Read SJS/TEN Stories, Page-9

Name:: Leslie Fabriz

Story:: Dear SJS Foundation, I had SJS when I was only 11 years old, in 1988, and there was little information on SJS. I was just a little girl, and my mom had taken me to the doctor because she thought that I had an ear infection. They prescribed me a type of amoxicillin for children (they were chewable and tasted like bubblegum). It did not work, and worsened my symptoms, I still had a fever, and was tired all the time. Blisters started to form inside my mouth, and on my genitals. My mom had put two-and-two together at this time, and told me to stop taking the antibiotics. My symptoms got a bit better, and I was able to return to school for a couple of days. On the Saturday after that, I woke up covered in large blisters, some about the diameter of a quarter. They covered my legs, arms, genitals, and covered my scalp. I knew that it was serious when I looked into my mom's eyes, and she said "we're going to the hospital". There were very few cases of SJS up to this time, and my doctor was very young, and only a couple of years out of medical school. She called a pediatrician who had more than 30 years of being a doctor, who was able to find out what I had, and treat the SJS. It was kind of neat, because i had medical students come over 100 miles to see my case of SJS. At the time, while I was sick, I felt like a freak, a person from another planet, and people looked at me funny. I was in an isolated room all the time, and was very sad. I got through it, though, and am able to write this 15 years later. The strength of my parents and brother were unprecidented, and i truly feel that I am lucky and blessed to have the strength of family to pull me through. So, if anyone out there is reading this, and has SJS, there is hope, I got through it, so can you.

Name:: Justin Jiminez

Story:: Two days before Mothers day (2003) My 10 year old son,Justin, complained of strept throat. This was the 6th time in 1 year. I gave him Ibuprofen and told him to tell me if it got worse. The following sunday was mothers day. Justin woke up and said his throat had gotten worse. We took him to the walk in clinic where they did a strept culture. Within minutes the culture came back positive. The DR recomended Justin see an E.N.T. So they scheduled an appt. for the next day, and gave us a prescription of antibiotics. On the way to the pharmacy I noticed red dots appearing on Justin's face and neck. We decided to hold off on the medication untill we seen the E.N.T. When Justin woke up monday morning his entire body was covered in smooth red dots. His fever was still above 101 degrees despite using ibuprphen every 6-8 hours. He was losing his energy and when asked how he was feeling all he could describe it as was "not feeling very good". By the time we arrived at the E.N.T's office you could watch his rash grow.The E.N.T said he wanted Justins tonsils out but mentioned nothing about his obvious rash. Before he could get us to the door I asked about the rash. The DR said give Justin Motrin and Benadryl. By the time we arrived home(about 30 min) the red dots had started to combine making large red patches. That evening Justin's body looked as though he had been badly sunburned. For the first time since all of this began Justin started to cry.(Hours seemed like days) He was itching and nothing seemed to be able to soothe him. So we took him to the E.R. All of the staff came to look at Justin as though he had been in a "freak show"! Fine if it were to figure out what was wrong but that wasn't thier intent. The DR came back with his diagnosis, he said it was "psoriasis" I knew in my gut this guy was way off. He prescribed Justin a new antibiotic told me to give him ibuprofen and Benadryl and sent us home. We returned to our humbled spot on our couch and missed out on another night of sleep. Justin was woken every so many minutes crying from the itching and I slept with my eyes open watching Justin's rash progress. When we got up tuesday morning his rash had almost turned his body into a solid bright red burn. We took him into his family DR where they all stood almost in shock. The DR said he had never seen anything so dramatic in his life but had no idea what it could be. He sent Justin for some blood work and sent us back home. By the time we got home Justin had again worsened. I could really see his health deminishing. I called his Doc again, and the DR got the blood work back immediatly. It only showed an elevated white blood cell count. The DR instructed us to return to the ER if there were any changes. And of course there were. We returned to the ER Tuesday night. ANd again the DR's were shocked by what they were seeing. There he was treated by DR. Todd Tornay. Dr Tornay tried to figure out what this was but couldn't come up with anything. (I know he tried hard) He gave Justin a dose of motrin, I.V. fluids, and Steroids via I.V. Justin showed improvment and was sent home. Wednesday morning he continued to showed mild improvment. Though little I welcomed it. That night Justin began to cry more than I had ever heard a child cry before. Again the itching was out of control. We arrived back in the ER around midnight where Justin was treated by Dr.Underhill. He took one look at Justin and said "this is Stevens Johnson syndrome". I just shrugged my shoulders because I had no idea what he was talking about. He also told me that people have died from this. I think I lost my heart at that moment. Dr.Underhill assured me that Justin was in the clear and that he would be just fine. Dr.Underhill got out a book and showed me pictures of this disease. Thursday morning I began my research. Justin continued to recover and I kept my nose on the internet.Friday came, Justin looking great told me that in the midst of it all he wished he was dead so he wouldn't have to look or feel the way he did. My heart broke for him. I just want to thank Dr.Tornay for trying to help Justin with a loving and compassionate heart. I want to thank Dr.Underhill for having given me a name to this horrid condition. Dr. Underhill also commended me for continually seeking out an answer and not giving up. I would mostly Like to say "Justin I am so proud of you" You showed me courage, Hope, Patience, endurance, and humility with Grace! All these things plus you maintained your sense of humor! You are a teacher to me :) I LOVE YOU!!!!! Thank you again SJS foundation for giving us a place to go Jodi L. Ojeda Redmond,Oregon

Name:: Vickie House

Story:: Hello, I almost forgot about The Stevens Johnson Syndrome. My daughter had a reaction to antibotics when she was about 5 and was admitted to the hospital for an infection of her foot. The antibotic she was taken was penicillin. She had a rash that was itchy ( as ahe called it). She had red swollen rashes all over her body. The attending doctor finally realised it was SJS and started to give her another anibotic for the infection, but not after she scratched her little body and cryed about it itching her.I'm glad she fully recovered and I am glad your out there informing the public about this issue that many people dont know about..Thank You!

Name:: Leigh

Story:: I consider myself extremely fortunate compared to some of the poor souls I've seen and read about. Nevertheless,I have passed kidney stones and the pain from SJS is a lot worse. With the stones the pain only lasted 4 or 5 hours until I passed them.With SJS the pain was unrelenting 24 hours a day for about two weeks.On a scale of 1 to 10 this was an 11. My good fortune was due to the fact that none of the doctors were able to diagnose my condition so they left me to suffer without any medication. My blisters were the tiny ones that covered every square centimeter of the inside of my mouth, tongue and throat and lips.My mouth was so sensitive to touch that I couldn't eat or drink.After becoming almost completely dehydrated and unable to eat for four days my dentist had a brilliant idea. He prescribed a solution of novocaine for me to swish around in my mouth so it would be numb enough to use a straw to drink.Since I also have asthma and a propensity for glaucoma my not taking any antibiotics probably saved my life and eye sight.I fully recovered, but was blissfully unaware of the seriousness of this condition until, thanks to a chance encounter with a retired Surgeon General of the U.S.I was properly diagnosed. Until I discovered this web site, however, I didn't realize this could happen to me again. Better late than never, I called my doctor and told him to flag my folder in case I become sick with something else and am prescribed medication. I am going to send him a fact sheet right away.

Name:: fattah

Story:: Aug 2003. My name is Fattah Day I live in Puna Hawaii and 4yrs. ago I started having blisters on the inside of my lips and cheeks. Sometimes totally incapacitating me. Sometimes they were watery, mostly they were blood filled. After almost a year of tests including lab analasys of blood samples and smears of active blisters, the AMA in my reagion had no idea, and said that the best they could say was that it was probably some virus I might have picked up in South East Asia ,imbedded deep inside me. I happen to stumble into a Chineese Herbalist & Accupuncture office one day ( a man who had spent a conciderable amount of time in India treating 1000's of patients ). Since my lips were blistered and swollen and my throat half closed I couldn't talk to him. He took one look at me and said, "what happened to you, your liver looks like its on fire, if you don't mind I'll read your pulses and give you accupuncture I can make you feel better in 30 minutes." While his assistant brewed a tea of some pungent herbs he did needles on my body, and 20 min. later my lips and mouth blisters were down so that I could talk. There were raw sores but I had energy, and ina total of about 1 1/2 hours I was at least 80% better. Now its four years later and I don't break out anymore. Its been a long process of seeing 4 different Chineese herbalists (mostly to conferm my own doubts and progress with my origional Chineese doctor.) He has been changing my accupuncture and herb recipe weekly after reading my pulses, to fit the slow building of my body back into a place that it can strengthen itself. Along with this a carefully watched diatary regime had to be followed ,that we worked out, to keep the heat and inner dampness in check. My age today is 62 and I have the overall health of a 40 yr. old my AMA & Chineese doctors tell me. I feel great everyday... There is specific herbs and foods that must be followed to accomplish this. This email address may not ever be checked again
I only opened this email address as a onetime online to get this info out to anybody that maybe could use it.!!! If I can help write: FATTAH POBOX 894 PAHOA HAWAII 96778

Name:: Karen Fraser

Story:: My story is about my personal experience after taking oral Bactrim for a urinary infection. I am alergic to Penecillin so the Doctor prescribed Bactrim. I had taken about 9 tablets and then this happened... I woke up one morning and felt like I had the flu, I was really hot and couldnt sleep. I woke up my boyfriend and he took one look at me and said we are going to the hospital. I couldnt think straight. I went to the bathroom and looked in the mirror and couldnt recognise myself. In a daze I went to have a shower and collapsed. At the hospital I was in emergency for eight hours until they stabalised my heart rate and temperature etc. I couldnt see property and my lips were so puffy I couldnt speak clearly. I was so scared not knowing what was happening. My body began to itch and I couldnt control myself scratching the blisters that had now appeared all over my body from head to toe. I had blisters all over my ears, and they also covered my face.. neck, stomach etc. The only place I didnt get any blistering was underneath my feet. I knew I would scar if I scrathed uncontrollably but I just couldnt stop it. The doctor put me on a drip which eased the itching, it was a great relief. I was admitted to hospital which was my home for the next two weeks. My worst moment was waking up in hospital the first morning, not being able to see (as my eyelids were glued shut my the gunk that had formed) and my lips were also glued shut from the blisters and blood. I woke up very scared. My condition stayed like this for the first week. My first week in hospital resorted to me not wanting to live. It hurt to sit, to lay down, to talk, to go to the toilet and to cry. I could see no light at the end of the tunnel and didnt want to feel that way anymore. It was so hard for my family to see me like that, I remember seeing a little boy who would have only been about 3 years old, he was visiting is nanna beside me. He took one look at me and started crying, I felt like a monster. The second week after the weight dropped off me (I went from 50kgs to 42kgs) I was determined to try to eat. The blisters inside my mouth and on my tongue made it feel like it was impossible to drink & eat. After all even water hurt. I asked the nurse for a large syringe (without the needle part) and I got my mum to buy me runny custart and baby food, I syringed it down my throat. I had to gain energy from something, I felt like I was turing into a vegetable and fading away day by day. Each day that passed I could get more and more down. Once I could get some custard and mashed potato down I asked to be released. It was so strange to be in the world outside again. The light hurt my eyes and sun hurt my skin. I slept and slept when I got home. One week after I got home my eyes started to really hurt, I went to the doctor and was refered to an eye surgeon. The scaring was very bad on the insides of my eye lashes, I have been told that an operation is inevitable to turn my eye lids back to how they were. (They are turning inward and that is making my eyelashes hit my eye ball) I was home from work for about three months, it was still very hard to manage a day at work, but money was a huge factor in why I had to go back. I am still recovering, it happened in 2001. (I was 24yrs old) To this day I am plucking out eye lashes that are growing at an angle to hit my eye ball, it is very frustrating. It took about 6 months for the 'dots' to dissapear from where the blisters covered my body. It was the worst experience of my life, you wouldnt wish it upon your worst enemy. Thanks for listening.

Name:: Mary Doherty

Story:: Fourteen years ago my son, who was twelve years old at the time, was playing on a soccer team. High underbrush and woods surrounded the practice field. Often Daniel would run into the underbrush to retrieve the ball. His first symptom was a rash that started high up on his inner thighs and continued down toward his knees. It looked as if someone had thrown hot water on him - scalded looking and deep red in appearance. Our pediatrician told me he had poison ivy. Since I had nursed him through several bad poison ivy reactions, I knew how it manifested with large fluid filled blisters. I knew that this diagnosis had to be wrong but the doctor insisted she was correct. About two weeks after this discoloration on his thighs started , he awoke one moring in extreme pain with the typical SJS leisions and blisters in and around his mouth and eyes, ears, etc and a very swollen and painful scrotum. The pediatrician's answering service contacted her at 7:00am She called back and referred Daniel to a dermatologist for a 2:30 pm appointment. My son was in tears and could hardly walk but we were waiting for the dermatologist when he arrived at his office at 9:00am. The nurse had put Dan on a bed in an examining room. The doctor and I stood in the doorway and literally watched the rash/blisters crawl across the side of his face and down his neck. Fortunately he came up with the SJS diagnosis fairly quickly although being rather young he said he had never seen an actual case before. His first inclination was to hospitalize Daniel but he decided because of the severity of the condition (being covered with open blisters and leisions) Daniel would be at further risk of picking up other infections in the hospital. He sent us home with a large paper bag of at least seven medications. This was on a Friday and that wonderful doctor called us every 4-5 hours over the entire weekend. We returned to his office early on Monday morning. Daniel started responding to the medications almost immediately and recovered over a period of a couple of weeks with no further complications. We were at a loss to find a cause since he had not been on any medications for 6-8 weeks prior to the onset of SJS. The only conclusion we could come to was that he had a reaction to yard chemicals. We had had our yard professionally sprayed for weeds the week before all this started (first and last time we ever sprayed)and even though we kept the children and pets out of the yard for 48 hours, he must have had a reaction to some chemical used on the lawn. We contacted the company to see what chemicals they had used and after many phone calls and finally DEMANDS we were informed that none of their chemicals were harmful. We could never make a sure-fire connection but we are convinced that the lawn chemicals were the culprit. Fourteen years ago nothing was ever mentioned about complications from SJS. I'm sure probably the doctors didn't know nearly as much about it then. After reading some of the stories here I realize that my son was extremely blessed not to have suffered any complications or permanent damage. It was certainly a very frightening time for us. We had no internet to turn to for information - just medical books and the doctors. This is a great site for information. I am so glad it is available. Keep up the good work!

Name:: Sarah

Story:: Hellow from West Palm Beach FL. For years I have been looking for a support group, a web site. Other people out there with SJS. I have the same story everyone else has. I’ve been told I had gotten an ear infection and was put on sulfa for just about 2 weeks when I started with the blisters. By the second week my fever was high. My mother tells me she couldn’t keep it down. She took me to the ER where my parent’s was told I have SJS from taking sulfa. They put me in ICU for 6 wks. I’m told the blisters got much worse, I couldn’t be touched. They treated me like I was a burn victim. I was covered from head to toe, as well and inside every part of my body that has mucus membranes including my eyes. They tell me I came so close to dyeing a couple of times. I think it’s a good thing I don’t remember any of it. You see I was only 2 and a half. The years that have followed have brought me more pain than one should ever have to live with. Growing up my class mates where cruel to me. My eye lids have what they have called wild lashes growing inward rubbing my eyeballs. Because of the swelling of my eyes at times my lower lashes would just roll up and rub as well. I have had countless surgeries freezing eye lashes, removing lash bed, reconstructive surgery on my eye lids. Mostly the right eye. I never trusted Docters or nurses. From the time I was about 6 I remember that’s when the surges started. How does a young child tell the Docters when they put any kind a light in my eyes, it feels like the are poring lie in my eyes. I fought like HELL every time I went to the Dr. I could put up such a fight it would take so many people holding me down. Now what child should have to be held down? The corneas were destroyed so bad Docters say they look the moon. I could only see shadows from the right eye as the years went by so did the little vision I had. When I was twenty one I started researching SJS on my own. I needed to under stand. I only sought out Doctors who know how to treat SJS that has affected the eyes. I’ve lived my life being the genie pig. {Let’s try this.} {I would like my med students to also see you.} After years of this. “A grown up” I started saying NO! Dr. Cliford Salenger in West Palm Beach is a true blessing. In Feb. he did a parcel cornea transplant. I had a very high chance that it would not work because of SJS. The scaring that was already present. It did work. I haven’t seen out of my right eye this well since I was a child. Oh did I tell you I’m another old timer with SJS. If you are a parent of a child of any age that has SJS that has damaged the eyes, you need to know how the child feels when a light in turned on in the room. When they first wake up, it will take time to adjust to the light. Hosp. lights over a bed are the worst!! If your child is at least 5 or 6 talk your child through every thing. They need to know what’s happing to them. This all happened to me in 1963. Not ONE day has ever gone by that I’m not reminded that SJS will live with me forever. It only takes walking by a mirror. Less than 6 people a year out of a million will be stricken with this. AND STILL THE DRUGS THAT HAVE COUSED SJS AND TEN ARE STILL OUT THERE. I won’t let Doctors give any one in my family sulfa. They try to tell me at times it’s the best thing to treat serten types of infections. SO!! NO!! I’ve been looking for you for so many years. I would love to hear form others that are dealing with SJS. Please get in touch.

Name:: barbara baker

Story:: Hi, my story began last November. I went into the hospital for elective back surgery. Four days later after routine daily check, I was told I had an infection at the surgery location. I was given two types of of drug to combact the infection. two weeks or so I noticed red marks on my skin, arms, legs, torso. Although they were taking blood daily, checking vital signs, no one mentioned the red marks, that soon turned into blisters. The blisters began to spread into each other. No one told me what was happening to me. Finally, I asked an aide if she knew what they were treating my skin for, and she was the first one to mention SJS to me. I confronted the first doctor I saw the next morning, and he told me to ask to see the dermotoligst. It took several days of asking before I knew how serious it was, and as yet, months later, I still do not know what I can do if anything, to help myself. I have lost most of my hair. have terrible scars on my torso. legs and feet. I have numbness in my hands legs and feet. My eyes are dark, and dry, my gums sor at times. The doctor told me to get Rogaine for my hair and use a bleaching cream for my scars. I am told I am allergic to Timentin, Vancorycin. The doctors wanted to give me some of the drugs again to see which one did the damage, but I said no way.

Name:: Rebecca

Story:: This is a story about my Mother, Susan. In September of 2001, my mother called me from Chicago saying that she had itching on her head. She (being a crazy, wonderful Sicilian woman) was worried that she had gotten headlice. I immediately asked her many questions and at one point, realized that she had switched shampoos. At this time I told her to take some Benedryl and it should be alleviated. The following days consisted of her numerous phone calls complaining of the situation getting worse. Finally on the eigth day I called her after not hearing from her for the day and she cried saying she felt like she was "on fire" and she hung up the phone on me. I immediately called my father and family and drove from Madison, WI to Chicago to see her. By the time I got to Chicago she had been admitted into the hospital with Erythmya Multiforme. This diagnosis did not set well with me so I immediately began my own search. By this time her head was as swollen as a basketball and she had blisters the size of oranges from her chin to the soles of her feet. I cannot recall the horror to any other people, who do not understand what our family had gone through. I cannot express my disatisfaction with medical staff who refuse to listen to anybody without an M.D., but it was definitely tiring emotionally. Finally on the 3rd day they transferred her to Loyola University Hospital in the Critical Care Burn Unit. She was there for 4 weeks, where it was a constant medical roller coaster. At one point her liver began to shut down, her kidneys were shutting down, she had bilateral pneumonia, and congestive heart failure... I remember crying one night... "I'm too young to lose my mother!" After she was discharged from the hospital we relocated our family back in the Chicagoland area - since she needed much more care than a nurse could give in a single visit. The worst day - it seems now, was when her hair was falling out. My mother had long, jet black hair down to her waist, beautiful, full and wavy. I had always played with her hair as a little child and still would twirl my fingers in it. I went with my mother to have her head shaved and I just stood there crying and crying, holding her hand. It was very intense, because I realized during this that it was almost all over... this was the last hurdle. Her hair has grown back now, but it is wild and crazy and almost all grey, but hey... Luckily the disease did not affect my mother's eyesight, although she has scars on her limbs and trunk mainly. Although it did burn her sweat glands and this has been somewhat problematic, for her comfort. They able to pin the reaction down as resulting from the shampoo, but it almost unbelievable to imagine that, or ask anybody else to even understand. I am glad to find this website, as it is somewhat comforting to me... an acknowlegement of sorts.

Name:: Victoria Harrington

Story:: In the early eighty's I suffered from this syndrome because of drugs that I was given during a operation. I was never told that I could die. My parents told me after 4 weeks of quarinte. The doctors took pictures . I was so upset and could not see my eyes were closed. The doctors pulled something from my eyes every day. I have just been informed that I should be compensated/ because I still have problems and I am looking for help

Name:: Mary Doherty

Name:: Sarah

Name:: Karen Fraser

Name:: Carlo Colonna

Story:: My son, Lorenzo, 8 years old, in November 2002 had a SYS. He presented lesions (little ulcers) at level of gums, lips, hands and feet, with itch, pain and fever. There was a progression of this syndrome the days after: other lesions also at level of legs, arms, genitals and thorax. In the Pediatric Hospital he was treated with a lot of drugs iv: antibiotics (penicillins, cephalosporins, clarithomycin), antiviral drugs, drugs for pain and local antimycosis. There was a progression of ulcers, the days after, particularly in the mouth, with pus and blood, and also at level of the thorax too. Only a lesion at level of rima palpebrarum. No internal problems (perhaps at level of oesophagous, but was impossible to perform an endoscopy). We were afraid for the life of Lorenzo. He didn't eat for days and general conditions were getting worse and worse. After some days, the decision was to give him cortisone (750 mg iv). The progression of illness was interrupted and Lorenzo was recovering day by day. The cause was virus? There was no correlations with herpes, mycoplasma, other virus or bacteria after blood and cultural test. But the problem is that Lorenzo, in March and August 2003, had other two manifestations of SYS. These events were in relation of previous diseases: in March pharyngithis (treated with antibiotic), in August an aphtha at level of gums (no drugs were given him in this case). These tho events of SYS appeared 5-7 days after the pharyngithis and aphtha, with some little ulcers at level of gums, lips, hands and feet. In Hospital Lorenzo was cured with antibiotics (penicillin) and cortisone (750 mg iv in the first days). In all two cases Lorenzo recovered after 5-6 days. The diagnosis was: SYS relapsing after virus infections. This is the story. The questions are: 1. Is there a possibility to prevent these events of SYS after virus infections? 2. Is there a Center, an Hospital, a Specialist, a Doctor in Italy or in Europe to help us? 3. Is there the possibility that these events will deseappear in the future? 4. I want to help my son, what mast I do? I'm sorry for my English, thanks fo your help and your answer, best regards. Carlo Colonna

Name:: Sadhan Biswas

Story:: Recently (on July 10th) my brother Mr. DURJAY BISWAS, a 17 year school boy was admitted in a city hospital in Calcutta (India). After 20 days of treatment he recovered fully from TEN but during our days of tension I visited this site and found some useful info and others' stories. Me too want to share our story so that it could be helpful for others. Following is the Clinical summary given by Dr. DHIMAN SEN who was in charge of my brother's case :
CLINICAL SUMMARY
"Mr. Durjay Biswas, 17 year old normotensive,non-diabetic boy came with the history of high fever for 2 days followed by generalized erythema,blistering and skin desquamation for 1 day & severe pain in all 4 limbs. Patient gave a history of exposure to Aniline dyes during chemistry experiments at school and took Roxythromycin & Paracetamol after the onset of fever and following the appearance of erythematous rash. There is past history of drug allergy to Penicillin & Ampicillin with features suggestive Erythema Multiforme. In hospital he developed extensive bullous lesion and desquamation of almost 80% of body surface area including the genitalia but sparing oral mucosa and conjunctiva.He was treated with barrier nursing and supportive measures. He received Inj. Cephazolin 1 GM 4 TDS*3days for bullous impetigo around mouth. Subsequently he developed fever & evidence of UTI(KLEBSEILLA) & treated with Targocid (Teicoplanin) & Amikacin.Steroids were not given.4 Immunoglobulin was discussed with relatives and decided against. Consultation was given to Dr. Sachin Verma & his advice taken about management of TEN through the course in hospital. He recovered quite fast with adequate re-epithelization and is presently fit for discharge. There was no evidence of corneal scarring or phimosis at discharge" ........... Dr. DHIMAN SEN

Name:: Abbie

Story:: I've had SJS/TENS twice in my life. I'm 24 now and I had SJS when I was 11. And I had another allergic reaction last year. My doctor who treated me also when I was younger said that this time it was TENS. I was having seizures when I was 6. It didn't happen very often so I guess the doctor didn't want to prescribe anything. But when he did it was the generic version called "tegretol". My skin was so bad that I had to have a skin graft. Last year, the week it started one day I took a motrin and the whole week I ate a lot of seafood. My doctor didn't know for sure what was the cause but he said just stay away from motrin and seafood. I had to have my eyes worked on too. I'm not sure what you call it but it's when it starts to connect on the side of your eye. I hope you understand what I'm talking about. But nothing serious happened to my eyes. My doctor treated me with IVIG. Besides all the prayers that was what kept me alive. Both times everything pretty much cleared. I only have a few scars on my skin. Not bad at all. So I'm thankful. But a few months ago I was diagnosed with lupus. I just got home a couple weeks ago from the hospital. I have lupus cerebritis. I was in the hospital for about 2 months. I'm slowly doing better. Please pray for me. I'll be sure to pray for all the people affected by this horrible sickness. Thank you for letting me share my story.

Name:: barbara

Story:: Our story is just starting. Heather is my daughter in law of just two months. her and my son Mitch had a beautiful wedding on 7-12-2003and on 8-30-2003 she became sick and staring to get a rash. two trips to the E.R. before they admitted her and then at least five different Dr.s all with different ideas but no real answers. she was in agony untill tuesday afternoon when by chance a skin cancer Dr. was on the floor the nurse pulled him over and with one look knew. two hours later she was flown to Nashville. this is our fourth day here and she is still not out of the woods , its one day at a time. Why do most Dr.s not know of this . they havent decided what caused the reaction. Shes just 19 , how do they cope with this . This place is great and they have done wonders but we keep thinking that there should be something more. is There? Pray for our family

Name:: Darcy

Story:: I grew up in a small farm community in Northeastern Colorado. In 1984 I became very ill. I had a high fever and I looked like someone dropped me in boiling water. I was almost four years old. My parents took me to the doctor immediately. They had to take me in the back door because at that time no one knew if it was infectious or not. I was admitted to the hospital immediately and my doctor began making phone calls to the University hospital in Denver. Social services was called to investigate my parents for abuse and three days later I was finally diagnosed and placed on large doses of steroids. My doctor said that the blisters and lesions were internal and external. I was released from the hospital four days later. I had blisters and scabs and swelling for about a month following my release. In my case I was not taking any medication and hadn't been exposed to any new chemicals that anyone was aware of. I did live on a farm and ranch so there were always chemicals around. Not knowing what caused my reaction makes me worry that I may be exposed again. I have no physical scars and I still have vision. I am the only member of my family that needs glasses. They all have 20/20 vision and my vision is 20/400. I am so happy that awareness is growing and people are being treated more quickly and more accurately.

Name:: Lacey G.

Story:: Reading the accounts of those of you who have suffered or whose loved ones have suffered from Stevens Johnson Syndrome, I can't help but feel incredibly lucky. I had SJS in August of 2002 and made a complete recovery. I was diagnosed with bipolar disorder in July, and my psychiatrist prescribed Lamictal, which is also used to treat epilepsy. I am very thankful that he was cautious enough to warn me about the possibility of SJS, even though at the time I largely dismissed it. It was about a week later that I felt my lymph nodes swell. Two days later I awoke to find my lips hugely swollen. By the end of the day, I had also developed a rash, mainly on my hands, and sores inside my mouth. I called my psychiatrist and he immediately discontinued the Lamictal. I then went to my pediatrician (even though I was 19 at the time), and was told by the nurse practitioner that I had hand, foot, and mouth disease. Over the next two days I began to run a fever, my tongue swelled so much that I was unable to close my mouth, the sores in my mouth spread down my esophagus so that I was unable even to swallow my own saliva, and my gums bled constantly. I went back to my doctor, convinced that this was not normal, and was given the same diagnosis. At my mother's insistence, we were sent to a dermatologist, who immediately gave me a steroid shot and did a skin biopsy in the hopes of confirming her tentative diagnosis of SJS. That night I was so miserable that I went to the emergency room. The admitting physician told me that there was no chance that I was suffering from SJS, and all the doctors would continue to insist on this until the biopsy confirmed that I had SJS. Because I was dehydrated, however, I was admitted and put on intraveneous fluids. While I was in the hospital, I was given morphine and steroids daily. I am incredibly lucky that my mouth was almost exclusively attacked by the disease. My lips did have the blistering and black scabs, and it was about a week before I could eat anything other than soup or ice cream without my gums and tongue bleeding. However, I had no ocular involvement, and the rash did not progress to the blisters that can accompany SJS. Miserable as this was, though, I cannot say enough times how very very fortunate I am. My condition was diagnosed relatively quickly and was able to be contained, and for that I am grateful. When I was sick, many people told my parents and me not to look up SJS on the web because of the frightening images that are on this and other sites, and I never did until tonight. I wish that I had so that I could have appreciated just how lucky I was. Even though I was in pain, it could have been so much worse, and I would have been encouraged by that. I am astounded by those of you who have gone through more severe cases of SJS. I admire your courage so much, especially those of you who are experiencing this as children and who will feel its effects for the rest of your life. I will keep all of you in my thoughts.

Name:: Becky Fung

Story:: I think your website and especially your idea of publishing stories of individuals' experiences on the web is a wonderful idea.
I recently was diagnosed with Stevens Johnson Syndrome. I came out in a rash, but did not know what it was, and did not notify anyone about it for five days after the very severe rash broke out because I did not realise how serious the syndrome was. I only wish I had known more about it so I could have taken action earlier. When I was in hospital, a friend of mine who is working in medicine, as well as the secretary of my neurologist, tried to access information on Stevens Johnson Syndrome for me. Most of the information was scattered, very technical, and full of medical terms that were hard to follow. I was told that it was almost impossible to find anything else, and that practically nothing was written from a 'patient's perspective' in simple terms. Which was why I was very grateful to stumble across your site and find some easier to follow information, with stories that were from people who had actually gone through the experience and weren't just treating the syndrome as a table of statistics and list of medicines. I'd be very interested in hearing about anything further that the SJS Foundation decides to do.

Name:: Colin Nunn

Story:: After reading Julie's story I feel like such a flake, but here's my story anyway to join the masses. I contracted SJS in February of '99. My then wife wasn't overly bothered and left me in bed thrashing deliriously with a fever. Eventually she called out a Doctor who diagnosed Pneumonia and gave me a shot of penicillin and ordered an ambulance. I lay in a hospital bed knowing deep inside that my wife was going to be unfaithful and wanted desperately to return home, so I signed myself out against medical advice, they still didn't know what it was. I returned home and arguments ensued, she was really angry about me returning home, I wondered what I'd spoiled. That night I became much worse and decided to go back to hospital. Once in hospital I crashed into sleep. I woke up in the middle of the night not fully realizing that my lips had swollen and scratched the bottom lip with my teeth, it burst, at this point I became fully awake. I called for a nurse. When one arrived I was cupping my lips which had swollen to four times their normal size. I removed my hand for her to expose burst and bleeding lips of which the skin was decaying. It was then they rushed me to the cancer ward thinking I had cancer. The soft membrane throughout my body almost completely decayed. Nose, mouth, rectum, genitalia and I had the distinctive targets all over. They took tests and were sure I had pneumonia and cancer. My family were there regular, my then wife made occasional small visits where she could fit them in her busy 'schedule.' I sat up and took notice when my brother turned up. We hadn't talked for a while, a silly bust up. When I saw his face full of real concern I knew then something serious was up, I didn't know at the time that they had diagnosed cancer. I started listening intently to what Doctors were saying and started asking questions. On the fourth day I heard them whisper that they could rule out cancer, my second shock. Apparently the medications they could give me would either improve the pneumonia and worsen the SJS or vice-versa, so they put me on morphine, glucose and oxygen and hoped for the best. The oxygen was starting to dry out my eyes but fortunately I didn't get dry eye syndrome. On the fifth day someone came up with SJS and the ball started rolling. I was informed that the truth was no one knew about SJS, I had just been lucky that one of the specialists had recently read about it. They started making calls and I was given steroids. Eventually the skin that had sloughed off my lips, gums and cheeks started to grow back as it did everywhere else and my strength began to return. After two weeks I was discarded and made a few out patient returns more for their study than anything else. I've had some minor bouts since but generally notice it coming on and get the steroids rapidly and it is prevented from getting worse. I'm writing now basically because I've just got back in touch with the foundation after a long sabbatical in order to ask if an after effect of SJS is chronic fatigue syndrome and was thankfully told yes. I say thankfully because I was going mad wondering what it was and trying to find something to say to people "See, I'm not faking it." My heart goes out to all who are suffering or have suffered from SJS and related syndromes, particularly children, it just shouldn't happen to kids. The after effects I am left with are very delicate soft tissue in my mouth and rectum and irritable eyes as well as the chronic fatigue which is a major pain in the rear, but I still feel very fortunate. There are many that have suffered and are suffering far worse than I. Strength, courage and love to them.

Name:: Tiffany

Story:: I was being treated for a sore throat and laryngitis with erythromycin since I could not afford the ones I usually take for illness. When that didnt help, and after having a sore throat for 3 weeks, I was put on Amoxicillin. I'd never had a reaction to penicillin before, and was also currently taking the sulfa drug Celebrex for a shoulder injury. I'd been on that about 3 months. I was having heavy times of stress in life and after day 8 out of 10 on the Amoxicillin, I noticed little pinpoint dots on the insides of my forearms and my back was itching a lot. By that night I was in shock and in the ER. The next morning my entire body was covered in an itchy rash and I had sores inside my mouth throat and other mucosal areas. The doctors were perplexed, and soon I spiked a high fever and developed a cough. I was admitted into the hospital and put on heavy doses of medications, several different types. Eventually my rash was one giant splotch that started to blister and open up. It took about 3 weeks to get released from the hospital and luckily I have very little scarring, but now Im so full of questions as to which drug actually caused it. I feel thankful to be as lucky as I am as I've read stories much worse than mine. My heart goes out to all of you.

Name:: Darren Maine

Story:: I should have died but I didn't....and short of shoulder pain due to arthritis at the very young age of 24 I had health and life to look forward to. A 10 day course of an NSAID by the name of Clinoril introduced me to the world of TEN...Toxic Epidermal Necrolysis in which a Stevens Johnson Syndrome put me on the list of infamy of surviving what was related to 100% skin loss to the level of second degree burns, double bronchiopneumonia which shutdown my lungs 3 times in one night, and a staphylococcus infection that should have put down an ox....My dermatologist told me I should have died....no better than a 30% survival chance with only the severity of the reaction let alone the addition of the pneumonia and staph...but I made it after 2 months in hospital...one month of that in critical care of a burn unit at Calgary Foothills Hospital and their ICU for about a week of that....
I still live with lots....I've had Lester-Jones tube implants to correct loss of my tear ducts due to scarring, ingrown eyelashes and chronic eye infections and lost vision function courtesy of the reaction...chronic pain due to the fact that short of opiates doctors won't touch the arthritis with a 10 foot pole...no finger or toenails either but I've gotten used to that...and the memory of what is what like waiting for the debriding to be done and more morphine....and lots of fear that it just might happen again but this time I will know what I have to look forward to....
Kind of a very dark story...but there is some light in this. I haven't stopped....I have lived to see 42 now and so much in my life has changed. Some of it maybe even because of the fact I experienced it. And I guess it's time that since this all happened back in 1986...or was it the summer of 1985 that disappeared...I don't remember for sure now but if anyone out there is seeing their summer, fall, or winter for that matter disappear write and let me know...because though I should have died I didn't and maybe this is one of the reasons I didn't....to help those of us out there who are dealing with the scare of it happening...or the scars of it already being there....No matter what...don't give up....once you give up the odds are not going to improve and I still believe there is lots to live for...maybe even more....
For anyone in Western Canada there are good facilities and doctors there....I know them...they will remember me well...and this door is open 24/7 to anyone who wants to stop by and say hi and look for some hope when it looks like it just might be running out....

Name:: Jussara Lazo Ortega

Story:: Hi, I only speak a little english, i am from Peru. I am 22 years old, last year i had SJS in june and i was very lucky. The story started when i suffered a depress in a difficult time in my life, i went to the one of the best psychiatrist here in Peru who gived me Lamictal, all this days i was very bad emotionally. I was taking it by ten days, one friday i had a skin rash and went to the clinic thinking about an intoxication by food, the doctors thought the same, give me some pastles and recommended me left lamictal. All this passed in a weekend. After that, on sunday i began to see cloudy and I thought i was having a sore eyes, all this night i couldnt sleep by the annoyances. On monday i woke up very bad my mouth was full of ulcers, I had blisters all over including the inside of my mouth and throat. I couldn't eat, I couldn't drink, it was terrible i dont have words to describe how it feels. Then, i go to my university's doctor , he didnt have idea about my illness. We talk with the dermatologist who diagnosed me SJS and suggest that i should be confined immediately. My body felt weak, i never listened about it.I was hospitalized for 14 days i dont have words to describe how it feels. I was sedated with injections during this time. I had it in the mouth, vagina and to the hands, arms, eyes, legs, back, face, fingersnails and feet. I saw all my body change, everything was as a dream. My family was all the time with me, they say my recuperation was a miracle. Even after the hospital, I had to have a home health care nurse come and help me for 2 weeks. I am thank for my doctors they save my life. Now, i am good, all my body is normal but my eyes have the dry eye syndrome by SJS, i have to use artificial tears. Thanks for reading me!!!

Name:: Jan McElroy

Story:: I am a 67 yr old female who has SJS after taking the nsaid Bextra. I was given Bextra for rheumatoid/osteoarthritis on May 10, 2002 as samples from a doctors office. I became ill May 17, 2002 with high fever, chills and rash. I have had a lifelong allergy to sulfa and it is well documented on all my medical records. I was in good health until taking the Bextra. My skin began to rash, blister and peel , repirations short and b/p dropping fast. I was rushed to the medical center on May 19th in anaphylaxis and multiple organ failure. Burns were approximately 70% of my body. I was trached and had heart arrythmia, multiple staphs and pneumonias. The medical care I received was the best possible in Birminghan, Alabama and I had a team of 14 specialists who cared for me for 3 months, two of which I spent in SICU. I went to hospital rehab after that time and have since spent the past year in physical therapy as an outpatient. I am so glad to have found this organization and know that there are advocates out there for those of us who were stricken so suddenly and severely. The longlasting effects have been slight loss of hearing, some impaired eyesight, slurring speech because of the oral burns, balance impaired and strength and endurance very much affected. I just recently underwent scar revision surgery to release the constrictures in the corners of my mouth. If you have an e-mail newsletter, please include me on your list Thank you.

Name:: Alexander Calderon

Story:: Alexander was coming out of a throat infection, taking DURICEF for five days. His condition did not improve, persisten cough and some fever. After three days from finishing the DURICEF treatment without improvement, Alex went to the pediatrician, who thought it was some king of chest infection, and prescribed BIAXIN. At this point, no one ever told us that Alex was alergic. He was getting sick every Spring and Fall, we had no clue, and the physician never suggested a test to find out why. So, after the pediatrician prescribed the BIAXIN, Alex was having fever and coughin a lot. In the afternoon of May 16, 2001, Alex took one teaspoonful of the medication. By 6:00 pm , he started to develop small red spots around the neck and face? By 11:00 pm, the spots were no longer spots but rush like marks, and the right eye began to drop. The doctors at the emergency room in the Long Islan Jewish Hospital, did not tell us what was happening, the resident thought it was alergy and eye infection? Released hin around 3:00 am with alergy sintomes. At 9:00 of the next day, May 17, we took Alex back to the pediatrician, and she said that he was having Sten Johnsons Syndrom? We did not understand what was going on and she asked us to go back to the hospital and mention his condition. Alex was admited immediatelly. The red marks in the face and chest, were no longer red marks but big blisters. Alex was taken to the ICU at LIJ Hospital and kept there for three days. The doctors told us that they could not continue his treatment; he needed a more specialized attention and treatment. We were able to take pictures of his condition, unbelievable to any ones eyes. His eyes closed and and fevers of up to 107 for two nights. Alex was transfered to Cornell Medical Center-Burn Center 8West on Saturday, May 19, noon. We were still ignorant of what was happening to our son, Alex. He was admited to the ICU at Cornell with a 40% probability of making it out alive. It was never conceibed in our minds, until the resident came and ask us to intubate him other wise he could die that night? This was our awakening, we than understood what was happening and broke down. Alex was sedated for three weeks and the other three weeks were on partial sedation while healing. Our little baby was unrcognizable. My wife and I did not move from his side for three weeks. I came home to pick up a change of cloth for both of us. Alex sister could not go to school for a week. Alex lost 67% of hsi body skin, upper chest and face skin is fearly new. Today, October 8, 2003, is being two years and four months since the incident. Alex can see from one eye only, left eye. The rught eye was damaged and has no vision. The medication to heal his scaring around the cornea as formed a cataract on the left eye. Now he can hardly see from that eye, he is at time frustrated. We have, so far tried to be strong and make him feel good when breaking up dispear. A month ago God gave us hope. This tuesday we wwent to see Dr. Edward Holland at the Cincinnati Eye Institute. He gave us and Alex hope with his new cornea steam implant procedure. God permits it, Our Alex will soon be able to see with both eyes again. Dr. Holland wants him to grow and get a little stronger, since hsi is only 9 years old, so that he can resist the treatment and the medication needed for the implant. To us and Alex is a sign that God has not abandoned him. There is light at the end of the tunnel. Ever since Alexander's incident, every doctor is very careful when prescribing medication to him, so is the pharmacist. Sometimes we fell as if we just woke up from a bad dream, but we soon remenber that it was not. Life does not play fair!

Name:: Joan

Story:: Our 6 year old daughter has just survived a bout with SJS. The cause is debated by her doctors. She was infected at school with 2 common childhood viruses simultaneously. One of those viruses, chickenpox, she had received innoculation against. Her doctors believe that she had an allergic reaction to one or both of those viruses. They treated her very conservatively due to the fear that normal SJS treatment would cause one of the other viruses to take control and do further damage. After 2 weeks in the hospital she was released yesterday. We are worried about her eyes still and are taking her for a second opinion with another opthalmalogist tomorrow. At the very beginning of the outbreak our daughter did receive some Motrin. We do not know if this had anything to do with the outbreak. Her doctors do not think so. Anyone who can give us help with treating her eyes which are still barely able to open and with her skin - we fear she may have scars on her face - we would be grateful for any helpful information you can send our way.

Name:: Rebecca Fung

Story:: I had an appointment for a check-up with my neurologist on Thursday. It was the Friday before that I increased my dosage of the anti-epileptic medication, Lamictal, and broke out in a severe red rash all over my body. At first, I did not connect the rash to the medication. I was in pure agony, and knew I looked horrendous, but I didn't think it had anything to do with my medicine. I was so itchy that I couldn't go to sleep till 3am in the morning, and then I'd wake up at 6am, scratching myself. I was relieved over the weekend when the itchiness alleviated a little, although the blotchy red rash remained. However the itch was replaced by aching soreness, fever, stomachache and headache. I spent my days in bed groaning, refusing to eat. I also refursed to call a doctor, thinking to myself that I would see my neurologist on Thursday. On Wednesday my sister really panicked and rang my neurologist. He recommended seeing a GP, who immediately diagnosed Stevens Johnson Syndrome. "This is not to be fooled with. Go to the Emergency section of a hospital immediately," he said. I was scared and confused. What was wrong? I had expected just to be given some cream for my sore skin. In hospital I was sedated, but I remember waking up to find the heads of opthamology, dermatology, gynaecology, immunology, and my neurologist all staring down at me, looking very worried. I remember being told that Stevens Johnson Syndrome was rare and potentially fatal, but at the time I was too groggy and confused for any of this to make a very alarming impact. Slowly, though, things became more scary and made more of an impact. I remember the alarm I felt when it was recounted to me how I was rushed off to Neurology because of the fear I might be brain damaged or have blood clots in my brain. I remember the cold numbness I felt when my gynaecologist told me he'd like to test me for AIDS and hepatitis. I didn't feel so much scares as helpless and weak - there was nothing I could do. Probably the worst fright was with my opthamologist. I was being intravenously fed, with a plastic cord down my throat, so I could only communicate by pen and paper. My opthamologist was scraping out a thick yellow mucous from my eyes with a spatula. He was saying "It's important to scrape the mucous out of Rebecca's eyes, otherwise there's a very great chance that the eyelids will stick to the eyeballs." I panicked then, grabbed pen and paper, and scribbled a message: WILL I GO BLIND? and passed it to my opthamologist. He read the message, looked at me very gravely, then went back to my eyes. He refused to answer. For me, that was true fear. I spent almost 3 weeks in hospital, recovering from Stevens Johnson Syndrome, and to some extent, am still getting over it yet. While I was in there, I tried to get friends to get information for me about Stevens Johnson Syndrome, and I was very surprised by the lack of information. Even though they had access to medical files, they could find practically nothing. And most of what they could find was written in highly technical language, peppered with statistics and pharmaceutical names of medicines. "I couldn't find anything from a patient's point of view," said my neurologist's receptionist sadly. "Maybe you could write one. Maybe, I thought at the time. But where would I put it? Well, now I know.

Name:: Lisa Diaz

Story:: Sept 2003 Hi, I'm a 30 year old woman who had SJS in 1984 when I was 11. I developed a cold and the next day I woke up and the whites of my eyes were red, I also had red spots all over. I wanted to go to school but felt really lousy. I had a fever and my older sister stood home to watch me and give me tylenol.That night i tried to eat soup and couldn't taste it. I went to bed and woke up in a fog. My mom was trying to dress me.She had noticed that the spots on my face were turning into little blisters. We got to the hospital and by the looks on people's faces I knew that I was pretty sick. I was moved into intensive care around the 3rd or 4th day. The doctors couldn't figure what was wrong with me. I remember being in and out of it and having all these people come in and look at me. My parents were told I could go either way. I just felt exhausted and didn't want to be touched. By this time blisters were hanging off me.My dad told me a swedish Dr came in to look at me and knew what it was.After that I was transferred to a burn unit. They put me to sleep to take off all the dead stuff and wrap me as if I were burned. I was on heavy meds and the pain was horrible I also couldn't get warm and they had a huge heater over my bed. I hadn't seen myself the whole time and when I had recovered enough to ask for a mirror I was shocked and saddened by my own looks. My face was beet red and my lips were white and half peeled off.My skin was better but still had the appearance of a bad sunburn. I went home after a month and was put on steroids that helped. I personally have never met another person whom has had this. I still suffer the long term effects with my eyes.I use artificial tears all day and am on pred forte ( a steroid drop) also in May of this year I went to visit Dr Pflugfelder in Houston and was put on the plasma drops ( they make these with your own plasma ) They are making a difference in the way I see and also make me more comfortable. I am so thankful for this website and for the sharing of information. I went damn near 18 years with the same thing of going to the Dr and being told there was nothing they could do.There isn't alot of interest in this condition,but having this does change your life. To those who have had this keep looking and don't give up always have hope. Peace

Name:: Linda L. Emerald

Story:: I contracted SJS in October of l996 after taking about 10 days of dilantin. I then spend about 7 days going back and forth to my regular Dr. and the local hospital. it took them that long to figure out what it was. Once it was diagnosed, I was life-flighted to the University of Calfiornia in Sacramento. I was in a drug induced comma for the next 6 and 1/2 weeks. When I finally came out of the comma, they told me that i would be totally blind for the rest of my life. I have, however regained a minimal amount of vision in the left eye. The right eye is almost tatally visionless now after 3 cryoplexies, 2 eyelid reconstructions, and a stemcell transplant that failed after 4 and 1/2 month. The tissue is now turning to skin tissue so the vision I had is nearly gone. I don't rmember verymuch of what actually happened at the time. I only know what both my friends and family have told me..and that is quite frightful. I try to stay as independent as possible now.. but am living with a family, and paying rent. I see my children and granchildren once in awhile. but hear from the often by either telephone, or e-mail.

Name:: Angela

Story:: Story: Anthony and I (Angela/Mom) decided to write down this experience that he had with Stevens-Johnson syndrome. This is taken from daily notes I kept in the hospital. We thought it was worth documenting from my point of view, and from his. Here is mine: Nov 3/98 Anthony had been sick and home from school for one full week. He started with a fever and sore throat so I kept him home. After a few days when he wasn’t better we went to the clinic. He didn’t get a very thorough checkup, and was told that he had a throat virus, and to go home and take children’s Advil every 6 hours. We did that. His throat got worse until he couldn’t talk or eat. Still high fevers when the Advil wore off. 2 days later, he went to Chilliwack General Hospital Emergency room since the doctors had 2 days off, there was no where else open. There he got a more thorough checkup. Still was told it was a viral infection of his throat, and just incase it was strep throat they took a throat swab, and said they would call on Sat if he needed antibiotics. He didn’t call on Saturday. So we continued on, Anthony still was not talking, and taking Advil. On Sunday he did perk up, and we thought he might make it to school on Monday. We even packed his lunch, and got his stuff ready. On Monday morning he woke up with puffy eyes, face and especially lips. We called our regular doctor, he said after examining him that is was strep throat and Scarlet Fever. We went home with antibiotics (Amoxacillin). During the evening he got worse. He said it was hard to see through his eyes. They are very mucousy, red around them and glassy. We were cleaning them out and putting cold cloths on them. Then we realized he had clear gel coming out of his lips. I tried to wipe off one of the gel bubbles and his lip split wide open. We called our doctor (now in), and he took us in within a ½ hour (his lunch break). He suggested this might be Kawasaki Disease. There was no certain test for this, that it was serious, and that he would have to go in the hospital if that was what it was. We were alarmed and somewhat in shock. We went to the lab and he did a blood and urine test. By now his lips were very swollen and mucky, they were bloody, and his eyes were swollen. After the lab we went to see a pediatric specialist. He said he also thought it was Kawasaki and off we went to Chilliwack Gen. Hospital. When we got there they were ready for us. He went to his room and settled in. We found out more about this disease through the Internet and doctors. Kawasaki disease is caused from a virus, rare, and not a lot is known about exactly how it is caused. The treatment was an Immune Globulin drip that takes 20 hours to give. There is a risk that the body will reject it. He was checked very carefully every 15-min at first then every ½ hour, and then every hour all night until 6:00pm the next day. They said there could be a complication of damage to the heart; there is nothing to do but wait and give IV to keep his fluids up. He was very quiet. They said he was very toxic when he came in, and that his body was in a state of shock. His eyes were swollen and infected looking, stuck together often. The mouth, tongue, lips, throat and esophagus all had to shed the skin until they were completely raw, and then they had to regenerate new skin. This regeneration takes 5 to 6 days from when it finished shedding. At this point they were still shedding. It was as if someone took clear gel and poured it in his mouth. The next thing expected was a rash and shedding of the skin on his feet and hands. During this time he was very listless and didn’t talk much. He was on Tylenol every 4 hours until they though it was Kawasaki, and then he had to switch to Aspirin to protect his heart. The nurses were great. One in particular that cleaned out his mouth very thoroughly, and got all the mucous out. His lips were swollen, and very blistery, bleeding etc… a real mess. The rash we were expecting showed up as spots, like chicken pocks. Now they didn’t know for sure what was wrong with him, they were expecting a different kind of rash. A new pediatric specialist came and looked at him the next day. This was the 5th doctor to see him. He said it was Stevens-Johnson syndrome. We had a rough night ahead of us. It started with him having itchy, hot feet. They were all blistery. He had to do mouth rinses with baking soda, which upset, and hurt him, he had a fever, his esophagus and all the way up his whole mouth tissue was stripped, and trying to heal. The lips and mouth were too sore to suck through a straw or use a spoon any more, so he became dehydrated, and very sore and miserable, he was fed up. The nurse said hit his saturation level; he couldn’t handle all that had happened to him any more. He had been so good; we don’t know how he managed. All these things magnified, and he became what the nurses charted as ‘hysterical’. He cried, and screamed, and kicked. He completely lost control. Blood started to spurt out of his nose and mouth. We did all we could; gave Tylenol, plus Benadryl through the IV, icepacks, and cold cloths on his feet, and lots of T.L.C. came Anthony; although not sleeping soundly was exhausted and resting calmly. I was on the edge waiting for another bout. One thing that helped was that they let me stay (and expect it if at all possible), so I slept in a chair/bed beside him the whole time we were there. We were alone in the room with full control over movies (150 here that we went through), Nintendo64, and hand held games. Anthony was the only child here, the rest were older people. An eye specialist came to see him the next day. This was now our 6th doctor. His eyes checked out fine and healthy on the inside, and no sign of permanent scarring. The spots had doubled but were still considered to be an ‘ok’ number. They were filling up, popping, and healing. We were all there doing all we could, but he still needed Morphine to calm down. It was hard for us all to watch, and we felt so helpless. He didn’t want to fall asleep, and wake up with everyone gone. They stayed until he awoke, and said goodbye. What good friends we have. The rest of the night went great, neither of us could sleep, we were still awake at midnight. He had a flashlight and was checking and counting all his spots. We talked and had a really nice time. We both felt so warmhearted about all the people we had around us during this whole experience, and how lucky we were. We had a good sleep. This weekend was when he took the turn he needed to take towards getting better. It was nice when they knew what he had, and could give him the treatments, and morphine etc, to keep him comfortable. He was given very little at first because they didn’t want to mask any new symptoms until they were sure. Now he can be as numb as he wants until his body heals enough that he is comfortable. He started getting full mouthwashes and rinses now, and teeth were cleaned with a sponge on a stick, also eye cream and lip cream. He started taking Boost and milkshakes through a medicine syringe, since he couldn’t suck through a straw. He took the treatments better and better. We had to be very careful to not touch his lips; they were very scabbed, and black with blood and bled and crack very easily. They monitored when the IV could come out, and lowered his input level in preparation. A few days ago his tongue was white and swollen. Now it is better, and his cheeks inside are cleaner and getting nice fresh skin. Eating wasn’t so bad if he could just get the food past his sore mouth. His eyes were no longer sticking together and were less red and puffy. His energy was up too. We felt much better. His younger brother Jeremy was missing the family unit, but is being looked after by lots of people. The hospital was great. They were in contact with people from Children’s Hospital and were considering taking him there if he didn’t start to eat, and put in a feeding tube. He did start to eat better though; he even had ¼ of a serving of Jell-O on Sunday night. It was now Monday November 9th. We continued on in the hospital, waiting for things to heal, and watching him closely. The fevers were gone. The bathroom trips were hard to take, he would scream. His feet were blisters at one point, and I had to carry him under the arms to the washroom. There weren’t many places I could hold him, or give him a hug. He had to drink a liter and a half a day in order to go home. He wasn’t close. It hurt to drink, so we just needed more time. The doctors said to take all the time we needed, you have to be comfortable that you can deal with all this at home. He needed morphine every night since they first gave it to him, except one. On Friday November 13th, he was able to go home after 11 days in the hospital.

We are forever in debt to the doctors, and nurses who got out all the textbooks, got together, and laid it out on the table, to try and figure this out. They didn’t take any chances, and didn’t make us feel uncomfortable about his level of care for one second. It is absolutely heartwarming to know that we have so many people around us who we can really count on and trust. These people (family and friends) really pulled together for us. It was amazing to see. We had picnics in the hospital room, food made for us, the house taken care of, Jeremy taken under wing, phone calls, visits, gifts, so many times when we felt lucky. Even Anthony, who was too tired to speak to visitors, late at night when he and I talked, would say, “That was so sweet of them to come by”. When a friend felt bad because she couldn’t come, he was worried about her, and wanted to know if she was ok. He may not have been able to express it when you all were there, but he was very happy to see you all, and loves you all too. Angela (Mom)

Hit it Anthony; anything you want to say… I have Stevens-Johnson syndrome. It is very rare. They are not sure how it is caused. I was in the hospital for 11 days (Chilliwack General). The doctors treated me really good. I had 6 doctors. One was from Children’s hospital, the only one like that in B.C. The nurses were great. I remember some of the nurses, like Rosemarie, Sue, and Betty. I felt horrible. My skin in my mouth swelled up. Down past my throat was hurting. I had spots, especially on my hands and my feet. My eyes were swollen and red. I was really tired. I was in a lot of pain. My lips were black with blood and swollen too. I had to have an I.V. to give me fluids. I had drinks through a medicine syringe. I also had noodle soup through a syringe. While I was there my Mom stayed with me the whole time. I got to have a T.V, and Nintendo and 150 movies. My friends came to see me. It was a scary moment for me and my family. My tongue feels like it is getting worse today. I don’t like having this disease. Who would? I’m not going to forget this time of my life. It was not the best time of my life, but it was ok. Well I got to go. Bye Bye for now. Anthony Ray
October14/03 Anthony was 8 years old when we wrote this letter. He is now 13, almost 14 years old. I found the notes I wrote all this on, sitting on a table this morning. He had been reading through them. It musters up a lot of memories. He has been healthy since with only a couple of sore throats, and fevers, that went away with some days of down time, so he could fight it naturally. He hasn’t had to be on medication yet. When he gets a headache occasionally he takes Tylenol, but not Advil. He has only a couple scars from the blisters on his body, and has some leftover scarring on his bottom lip, just discoloration though. So he was very lucky. His eyesight is better than 20/20. One of his memories that always comes up, is of him playing Nintendo with blisters on his hands, and how they popped, and left the controller wet, and he would have to wipe it off so he could continue to play (his brother likes that one too).
I found your letters interesting, and thought I would share mine as well. I had to do a lot of cutting to get it down in size. I left out a lot of the mushier stuff, but you get the idea. Good luck out there!
Sincerely, Angela Ray

Name:: Scott

Story:: When I was in the second grade, I contracted the flu. I was prescribed erithromycin for the flu. Shortly after I developed painful sores on the roof of my mouth, which spread to my lips and later to my entire body. The sores began to crack open and bleed, and I was in serious pain from this. I was in the hospital for three weeks this first time. The doctors could not figure out what was wrong, but eventually traced it back to the drug I was prescribed for the flu. They concluded it was Stevens Johnson Syndrome and I was having an allergic reaction to EITHER the flu or the drug or both. This conclusion did not come until I had contacted this the next three years of my life. Finally I was instructed not to take erithromycin, and to take a flu shot each September or October for the rest of my life. I had wonderful doctors throughout this whole processs and am thankful for their efforts. My family and I had no idea what this was and it was scary to know the doctors could not figure it out. I now take the flu shot every year, and have had no signs of it since.

Name:: Bob and/or Tina Owens

Story:: Two years ago my doctor prescribed Zocor to treat my cholesterol. I was just about to go on an trip to Africa and asked if I could wait until I returned in a month's time. Although the doctor implied he'd be happier if I started the drug right away, but said I could wait if I wanted. After I returned from Africa and had finished all my various medications for that (malaria, etc.), I decided to start the Zocor. I started on a Monday. By Wednesday, I had a severe outbreak of what I thought was acne, coupled with blisters around my lips and inside my lips. On Wednesday night, when I was brushing my teeth, the entire surface of my tongue sloughed off in one piece. By now I was very concerned. I couldn't understand what this was. Nobody had really told me that Zocor could produce such reactions, and I had just returned from Africa, so I was considerably mystified. I went on the Internet and looked up Zocor. I looked down the list of possible drug reactions, and way down at the very bottom it listed "sloughing and blistering of mucuous membrances." On Thursday I made an appointment with my doctor, and he was smart enough to not ony realize my condition was caused by a drug reaction, he also mentioned Stevens Johnson Syndrome, although he didn't make a big deal about it. He took me off the Zocor immediately, and had me do a blood test. He said I had some changes in my kidney function but they seemed to be minor. He asked me to do another blood test in a week.
Immediately the lesions began to clear up, but the skin was very tender for quite a long time. The next blood test came back normal. It seems, after reading your website, that I was extremely lucky, not only to have such mild symptoms, but also to have a doctor who knew what he was doing. That's my story. I don't know if this helps you at all, but it might help to add Zocor to the list.

Name:: Vera Chichester

Story:: My story is pretty much the same as all I have read. I have determined that I am the senior female of this group. On Thursday, September 24, 2001, at the age of 69, I had "minor" out-patient breast surgery. The following day I developed a fever and called the surgeon. He was not concerned but within the next couple of days the fever went higher so he prescribed cortisone for me. I spent 20 of 30 days in various hospitals. Within the next couple of weeks the situation worsened and because nothing he prescribed helped, I was sent to the infectious disease doctors who prescribed a 42-day regimen of Vancomycin (daily IV at our local hospital) and Rifampin (tablet). Periodically, I would itch and was given Benedryl which would help a little. Eventually the Benedryl didn't help so Atarax was prescibed. On the 20th day of the Vancomycin IV, I developed hives and went to the ER where I was given a Med Pack and sent home. The following evening I was so red with hives and the itch was so bad I was hysterical so my husband took me to the ER at the hospital where I had the initial surgery. His thinking was that they would admit me to the hospital but they only gave me medication to knock me out so I wouldn't know that I itched and sent me home. The next morning some blisters had developed. The next day I had appointments with both the surgeon and the infectious disease doctor who decided that I should be admitted to the burn unit of a Kalamazoo hospital where I spent the next ten days. One blister on my left leg at the ankle was the size of a tennis ball. There were others that were the size of a 50 cent piece and, of course, my entire body was blistered. They said I had second degree burns. I had blisters in my mouth, ears and nose. (The highlight of my hospital stay came when one of the infectious disease doctors became angry with me because of a question that I asked and made the statement that he didn't know why I was there that "this hospital is for sick people!") I really thought I WAS sick. For some reason, I was served yogurt at every meal. There must be something in that that is helpful. (I became so sick of yogurt that I would secretly flush it down the stool.) After ten days in the burn unit I came home to further recouperate which took another six weeks or so. During that time all my skin peeled and I lost all my hair except the hair on my head. Six months later I began to lose the hair on my head, too, although not all of it. I still have periods when I lose a lot of the hair on my head but it seems to come back most of the time. My skin is blotched and I develope little white spots that eventually go away. When I was told in the hospital that I had a "mild" case of Stevens-Johnson Syndrome I didn't know what they were talking about because I had never heard of it. When I returned home from the hospital I decided to see if there was anything on the computer about it and was appalled at what I discovered! If they had not stopped I could have died! (At one time, my husband thought I was going to.) I decided that I was a very lucky lady. My husband has contacted several attorneys but the conclusion was reached that my case wasn't severe enough for a law suit. One attorney said they don't sue the doctor but do sue the drug company for not having adequate warnings about a possible drug reaction. But this is only in extreme cases. I definitely feel that the medical profession is not aware enough of Stevens-Johnson. Everytime I get a chance to tell my story to a medical person, I do. I wish there was a way we could tell our stories. I wrote to Oprah once in the hope that someone there might take an interest in our plight but did not hear anything from them. We need a way to educate the public about this terrible disease. Tomorrow, October 31, is my seventy first birthday. Ain't I lucky? My regards and prayers to all who have experienced this terrible disease. Vera

Name:: Thomas R. Violante

Story:: Our daughter, Carissa, age 16 1/2, was diagnosed with SJS on Friday, October 24, after her dermatologist at Yale University Health Services received the lab results of her skin biopsy. She came down with the initial symptoms 4 weeks ago after undergoing a root canal and was told to take ibuprofen every 4-6 hours for pain. She developed what appeared to be conjunctivitis on her eyelids, had a low-grade temp and exhibited targeted mouth and tongue sores, which doctors thought were either herpes simplex or stress-related cold sores.
The tooth pain subsided and Carissa's symptoms dissipated, but she came home from a concert with a headache and began taking ibuprofen once again, this time over a few days. On October 13, she came home from school exhausted and flopped onto her bed at 3:30 p.m., slept through til the next morning, and repeated that until Wednesday, when we noticed she once again developed conjunctivitis on her eyelids and a large targeted sore on her tongue. This behavior was inconsistent with her routine. She was always a very lively kid, energetic, up til 11 p.m. on her computer doing homework.
We suspected something was very wrong. We thought she had mono, so we brought her to YUHS for an exam. There the doctors and a nurse examined her and were mystified at what they saw, but felt sure it was just cold sores and probably the start of mono or Epstein-Barr. So they took a throat culture and sent her home to take ibuprofen and use a mix of Maalox and no-dye Benedryl (she is allergic to Red Dye #40 also) to numb the sores. They also gave her a prescription for codeine sulfate for the pain. They referred her to an optometrist for the conjunctivitis and she diagnosed it as an allergy to leaves or mold and wrote a prescription to treat it. She used it and it seemed to subside a bit but was still teary and caked at night. On Friday, we learned that the preliminary lab tests showed she didn't have mono.
Over the weekend, she developed targeted sores on her legs, and by Sunday night had angry red sores on her throat. I called the Urgent Visit department at YUHS and they told me to keep an eye on her throat. We were quite worried that this continued to get worse and that no diagnosis had been made. By Monday, it was worse so we took her in to see the ER doctor, who determined it was either infectious or an allergic reaction. They took 2 more throat cultures and the doctor made an urgent referral to a dermatologist for Tuesday morning. She was distraught and asked "What is wrong with me?" At one point, the doctor said her leukocytes looked low but changed his mind. My wife thought the worst: leukemia or another cancer. We kept a close watch on her overnight, treated her symptoms with Benedryl, Maalox, and codeine sulfate. During this entire time, she ate nothing at all and slept 20 hours every day. We gave her constant fluids and finally got her to drink Ensure through a straw. We taught her how to gargle with salt water and follow with a rinse, then Listerine in the hopes we could get rid of the mouth infections. We stopped the ibuprofen because she was on the codeine sulfate.
On Tuesday, her regular physician, who had been on vacation, returned and examined her, and immediately sent her to the dermatologist. He looked at every sore on her body and in her mouth, then told my wife it appeared to be SJS and he needed to take a biopsy to be sure. He took a plug out of her leg that required 2 stitches to close and sent it off to the lab. He also gave us a prescription for SJS if it got worse, but he felt Carissa had turned the corner and was headed back to normal soon. By Wednesday, she was able to eat pudding and was staying awake about 8 hours, but still couldn't speak because her tongue was swollen.
By Thursday, Carissa was at about 70 percent of her normal self, sores were going down in her mouth, and she could eat and drink a little more. On Friday we got calls, first from the pediatric triage nurse to say they confirmed a diagnosis of SJS, then from the dermatologist to say the same and tell us that if she didn't get better, to come right in.
On Saturday, our little girl was 99 percent back to normal, ate breakfast for the first time in 2 weeks, and was smiling. We were very happy to have her back.
So she now must watch everything she eats or takes, and we have also eliminated Red Dye #40 from our cupboards as well as ibuprofen for her. The doctor told us she can get this again at any time if she ingests medicine that causes it. Carissa will return to school on Monday after being out a whole week and three days. She's a happy kid once again and we can get some sleep also. We have alerted officials at her school and the people she works with to watch for similar symptoms in other children, because SJS is so rare and so hard to diagnose. We will continue to educate people and spread the word about this frightening condition. Sincerely, Thomas R. Violante

Name:: Mary Nazir

Story:: I am nearly 13 years old. When I was 4 I had an allergic reaction to calpol. Suddenly, I came out in blisters. I was rushed into hospital in the night. They wrapped me up in bandages. My mum said to me that no one knew what was wrong with me. Then I went Manchester Hospital and they told my mum and family that I had SJS. My family prayed and prayed for me and even my school prayed. I very nearly died. But Allah listened to my family and my school and has brought me here where I am. I would like to thank everyone who supported me and I would especially like to thank Allah. I hope anyone else who has SJS survives. Mary

Name:: tracey

Story:: my boyfriend is a survivor of stevens johnson syndrom. he was sick about1 15 years ago. he totally floored the medical staff of ontario. apparently he almost passed on a few times. he lost skin layers fevers, blisters, affected every part of his body. he found out the hard way like all the survivors. he was beeing treated with anti-inflamitories for juvinille artheritis, something he was supposed to grow out of, but because of this disease he still suffers from relentlessly. along with cronic acid reflux due ti hiatal hernia, bad nerves, and very sensitive skin and of course rhumatoid artheritis. i mean the guy is a saint, while living in daily cronic pain he has managed to father 3 beautiful daughters, holds 2 jobs at about 70 hours a week, and still goes and lays in the mud at ungodly hours of the mornings hunting, loves to ride a harley and go four wheeling. as active as he is, i see him in the morning and you can see the pain in his eyes. he won't show it on purpose, the average joe wouldn't even know how much pain he is in. to me he is a piller of strength and i admire him greatly, along with every one else out there living with your cross, we all have one to bear but your is a big one. good luck and take care. tracey

Name:: Nazli Greenland

Story:: I am inserting an except from a sufferer's mother.
Hi Everyone,
Firstly I would like to start by thanking everyone that has offered up prayers for my son, visited the hospital, my home, phoned to enquire how he was, sent e-mails and just generally everything that all of you have done in our lives within the past three weeks. My family is eternally grateful.
My son Dwayne is 18 years old and has recently being diagnosed as having STEVENS-JOHNSON SYNDROME. (SJS). For those of you who don't know what this is, it is an incurable disease (at present) that involves the skin and mucous membranes. SJS is a serious disorder with the potental for severe morbidity and even death. It is estimated that 1 in every 6 million people get it and the ratio is far greater in male than in females.
Dwayne was diagnosed 3 weeks ago as having a very bad case of chicken pox, which incidentally started out as a fever, cold sore on the lower lip and "spots" on his left arm and back. However within 2 days, much application of calomine lotion and a course of anti-biotics, his condition seemed to deteriorate and was admitted to hospital whereby they started running an IV drip as he was now dehydrated. Seeing that his "condition" was considered "infectious" he was then transferred to an infectious hospital but within 24 hours we found that his condition was worsening yet again and the "spots" were now blistering all over the body and causing immense pain. At this stage, the size of the blisters differed in size from the of a 20c piece to a dollar size coin. He was now experiencing severe pains in the kidney area and was not able to pass water. He was also not able to eat as the blisters were now in his mouth and throat as well as the nose which made his breathing very laboured. It was by sheer luck that despite the blisters being in his ears, his hearing had not been affected. He looked as if someone had taken boiling water and sprayed it on his body causing burn mark blistering.
Once again, I was in the ambulance with my son and back to the Avenues Clinic as the infectious hospital was totally at a loss as to what to do now. On arrival back at Avenues a Specialist was called in (yet again!!) and Dwayne was immediately diagnosed with SJS. Not knowing what the disease was all about, I was however grateful that at least there was someone who knew what they were talking about. By this stage it was also discovered that he now had partial sight in both his eyes as the blisters were still spreading and growing. He was given another IV and was immediately injected with steriods to keep both the kidneys and chest cavity from failing. This started his 6 day stay in the hospital with continuous drips and injections to keep his body going. His temperature kept shooting up and the pain had to be eased by the pethadine injection 3 times a day (which he suffered withdrawal symptoms from once he came out of the hospital).
Dwayne was released early from hospital instead of the initial 10 days that the Specialist wanted him to stay as he was suffering from great depression and we were therefore advised to take him home.He crys constantly when he looks at himself in the mirror due to the marks and the amount of weight that he has lost. This is a disease that we have received councelling over and that he knows that he has to live with from now on. Upon further tests and investigations we have now found that this condition was brought on by the intake of Brufen tablets (a relief for muscular pain). Apparently the disease was dormant in his body but on taking one Brufen too many, decided to make its appearance known. Dwayne plays soccer, cricket, swims and is a very sporty person.
Despite having this disorder, it is our every intention that Dwayne will continue to enjoy everything that he has in the past. It is also my intention to set up some sort of trust fund as he has to travel to South Africa to see another Specialist who can advise us on the re-occurances of the illness and his diet. With the continued help of my friends, we hope to hold various fund-raising events and I personally hope and pray that you will all attend in order to help me to make my son's trip a success. I thank God every day that he is still with us. Dwayne does not look the same, but will always be my very beautiful son.
Lastly, kindly pass this mail to everyone that you know. Please be aware of what tablets you take, LIFE IS VERY PRECIOUS. Once again, thank you all very much Much Love Dwayne Jordache Max

Name:: Thorma Copeland Smith

Story:: i was in prison and the dr. gave me keflex knowing that i was allergic to penicillin.i stayed in the prison infermory for one month before my fever broke and i came out of the dilusions from the fever. i came out because God told me it was not my time.

Name:: Annalisa Donoghue

Story:: My name is Annalisa and I got Stevens johnsons syndrome 4 years ago from an allergic reaction to penicillin, it nearly killed me, and made my life miserable for the last few years due to complications. I hope my story will make others aware of this syndrome.
It was my first year of secondary school and I had just turned 13, the year was 1999, and on a warm may day coming home from school I felt unwell, my mother brought me around to the doctors the next day, and he diagnosed me with a chest infection, and gave me some antibiotics to clear it up, everything was going ok for the first couple of days. I stayed at home and took the medication as directed. Then after a couple of days I began to develop strange symptoms, my eyes became itchy, and my mouth began to fill with big transparent blisters, my mother became extremely worried and took me around the doctors the next day, all that was said was that I just had a yeast infection in my mouth, and a mild eye infection, I was sent home with more medication. Worse just went to worse as I began to develop raw red sores around my vulva, it burned when I went to the toilet, the pain was getting to bad, and my mother had to phone the doctor instead because I was too weak to get out of bed. When she explained what had happened the doctor said to get me to a hospital as he was out of ideas. I spent the whole day in the accident and emergency waiting area, when I was seen to none of the doctors could tell what was wrong with me and took me in immediately, one after another they observed me but could not come up with any answers, and still they kept me on all my medications, by this stage my mouth had become so inflamed with blisters the skin was just falling off and I could not eat, they put me on a drip and continued to research what could be wrong with me. They came to believe that I had the herpes simplex virus and that it was running through my whole body, they just gave me more and more medication, but nothing was working, and time was running out, the next couple of weeks are a blur to me, because I was so weak and exhausted. At that stage my whole throat was filled with huge blisters that jus burst and caused more damage, my bodily skin was filled with target legions and my eyes had become blood red, all my eyelashes fell out and the skin around my eyes began to seize up, when I woke up in the morning the nurse would have to pick them open, the pain was unbearable and my mother became depressed, as well as the rest of my family, my brother and sister were not permitted to see me as my appearance would frighten them. Another week went by and my condition got worse, my vulva was filled with blisters and it began to seize up too, I went from 140 lbs to about 105 lbs, all in a month.
Finally after struggling they took me off all medication and just gave me steroids and kept me on a drip, I slowly began to recover and after a week I was able to eat again, When I fully recovered they still didn’t know what caused it, but it was some sort of allergic reaction. Yet I was not leaving without scars, and I was told that my lungs and internal organs had been damaged and that the severity and extent would not be known until later on. I suffered with occurring chest infections asthma, eye infections, and a low immune system, and lost out on a lot of school, which in turn, made me very depressed. Then just as I thought the nightmare was over, in the fall of 2002 I was given penicillin to clear up a bad chest infection, after a few days I recognised the symptoms and my heart began to race (they still did not know at this time that I was allergic to penicillin) I told my mother and she brought me back to the doctors, the symptoms were very light, and only in the first stages, but I knew they were the same as the last time, the doctor checked me and seen the first signs, he also noticed I had a very fast heart beat , and sent me to hospital, I was taken in immediately , and taken off all drugs, they then told me that it was penicillin that caused my last and current reaction .Luckily that I got to the hospital fast my symptoms that time were not as bad , but did hinder my recovery from the previous time. I recovered and went home, knowing this time not to take penicillin and to be more careful of what I take, I always warn everyone that I am allergic to penicillin, even the doctors. I am now seventeen years old and am doing my last year in school, I am still suffering, but am recovering slowly .I would like to thank everyone who had patience and love for me while I was sick, my family, my friends, the doctors, and my teachers, without their support I would not be where I am today. I would also like to thank the Stevens Johnson Syndrome foundation for setting up this page, it has helped me realise that I was not the only one out there, and that there are many other people like me. I hope my story has helped and other suffers and opened people’s eyes to the syndrome. Thank you for reading my story.

Name:: Stephanie Page

Story:: Cont'd. if anyone could let me know if this SJS is considered a syndrome will it be in the system forever, just like other syndromes. And can it come about again, because I am worried that because my son did not have as severe reatction as the other cases of SJS, does that mean that he will never get it again. His Dr. doesn't know if it was from his infection or the antibiotic Augmentin or Keflex. Plese help me to understand!!!!!! Thank You so very much Stephanie

Name:: Michael and Janet Turner

Story:: My husband, Mich (Mich), had a bad reaction to the pain killers he was given after surgery for carpel tunnel on his wrist and a similar surgery on the elbow joint of the same arm. This was before we met, so I don't know all the details. His body blistered inside and out,turned bright red and was like a serious sunburn from the inside out. He swelled all over and gained 60+ pounds in less than a week. His body produced that much fat to store the toxins from the drugs that his system could not dump fast enough. He says the pain he endured was so intense that he ground his teeth to the extent that most of them are shattered. [He has since had to have most of them pulled because of the decay, infections, and abcesses, using a local anesthesia that caused little reaction for him. When the rest ciome out he wants to try acupuncture. Most of the 17 teeth he has left are rapidly decaying and will need to be pulled too. Imagine, dentures before age 46.] The medical staff in one of the largest hospitals in our metropolitan area of 400,000+ gave him several different drugs to counter act the symptoms he was experiencing, but they only compounded his adverse reactions. He was finally diagnosed as having SJS by someone and they discontinued some (maybe all) of the drugs they were giving him. Every time he has tried to lose the excess weight he gets sick from the toxins that are still stored in the fatty layers of his body. He is attempting weight loss again-very slowly. Just recently, he had a heart attack scare after a trip to the coast that shook us both. I turns out he probably is allergic to iodine, and eating shellfish causes cardiac arrest in those people. In the emergency room he was given nitroglycerin and some other drugs after we told them about SJS, and they said there would be no problem. He had a horrible rash with severe itching over his whole body from that 1 dose. He still has traces of the rash a month later. His story was much more dramatic than I told it, but I'm not sure he would get around to it. Unfortunately I don't know what drugs he was given in either event, but he refuses (as he MUST) to fill or take any sort of prescription medications. We are amazed at the insensitivity and ignorance displayed by "professionals" in the medical field, especially after we tell them that adverse reaction to drugs they want to give him could kill him. ---- Now, my own story. I lived on an overseas military base from '79-'82. I was hospitalized and given a sulpha drug after a bad case of shegella (Spelling?) food poisoning. After just a few days on the sulpha, a friend was visiting me and noticed that I was quite disoriented. One of my upper eyelids began to inflate like a balloon, intil it was a hugh blister. Then, half of my upper lip swelled in the same manner. My friend was growing alarmed, and insisted I come to her home with her so she could keep an eye on me. While we walked the few blocks to her house, the base of my left thumb swelled up too. Fortunately my friend suspected that it was the medication I was on. She suggested I see my doctor. I saw another friend who was leaving the medical center as I went in to talk to my doctor. She later told me that the vacant, glassy look in my eyes really made her quite concerned about me. I saw my doctor and demanded he take me off the sulpha, but he simply dismised it as unrelated. It took another day or too without the sulpha to realize I could take myself off it. I was flying higher than a kite that whole 2 weeks. Anyone could have come to steal all my earthly posessions while I was home, and I probably would have volunteered to help them load it all up and wished them a wonderful journey when they left. My former husband left for work at about 6:30 AM. I got up at 6 to make his lunch, but he would have to finish making it before he left. When he returned from work after 5 PM, he would find me sitting on the couchin my pajamas trying to figure out what I was supposed to be doing, so he'd have to cook dinner too. When I was 14, penecillin given for a bladder infection caused my fingers to peel for months. They did the same thing at that same time of year for 10-15 more years. The last 5 was just under the tip of my nails. Each year the peeling decreased slightly until it finally stopped. After an automobile accident in 1999, I was given pain killers and sleeping pills to help normalize my sleep patterns again. Even the quarter to eighth doses of the few doses I did take a few times made me so dopey I couldn't wake up or function until about 4 PM the next day. After hearing Mich's story and reading others experiences on this site, I think these are precursors to more serious reactions that could occur if I still took prescribed medications. Are there any studies about brain / cognitive malfunctions related to drug reactions? I'd like to know. Mich and I(especially me)have been fortunate to not have had more serious reactions. Now we are vigilantly cautious.

* CONTINUED *

Name:: Janet Turner

After reading further on this site, I have learned that the antibiotics I was given for strep throat nearly every year for most of my chilhood are most likely the cause of the life-robbing 10 years I spent recovering from severe chronic fatigue syndrome, fibromyalgia, and near death after every system became toxic and began shutting down. I lost so much weight I looked like a walking, jaundiced skeleton with straw for hair that would break off easily. After not being able to go to social functions for 18 months, friends I'd known for years didn't recognize me and blew me off when I finally did go back to church. I stopped one and asked why she wouldn't talk to me. All she said was, "Who are you?" My body reabsorbed all the fat layers and began feeding off the nutrients in my major organs until malnourishment and excess toxicity nearly killed me. I felt incredible pain in every movement of every muscle and joint. I didn't get deep REM sleep and was severly fatigued all the time. Medical doctors laughed at me, said it was all in my head, and one even told me I must have HIV so I shouldn't worry since I would most likely be dead from AIDS soon any way. Fortunately their ridicule made me angry enough to swear off regular medical doctors and turn to a Naturopathic Doctor for help. The results of a blood test alarmed this alternative Dr. so much that she immediately put me on a rigid and very limited organic diet. She recommended myriads of natural substances - all without reaction except soy (this is used in making anesthesias and might have done me much harm when I was scheduled for surgery had I not mentioned it)-: vitamins, minerals, amino acids, digestive aids, juices for detoxification, and herbs ect. to cleanse and rebuild my body. I've gained weight, (too much now-I went off the organic diet, but am going right back)gotten back into dance, sports, outdoor activities, and I am drinking pure water again. A much fuller life again, but this is now 14 years later. I still get severe muscle cramps in my legs, and can tell somethings aren't quite back to normal yet, but I am alive, still seeking a healthier me, and have much hope for a great future. Now I know what probably caused all this trouble.

Name:: Zachary

Story:: I was diagnosed with Stevens Johnson Syndrome December of 2002. I had developed the syndrome due to taking an antibiotic known as Tetracyclin. I had been taking the medication because I was having some trouble with my skin. After 7 days of being on the medication I found myself with the flu, or at least I thought so. 3 days after what I thought was the flu I woke up with a swollen right eye. As the day progressed I started to feel tired and the flu symptons seemed to only worsen. I woke up from a nap to find a red rash all over my chest and my throat felt as if it were closing. I told my mom what was going on and we went to the Emergency Room. At first the nurses had no idea what was wrong with me. The rash continued to grow onto my neck, face, arms, etc. I remained in the ICU of the hospital for 3 long days (on absolutely no pain meds) until finally a dermatologist diagnosed me with TENS. I was rushed to a near by burn center where I had to undergo Skins grafts and other surgeries. I had no clue what was wrong with me. I was so scared but very dazed at the same time. When I finally woke up after the surgery I was screaming in pain. I kept telling my mom that I was on fire. I spent 2 weeks of hell in the burn unit. I've never experienced so much pain in my life. My family and girlfriend were by my side every day that I was there. It was so frusterating to not even be able to look at them (my eyes were almost sealed shut). Finally after 2 weeks and 3 days, a life load of pain, and physical rehab I was released. I spent the next month or so in bed, and eating, trying to regain my strength. Here I am, almost a year later and I'm still suffering from various side effects such as ingrown eyelashes, dry eye syndrome, my fingernails have fallen off some have grown back, but they are cracked and deformed, and my skin is VERY sensitive and I find myself breaking out in hives for no reason. I've been a lot more conscious of my health, and diet, so I can possibly prevent something like this from happening again. Even to this day, I still have reoccuring nightmares of my stay in the hospital, and uncontrolled flashbacks. I've been looking for a therapist but I've yet to find one who deals with PTSD (post traumatic stress disorder) under my insurance. Even though what I've been through was hell, I thank god every day for blessing me with life. I will try to work through the long term effects. I just wish the FDA/ Doctors would warn consumers. If I had known that such a horrible syndrome existed I would have done anything in my power to avoid medications. Anyone who's experienced SJS/TENS, or has had a family member go through it my thoughts and prayers are with you. Thank you for reading my story.

Name:: Andi Alper

Story:: It has been almost a year since I was diagnosed with Stevens Johnson Syndrome, ane it was the most traumatic experience of my life. I was only 12 when I got it, and I was in the hospital for 2 weeks. It was the longest 2 weeks of my life. I nearly went blind had I not said somethign about the pain in my eyes. Surprisingly, I was one of the lucky ones. I ONLY had blisters covering my entire body, inside and out, and dried blood covering my lips. I was very weak and could barely walk. I also had high fevers, throwing up blood, and even a few cases where I was deliorious. I got Stevens Johnson Syndrome from the acne medicine, Tetracycline. After coming out of the hospital, I was severely "out of it". I had to go through therapy in order to feel better. It was the worst experience of my life. I will never be the same.

Name:: Jumeck Smith

Story:: It all began September 11, 2003. I woke up that morning and my top lip was swollen. I thought that I had come contact with shrimp (I’m allergic to shell fish), and so I did not think it was serious. The next morning, Friday, September 12th my lip was still swollen, and the swelling was painful, I paged my doctor who told me to stop taking all the medications I was on, and to come see her Monday, September 15th. I had planned on moving that Friday, so I continued on with those plans but I had no stamina, and I had developed fever and was having extremely bad headaches. By Friday night I was too weak to move into my new apartment, so my brothers told me they would finish the job, and I went to my mother’s home to sleep. Around 4am I woke up and both my lips were swollen, my fever had gotten worse, and my bottom lip had split open. I went to the emergency room of a local hospital where they gave me steroids, benadryl, Tylenol and Motrin. They contacted my doctor who told them not to admit me, and not to give me any antibiotics. They released me about 8am that morning, with a diagnosis of acute mucositosis, and I went back to my mother’s home. My fever continued and my lips continued to crack and develop sores. By that time my feet were also becoming sore, and felt like they had been burned when I tried to walk. I went back to my apartment that Saturday evening and slept all day. By Sunday, September 16 I felt terrible. The fever would not break, I felt like I was literally burning, I had chills, and my lips were awful. I had developed sores in my mouth, and my lips looked like I had been in a fist fight. My mother called to check up on me that Sunday night, and asked if I wanted to back to the emergency room. That phone call saved my life.
My brother came to pick me up to take me to the hospital; I could barely walk to car. Every step felt as if I were walking on hot coals, my brother had to carry me to his car. We went and picked up my mother, and went to emergency room of the county hospital. My skin had started to blister, my fever was 103.3, and my lips made it almost impossible to talk. When I got to the emergency room, they took my vitals and immediately admitted me. The doctors could not figure out why my fever was so high, and could not bring it down. I began to cough up mucous uncontrollably and started having hiccups. By Sunday morning the blisters had spread all over my body, and my feet had swollen with fluid. The most pain came from my lips and inside my mouth. The doctors gave me antibiotics just in case I had an infection, and began to give me morphine to manage the pain. By Sunday night my face had changed completely. It was swollen, covered with blisters, and my skin had turned black. For a week I remained in the hospital receiving steroids, benadryl, antibiotics, and lots of morphine. I would wake up some mornings with my eyes sealed shut... I would have to use my hands to open my eyes, and peal off the crust and dead skin that surrounded them. My appearance was monstrous, and the pain increased day to day. By week two, I was transferred to the intensive care burn unit, the first day I received my first acid bath. The doctors operated on my feet and genital areas. They scrubbed my body to dry out blisters and remove dead skin Because of the sores in my mouth it was too painful to eat, so the doctors put a feeding tube through my nose so that I could eat. That week I was given two more baths, the dead skin itched and peeled. I has happy to peel the black skin off my face, and since there were no mirrors in my room, I thought that the skin underneath was my normal complexion. My lips were still in bad inflamed, they were covered with sores and would bleed frequently. The doctors and nurses told me to apply pressure to the spots that were bleeding, but both my of my lips were covered with open sores, so that technique did not help. I began to crave food, but when I tried to eat or drink anything other than water, the pain in my mouth would not allow for it. Finally, the day prior to me being discharged I discovered a mirror in my hospital room, and was horrified by what I saw. My lips were swollen and red, my skin was discolored so badly that I could not remember the true complexion of my face, the skin around my eyes was white because the crust around them peeled daily. In addition to all the pain Steven’s Johnson Syndrome had caused, I now had to deal with looking at a reflection I did not recognize, and even harder to accept. After the two weeks in the hospital the doctors decided that if I could manage the pain without a morphine pump, that I could be sent home. A day before I was released my morphine pump was taken away, and that is when I realized just how much the morphine had helped me over the past two weeks. The pain was excruciating, and I itched all day long.
I was happy to return home, but I quickly learned that being discharged did not mean that I was well. Because the doctors had operated on my penis, urinating was painful. I could barely walk, and I was extremely weak. The sores in my mouth made it too painful to eat and I lost 20 pounds in less than two weeks after being discharged. My lips continued to bleed daily, but my feet were healing very well. After about 3 weeks my lips began to form scabs, so the bleeding was not so bad. The scabs however looked awful, I called them my monster lips, and I could not get them wet. I wanted my lips to heal so I had to find ways to clean my mouth without getting the scabs wet. It was a very frustrating time. My recovery since September has been well, but slow. Now, November 6th, 2003 there are no blisters or open sores on my body. The skin on my chest, stomach, neck, and legs looks as if I had a really bad of case of chicken pox. I’m African American, and SJS has left my skin’s complexion discolored, and much darker than before SJS/TENS. Right now skin is still evening out, the doctors say that it could 6 to 12 months before the scars/discolorations fade completely. They also say that some of the scarring will be mine to keep. My lips fully healed a few weeks ago. They are different colors also. The new skin on the palms of my hands and feet is like a baby’s skin. All of my finger and toe nails have or are in the process of falling off, I hope they grow back. Recovering has been slow and is depressing at times. Although I am grateful for things SJS did not effect.

Name:: Geoff Stralow

Story:: Thank you for your site. It is heartening to know that I am not alone in my experience of SJS. Some of the stories I've read from fellow sufferers are truly inspiring and my heart goes out to those who have lost loved ones to this insidious disease. Before I got SJS I was a fit 50+ year-old school teacher who had never had any time off in thirty years. My experience with SJS began with a knee operation in October, 2001. I had a reaction to Keflex being used to stop infection. My initial reaction was not extreme: I had a purple rash, sore eyes, lost my sense of taste and smell, lost my voice, lost 12kgs over a few days. Since then my knee has improved but the rest of me has been affected to the point that I can no longer work. In December 2001 (Christmas day) I just stopped functioning normally. I had massive headaches, fatigue and muscle and joint stiffness. I had difficulty walking or even standing up. I lost my voice and had major problems with my eye muscles, being unable to focus. My GP thought that it might be a relapse of SJS (this is the first time I'd actually heard the name of this condition) and sent me home to rest and take analgesics. I recovered sufficiently to get back to school in February 2002. It was a real struggle to keep going. I would feel pretty good then a short time later feel like a balloon with the air let out. I struggled through until late May when I had a major setback that ended up with me in hospital being checked out for some sort of vasculitis and underlying connective tissue disease. I learnt a lot about auto-immune conditions in hospital, but all the tests and biopsies I had were inconclusive. Two years after my SJS I am still being managed with cortisone and other medications and still experiencing relapses of eye problems, voice and hearing problems as medication changes or as I become stressed or fatigues. My major problems are the amount of arthritis and myalgia I experience and the chronic fatigue that stops me from moving. I respect greatly those who suffer chronic pain. I am having more good days now than I did before and I feel like I am winning, though I've had to retire from teaching. Some days I feel great and think that I could teach again only to "hit the wall" and be flat on my back for a few days. I hope that this improvement continues, that I can get back to helping people and that nothing important falls off in the meantime. I have learnt to appreciate life and family more and can see much positive coming from this experience. I ask for any SJS sufferers with longer-term effects to contact me so that I can support my premise that what I am experiencing is the result of SJS. To me, it's like someone pushed a button and switched off my normal life and my profession in October 2001 when I was given Keflex. Can anyone help me find this button and turn it back on again? I thank you for your support and pray that God will keep you in the palm of His hand. God Bless, Geoff Stralow

Name:: Dawn Marie Woodruff

Story:: Hi, my name is Dawn and I had a horrific experiance with Stevens Johns Syndrome November of 1999. I was 22 years old, started a new job with very much potential that October. I was working for a grocery store as managment trainee and was very excited about going to work everyday. Well every year the company does flu shots for the public. The last flu shots at this store were November 11th and the store was busy. I had passed on my flu shot that year because my doctor did not recommend the flu shot for "health young people" like me. I was getting up and ready for work on November 13th and was running a slight fever with some flu like symptoms. I figured with the flu shot going around maybe on of the customers had come down with some symptoms and had shared them with me. I went to work and tried to fight the sick feelings. At work my fever got worse and a coworker had offered me some Ibuprophen to help lower my fever. Afew hours later I just could not continue, so I went home to rest. I slept that whole day away and woke the next morning still feeling under the weather. I had taken a dose of tylenol and again slept the day away. I awoke on what was now Monday morning to find I was breaking out in a rash on the palms of my hands, this has never happened before. I go to my doctor and am placed on prednisone. by mid afternoon and taking about 1/3 to 1/2 of the dosing of prednisone the rash had moved to the backs of my hands and wrists. I went to bed that night and woke at 2am because I could not breath with a funny taste in my mouth. I was at home with my parents and my mother got me to the hospital right away. At the hospital the nurse took me right in. I had not gotten a look at myself and if i had I would have known why the nurse was so quick to take me, the rash had spread to my face and neck. In the hospital I was given Benedryl, I did not have any insurance yet because of the new job so a social worker was with me as the blisters were starting to fill on my arms face and neck. I was admitted right away when this happened and placed in my own private room. The staff had never seen anything like this and had no idea if I was contagious or not. The physician on duty was due to make her rounds at 7 or 8 am and at this point my eyes were starting to dry up and blisters were forming in my mouth and throat. I was only in my own room for a few hours when it was decided that I needed to be in intensive care. It tool the physician that was following my cases a day to diagnose me and tried to explain to my parents what it was and the courses of treatment. I was in that hospital ICU for a few days as the doctor tried frantically to get me moved to a hospital with a burn unit. Because I had to rely on state funds now no ambulance wanted to take me. My father got on line and emailed heads of state and friends pleading for help for me to get transfered to a hospital to help me. This hospitaal tried as hard as it could to keep me comfortable by calling in pharmacutical companies to give me some kind of burn dressing/ A rep made it out right away and showed the nurses how to apply and treat the bandages. The night nurse had not been there to see or I don't think she listened when it was explained to keep the dressing moist. The dressing on my face and neck had dried and my arms and chest were still a little moist. she had come in to remoisten the wrappings and the part that had dried on my face fell off. The blisters were begining to burst, at least the noe on my neck was leaking and stuck to the bandage. I was fairly out of "it" on morphine as I wanted to just remove the wrappings. The nusre tried to wet them and hoped they would fall off and to no avail the blister on my neck busted open and went with the bandage. I screamed for a while and could not get anymore morphine for at least two hours. I shook and moaned in pain the rest of the night. The next morning I awoke to my pastor telling me that a ambulance was on its way to take me to a hospital that could treat me. My fathers email had gotten the attention of four area hospitals that were now fighting to have me. Because of the standings my family choose Johns Hopkins Bayview Campus in Baltimore MD. I was transported and arrived an hour later to shadows standing over me. I heard on doctor say something about burn wrappings and got histarical, my family in the waiting room could hear me scream. Next I remember waking up a few days later with wrappings on my arms that felt like a dog trainer would wear and a piece of silver gause on my neck, I threw it off as soon as I realized what it was. A wonderful nurse walked in to let me know it was Thanksgiving and if I was up to eating I could have some turkey, but i might not be able to eat so he would go to the Kitchen and get in IV form if I so desired. The next evening the same nurse came in to get on my case. I had not been out of bed for almost two weeks and not seen myself, so he informed me that I had liver complications as well. I was being moved to a Gastrointestinal unit for further care. My skin was ok enough to send me to another unit. This was somewhere near the beginig of the week and I told my doctors I was going home on Friday.A resident doctor was following my care and came in one morning to inform me that a liver transplant team was watching my progress, I tell you that sure beat not being able to have a cup of coffee, I was up for hours wondering what in gods name had happened to me. Needless to say I was still determind to go home on Friday. It was now the first week of December, the food was awful (IV) the view was ok, but I wanted to go home. The Thursday night before I said I was going home the nurses came in to say goodnight and shut the door slightly. I was tring to dose off when all of the sudden I could smell Roses the prettiest roses I have ever smelled, and a warm feeling of everything will be fine came over me. Needless to say ALL my mucus membranes in my face had dried up. My doctors came in the next morning and said I was ok to go home. Four years later I still have teams of doctors at Johns Hopkins Bayview, downtown, and Greenspring station campuses. My liver healed completely after about 9 months. I have undergone 7 eye surgeries, 2 eyelid margin rotations and 5 electrolisis to remove many eyelashes. I had been asking in my head why me? I read an email the other day that gave me some glimer of hope or at least put things in the right perspective.
THE ANT AND THE CONTACT LENS
A true story by Josh and Karen Zarandona
Brenda was a young woman who was invited to go rock climbing. Although she was very scared, she went with her group to a tremendous granite cliff. In spite of her fear, she put on the gear, took a hold on the rope, and started up the face of that rock.
Well, she got to a ledge where she could take a breather. As she was hanging on there, the safety rope snapped against Brenda's eye and knocked out her contact lens.
Well, here she is, on a rock ledge, with hundreds of feet below her and hundreds of feet above her! . Of course, she looked and looked and looked, hoping it had landed on the ledge, but it just wasn't there.
Here she was, far from home, her sight now blurry. She was desperate and began to get upset, so she prayed to the Lord to help her to find it.
When she got to the top, a friend examined her eye and her clothing for the lens, but there was no contact lens to be found. She sat down, despondent, with the rest of the party, waiting for the rest of them to make it up the face of the cliff. She looked out across range after range of mountains, thinking of that verse that says, "The eyes of the Lord run to and fro throughout the whole earth." She thought, "Lord, You can see all these mountains. You know every stone and leaf, and You know exactly where my contact lens is. Please help me."
Finally, they walked down the trail to the bottom. At the bottom there was a new party of climbers just starting up the face of the cliff. One of them shouted out, "Hey, you guys! Anybody lose a contact lens?"
Well, that would be startling enough, but you know why the climber saw it? An ant was moving slowly across the face of the rock, carrying it on it's back.
Brenda told me that her father is a cartoonist. When she told him the incredible story of the ant, the prayer, and the contact lens, he drew a picture of an ant lugging that contact lens with the words, "Lord, I don't know why You want me to carry this thing. I can't eat it, and it's awfully heavy. But if this is what You want me to do, I'll carry it for You."
I think it would probably do some of us good to occasionally say, "God, I don't know why you want me to carry this load. I can see no good in it and it's awfully heavy. But, if you want me to carry it, I will."
God doesn't call the qualified, He qualifies the called.
Yes, I do love
GOD. He is my source of existence and my savior.
He keeps me functioning
each and every day.
Without Him, I am nothing, but with Him...
I can do
all things through Christ which strengthens me.
(Phil. 4:13)
Dawn Marie

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