere else.
The sores themselves…well, I’m very lucky. I had them on my face, arms, legs, feet, hands, and inside my mouth. They were also around the cuticles of my finger and toenails. They left minor scarring, and most of them you can’t even see anymore, except for some on my legs, and one right where the elbow bends. The doctors were surprised at how well I recovered, and were also very surprised at how the sore themselves looked. At the point where we caught it, the sores were what the doctors called, “Target legions”, because they looked like little targets. We took pictures…when I find them again, I’ll scan and load them up somewhere.
On of the things that didn’t bother me about the whole ordeal that I thought would is being used as a example of an illness for student doctors. Sometimes there would be seven or eight students in my room at a time, and it didn’t really bother me at all. I figure that as long as there are more medical professionals learning of this, then less people have to suffer as badly. It’s such a scary thing…and I didn’t even have it that bad. My heart goes out to anyone who has this, no matter how “bad” of a case it may be.

Name:: Heather       

Story::    I had sjs at age 10 (the day i felt ill was 08/12 /80 the day John Lennon was murdered,following antibiotic treatment for tonsilitis.I was prescribed Septrin. I remember coming home from Brownies and saying to my mum that I felt ill. The next morning I hsd high tempreature & a rash. The doctor who came rightly said I had an allergic reaction to the septrin. A few hours later I was in total agony with raw skin. My own doctor came & I was rushed to hospital as the blistering started. I remember screaming with pain & having my night dress cut from me. I remember nothing for the next week or so when I remember waking up & seeing the blisters. I was treated as a burns victim I had photographs taken & had specialists in dermatology from all over the UK. To be honest I was so ill i cant remember a great deal about being in hospital for the first couple of weeks but I was on so many drugs I didnt know where I was. I had a catheter fitted as I could not pass urine I ws fitted with a tube to feed me too. I rememberthe pain burning from the inside out & once the blisters had burst sticking to the sheets. It was so painful. I was in hospital for six weeks and off school for six months.I remember seeing my hands as big blisters whwn I came to. If anyone wants to e-mail me please do I would particularly like to hear from women who would like to have children to see if sjs effects fertility or blocks fallopian tubes as am thinking about trying for a baby soon before its too late (im 34). I am one of the lucky people the only lasting effectts I have (that I know of) are scars & bad eyesight & hearing. If people could plese get in touch it would be appreciated. Particularly in the Edinburgh area as would like to meet up with someone else who has gone through this. My e-mail is heather.johnston@blueyonder.co.uk my phome is 0131 657 1063

Name:: jessica       

Story::    On Wednesday, June 17th,03. My son Sam presented with hives at noon time. By that evening the hives had spread but were still just that, hives. On Thursday morning the 18th the hives were turning purple and his legs were covered in red blothces. By Thursday afternoon almost 24 hours later, his entire body except his face were covered. The doctors were baffled. My son was 17 days old at the time. This apparently is very rare for that age. Without treatment the doctors admitted him for monitoring purposes. On Friday morning the rash was completley gone. The diagnosis was erythemamultiforme and the cause, the first of three Hepatitis B shots. Later the cause was the cold my two year old had had days earlier. My concern is for the future and weather or not this rash will come back. Please share any information you have, or stories at mudmansam@yahoo.com. I'm am looking for the cause, treatment, and future precautions. Thank You Jessica

Name:: Edward Perez       

Story::    My name is Edward Perez, I am 38 years old, married 14 years to my wife Kim. I have 2 children, Ethan 10 and Megan 7. We live in Corona, CA. I suffered a Grand Mal Seizure on Easter Sunday, 2003, and was put on Dylantin, 400 mg per day, and suffered a severe allergic reaction, but did not know it. The fatigue, mental and physical decline, swelling, liver and ammonia levels crazy, jaundice, were unknowingly attacking me . My neurologist admitted me to the hospital under SJS. Went thru the painful process of the reaction, the pain, secrection of fluid and toxins, battle with temperature, skin burning, fever of up to 105 degrees. Spent 12 days in hospital. Released, but then went to ER room June 14, evening with pain, arm and leg swelling, redness, secretions. Had to be transported by EMT.
I was having a rebound of the battle with the toxin in my system, and my doctors told my wife that night to go to ER. Doctor on duty did not call my doctor, sent me home with diagnosis of contact dermatitis despite my physical features. Little to say, we were shocked. The next day we went to urgent care, and a physician found a way to admit me. I thought I was not going to make it, but with a great doctor, and some agressive treatment, and the power of God, I turned better, and the SJS did not kill me. I made it out in 6 days. Currently I am recovering at home (as of 6-24-03) and seeing 4 doctors. Current health concerns I am dealing with are blistering and itching, opthamological issues, irregular sleeping, mental and physical coordination, stamina issues.
I don't want people to suffer this complex disease, especially suffer unnnecessarily due to ignorance, health money managers, drug companies. When I read about the children, and see their suffering, and I go through my story where I could have left behind a wife and 2 children alone, I want to see this group mobilize in awareness, emotional and grief support, and fund raising to help the victims and their families deal with this rare yet fatal disease. Lets be honest, SJS situation always has the potential for fatality. There is no little SJS case. I personally commit in any way to mobilize this group to grow, and to unify this community. Thank you for reading my story, I hope to see a future where those afflicted are treated with dignity and love, the families are supported, and those responsible for cause or pain are held responsible. I will work to raise funds or distribute information to aid the awarenesss movement.

Name:: Pam Brierre       

Story::    I have read the stories about all who have suffered and feel for everyone. Finding info in 1995 was hard. Finding is in 1980 was impossible. When I was diagnosed my family was baffled. When I was 16 I started to come down with a cold or flu, but being a teenager I kept going. By night I had 102 fever and was going from hot to cold. My mom gave me asperin. It happened to be in the bathroom cabinet near my room. By day two a rash had started on my chest so my mom took me to the pediatrician. A new doctor, fresh out of school, said it was probably a rash due to strep and did a throat culture. They sent me home. The rash grew overnight and by day three my eyes were swollen shut. I looked so bad, they didn't want me in the doctors waiting room. My doctor saw me and knew immediately what it was. He was nervous. Three children had already died that year from SJS (not his patients!). I was put in the hospital and the tests started.I had two opthamologinst seeing me four times a day trying to save my corneas as the illness attacked my eyes, two dermatologists, two burn specialists, two pediatricians and finally a doctor to monitor the steroids I was being given and work out the best durg regimen. Everything was a best guess. The treatments used so frequently now were not so refined.
The blisters rushed down my body, down my throat and over my face. My fever reached 104.5 and stayed there. I couldn't swallow and as my skin tightenend, it pushed out each IV. A cut-down was finally done. After a week of bare, blistering skin and a painful debreeding the doctors tried something new. SJS looks so much like a burn I was finally treated like a burn patient and wrapped like a mummy from neck to ankle (appropriate, given it was Halloween). Morphine was given each day so the bandages could be removed and changed. I lost thirty pounds and stayed in the hospital a month. I lost half my hair from stress and all my nails. The last of the sores were healed after about six weeks. The lasting effects are dry eye, though drops control this. The backs of my eyelids have some scar tissue, so I wear contacts to protect me eyes as well as to see, though the illness did not affect my vision. The scarring has caused my eyelids to turn in so my eyelashes scratch the eye surface, but I pull these daily and keep this under control. I have had one surgery to remove most of the offending lashes. I feel lucky now that I am reasonably fine. My biggest concern is now for my daughter who is to start taking an epilepsy drug. So many seem to trigger SJS. No one should have to ever suffer this horrible illness.

Name:: Amanda Busking       

Story::    Sorry I'm not able to be too technical with this. I'm not very good at writing things like this, but I figured i would give it a try. Well, for a few years, I had a reoccurring infection in my finger caused by simple bacteria. The first time I had gotten it, I needed to be hospitalized, and every time after that, I was put on antibiotics. The last time I had gotten it, we switched medications because I was becoming immune to the other antibiotic, so he put me on a medication (DURACEF), at 1300mg a day for ten days. Right after my treatment was complete, I began to develop tiny, extremely itchy blisters that were painful if touched on my face, which eventually spread to my lips and the roof of my mouth. Not knowing what else to do, my parents called my pediatrician and received the name of a dermatologist who, not knowing what it was, prescribed a cream. I was also told to take oatmeal baths to help the itching. I’m also a type I diabetic, who is insulin dependent and on a rather strict diet, and my parents eventually decided one day to take me to the ER because my lips had become extremely swollen and I couldn’t swallow anything because it had become so painful. They diagnosed me with a minor case of SJS, gave me an epinephrine shot, and sent me home with Prednisone. At one point, it seemed like everything was going to be okay. Some of the blisters had broken open and became larger, and a few had developed on my legs and hands, but after while, it almost seemed as if it had healed. My lips had gone down slightly, and some of the itching had subsided…but not even three days later, the sores began to swell and blister around the edges, and my blood sugar was shooting up very, very high. That’s when we were finally admitted into the hospital. The doctors had absolutely no idea why the hospital had sent me home after my trip to the ER, seeing as A.) I had SJS and B.) I was diabetic and on a steroid, which caused the insulin injected to not work at all, which in turn caused the high sugars. I was immediately put on an IV with a more powerful steroid, and every night had a steroid cream put on the sores…my sugars had to be taken every hour, and I was given nearly double the insulin I would normally take, with extra injections around every mealtime. When all of this happened, I was 15 or 16 years old…and I’m extremely grateful towards everyone who was there, because they were so careful and made me feel not as paranoid as I probably would have been anywhere else. The sores themselves…well, I’m very lucky. I had them on my face, arms, legs, feet, hands, and inside my mouth. They were also around the cuticles of my finger and toenails. They left minor scarring, and most of them you can’t even see anymore, except for some on my legs, and one right where the elbow bends. The doctors were surprised at how well I recovered, and were also very surprised at how the sore themselves looked. At the point where we caught it, the sores were what the doctors called, “Target legions”, because they looked like little targets. We took pictures…when I find them again, I’ll scan and load them up somewhere. On of the things that didn’t bother me about the whole ordeal that I thought would is being used as a example of an illness for student doctors. Sometimes there would be seven or eight students in my room at a time, and it didn’t really bother me at all. I figure that as long as there are more medical professionals learning of this, then less people have to suffer as badly. It’s such a scary thing…and I didn’t even have it that bad. My heart goes out to anyone who has this, no matter how “bad” of a case it may be.

Name:: Aaron Smart       

Story::    hello im 24 and live in b.c. i didn't even know there was a syndrome that could do what has happened to me 3 times this year alone. for me it starts with a swelling painfull drive you crazy itch and in a bout 20min my the palm of my hands are bloched red it takes all my power to not itch nowing it will only make it worse. then it spreds to my lips then into mouth the roof and the top of my toung. blisters form on my hands and my feet that are full of a clear sweat. the only food that i can eat as painfull ass it is is little peaces of soft bread followed by a straw and water. that was my last outbreak i took about 12 days to feel normal again.but each time i get worse first time i only had it on the palm of my hand lasted a week. second time this year 2003 on my hands and on my lips and as you just read was my third... any info i could get that has helped you that you could share with me would be very much wanted i mentally only think i can go trough the pain 2 more times if it get worse. thx

Name:: Andrea Webb       

Story::    I'm 21 now and until last year I ran a normal life on October 7, 2002, I went to my regular doctors office because I had a weird rash on my hands and feet and stomach and I and some irritation genitals. A weird combination so he gave me nothing sent me home and told me not to stop my medication i was taking. i was taking Welbutrin and cipro anti depression and bladder infection medication) but i didn't take them any more the next morning i had swelling and irritation now in my eyes mouth and vagina with a fever of 102. so i went to the hospital the gave me eyedrops for pinkeye and lidacaine for my mouth and vagina. I then was diagnosed with a viral infection. they also did not tell me to stop my medication. so i did the eyedrops and lidacaine then the next morning i woke up my eyes were just barely open and i had blood blisters in my mouth and blisters all over my face and neck. i woke my Mom up and she took my temp i was at 105.7 she was freaking she called the doctors office and she told them how i was they told her to take me back to the hospital. we went in and when i got to the hospital my fever was at 107.2 and my Mom was worried about me going into sever secures. the doctor came and a said she's got Stevens Johnson syndrome and said but her in ICU. so to ICU i went. the next day i called my Mom from the hospital and said Mom should i be breaking my blisters open? because the was on my chest that was huge and bothering me. when she got there the doctor said there was nothing they could do for me there the were sending me to St. Agnes in philly they had a burn unit there that might be able to help me. so there i went. i was there for bout 3 weeks and i only remember 2 days went i came off of the pain meds and relaxing drugs. my Mom said i was 2 hours from being put on a breathing machine. and they had to cut open my eye lids to open them because i had blisters on them. but now 7 months after my only real concerns are my eyes and vagina always dry and irritated hope that Stevens Johnson syndrome TENS starts to become a more open to doctors around the world. I'm trying to get into the Boston eye foundation for sight and I can only hope that it helps me the way it helped Julie. God Bless

Name:: quintus wrighten sr       

Story::    In 1979,I developed SJSnwhile in the USAF. We went out into the field for a week and when we returned to the base a day or so later I was covered in vlisters and had lesions in the mouth and eyes. Initially the doctors did not know what it was and I was given Penecillin. After taking that medication the situation worsened. Finally a doctor came and explained to me what was going on. He stated that I had SJS and they began giving me Prednisone and I have been taking it ever since.Over the past few years many things have been going wrong with my health; diabetes,cataracts,polyperiphial neuropathy,weight gain, mooning of the face,mood swings,broken bones and the list goes on. I have been fighting with the VA and Social Security to get the benefits that I deserve and the fight goes on. I have lost several jobs and it is becoming increasingly difficult to provide for my family.

Name:: Betty Tyler       

Story::    Hello my name is Betty and I just lost my daughter to toxic epidermal necrolysis two month a go.I had no ideal that this sort of thing could happen my daughter was only 24 years old.When she died I want to tell you a little bit about her,at the age of twelve she develope somthing that the doctor call autoimmume disorder.Where all of her major organs were being distroyed the first thing happen is that this thing actact her kidney and she had to go on a kidney machine,and then sdhe started lousing her hair. And then skin discolouration and then it took hold on her eye's which left her with iritas where she had to use eye drop prescrived by the doctor,she was put on differance medication for differance thing tha started happening to her.The las thing that happen to her was that she started haveing convoltion and the doctor's put her on dialantion after about a two or three day's we started seeing mental changest in her. so we took her of of the dialantion, and she started having convoultion again and we took her to the emeragency room where the doctor put her back on, and I ask them qestion about that mediction. And the side eff that it had and they told me that the dialantion would not couse the thing that was happing to her. she was put in the hospitly for 7 week and while she were there her skin started coming off it started on her backside and then all over her body the sligisted touch would,bring off her skin we could not even move her because of the bad way her body was.And then the hospitly she was in ent her to John Hopkins hosp, the doctor there told me the she had what they call toxix epidermal necrolysis and that what she died of I would like to read more about this disease.So that I can shear it with other, that don't have axcess to the internet so pease send me more info. Betty

Name:: Ken       

Story::    In 2000 I had what I thought was a sinus/ear infection, I went to my doctor and he prescribed Bactrim. Until this point in time I never had any drug allergies. Of course as usual, upon going to the doctors and prior to taking my prescription, my symptoms of the sinus infection began to get better. I began to take the Bactrim and by day 2 began to get a small burn/blister on my penis. My initial thought was that is resembled a chemical burn and quickly figured it was my laundry detergent. I switched detergents and at the same time, not making a connection between the two, stopped taking the Bactrim as I felt better and kept forgetting to take it. After about a week the spot on my genitals healed and I forgot about the entire incident. Probably 8-9 months later I once again had a sinus infection. I had a cat at the time and had a never ending sinus infection. I went to the doctor and he prescribed Amoxicillin. After several days of Amox. The symptoms of the sinus infection got worse so the doctor gave me Bactrim. On day 2 of the Bactrim I once again developed a burn/blister on my penis. This time the Burn/blister was considerably larger. At the same time I developed what I thought was a fever blister on my lip. All the symptoms concerned me as I couldn't understand where they were coming from. The burn/blistering kept getting worse and spreading. I went to the doctor. He had no idea what was causing it. He agreed that it appeared to be similar to a chemical burn but it was getting worse and remained wet and raw. He recommended a cream that was an antifungal and thought that the cream should help. After I returned home I began diagnosing myself, remembering the last time it had happened and I determined that is was a reaction to the sulfa drug Bactrim. I surmised at that time that is was from my urine. I stopped the Bactrim and called my doctor for a different prescription. He again remarked that he never saw anything like it before and didn't know what it was. When I told him I thought it was the Bactrim, he felt it was not a normal reaction to a sulfa drug and doubted it was due to the Bactrim. Even so he prescribed Augmentin. I tried in vain to find anything on the Internet about reactions to Bactrim and found nothing. It took over a month for my genital area to heal. I had to take time off from work as I couldn't wear any underwear. Urinating was incredibly painful and I worried about scaring. I had to dress it and wash the dead skin off. It finally cleared however there is some scarring and discoloration. It was a horrible experience and one that, up until this point, never knew what it was. I am glad I found this site. It explains a lot. Thankfully my symptoms were not as dramatic as others nor had it progressed for very long before I stopped the antibiotic. When I saw the pictures of these poor folks I recognized the burn and dropping skin. It is exactly what I had. To date I have had other antibiotics and have not had any reactions nor have I had any fever blister ever again. I will not take Bactrim again and have listed it as an allergy drug.

Name:: quintus wrighten sr       

Story::    In 1979,I developed SJSnwhile in the USAF. We went out into the field for a week and when we returned to the base a day or so later I was covered in vlisters and had lesions in the mouth and eyes. Initially the doctors did not know what it was and I was given Penecillin. After taking that medication the situation worsened. Finally a doctor came and explained to me what was going on. He stated that I had SJS and they began giving me Prednisone and I have been taking it ever since.Over the past few years many things have been going wrong with my health; diabetes,cataracts,polyperiphial neuropathy,weight gain, mooning of the face,mood swings,broken bones and the list goes on. I have been fighting with the VA and Social Security to get the benefits that I deserve and the fight goes on. I have lost several jobs and it is becoming increasingly difficult to provide for my family.

Name:: Jacob Barbour       

Story::    After reading the stories on your website, it seems Jacob could have been a lot worse. However, when we were going through it, it seemed like the worst! Jacob is 9 years old. Last January, he woke up one Sunday morning with what we thought was pink eye. He had had a pretty bad cold, but didn't seem unusually sick. We found out later that he had pneumonia caused by mycoplasma, a common trigger for SJS. By Sunday night, his eyes were atrocious and his lips looked like they were severely chapped. Monday morning, we would have never expected what we woke up to. Jacob's cheeks had swelled up like a chipmunk. His lips were swollen 3x their size and oozing puss. The whites of his eyes were almost completely red and oozing puss. We called the pediatrician and they had him come in right away. Dr. Mark looked him over. I hadn't thought to look inside Jacob's mouth...It was covered in layer upon layer of yellow globs and smelled really, really bad! Anyway, Dr. Mark left and brought another Dr. in to look at Jake. Then he left again and came back with a big book and showed it to me, pointing out the entry for SJS. I am so thankful that he was on top of things and knew right away what it might be. He sent us home with instructions on how to keep Jacob as comfortable as possible, and told us to call immediately if he continued to get worse. Well, by Tuesday morning it had been 2 days since Jacob had really eaten and he was now refusing water. His lips were also turning black and his eyes were turning purple instead of red. He also screamed in pain whenever he had to go to the bathroom. Apparently, his urinary tract and his bowels were involved now too. So, we called first thing Tuesday morning and Dr. Mark sent us right over to be admitted. Jacob ended up spending 7 days in the hospital. He had nothing but IV fluids for 5 of those days. His lips sloughed off black slime constantly for the last 4 days of his stay, plus another week at home. He ended up losing 12 pounds, which to an already skinny 9 year old, was like an adult losing 50. His eyes stayed red for a good 2 months after the whole ordeal started. They still aren't bright like they used to be. All of Jacob's fingernails and toenails fell completely out. He still has problems with the opening of his penis sticking sometimes when he has to go to the bathroom. He also tires more easily than he used to. On the positive side, though, is the fact that he had no permanent damage to his eyes. The opthamologist gave him the all clear in March. He did have slight tearing of the lining in the corners of his eyes, but it all healed up completely! He also has not had any mouth flare ups, which we were told to expect. We feel very blessed that Jacob seems to have made a complete recovery and we hope we never have to deal with SJS again. It is a horrible disease.

Name:: K. Bartley       

Story::    Hello, I am contacting your group because I had a very bad reaction to the prescription drug Singulair. Though Singulair is not mentioned in any of your reports, I had also been prescribed Bextra about a month prior to this reaction. I took only 2 doses of Bextra, a 20mg and a 10mg and quit because it made me sick. Aproximatley 1 month later, May 15, I my doctor gave me a sample of Singulair. I took one 4mg tablet and within two hours developed very scary symptoms. I got severe arthritic pains in my lower back and legs and my legs and feet went numb. I called the next morning as I couldn't reach the doctor after hours. I was told I was having an allergic reaction to Singulair and to stop taking it. The symtoms did not go away but seemed to subside. However, the next day I began to get sick with a severe flu like illness and ran a temp. of 101.5 for 3 days. I had tremendous sinus drainage and coughed up large quantities of mucus out of my lungs. I felt like I was drowning. I couldn't get out of bed for a week. I was unable to eat any solid food. The arthritic pains in my back and legs continued and I was weak and debilitated. It is three months since these events and I am not appreciably better. I still cannot eat solid food, I have arthritic pain in my back and legs, I cannot walk for any distance without weakness and then pain. I have no strength and have now been told that blood tests show a rheumatoid factor. I believe what has happened to me is a result of the prescription drugs I took, Bextra and Singulair. Thank God I only took small amounts or I would probably be dead. I searched for information about allergic reactions from prescription drugs and found very little until I located your site. It is an answer to prayer. Please continue your good work. Thank You.