Name :: BRENDA

Story ::    I'm not sure if I have SJS but I was on Vioxx for 2 years and my doctor recently put me on Bextra. I've been on this medication for almost 2 months. My sysmptoms aren't nearly as bad as others but I've had sores on my tongue 3 different times, my feet are swollen, and I've had a slight rash on my legs. At first I didn't htink too much about all the symptoms because I'm also diabetic. Now after reading all this information on SJS, my doctor will be receiving a phone call today. The tongue sores are extremely painful. My pain can be nothing like Julie's pain and all the others. God bless each of you on this journey. Doctors need to be educated on this dreadful sysndrome so they will beable to treat it effectively. Thank you for this web site. Brenda Linn

Name :: Harold Rodriguez       Email_address :: cuban042@aol.com

Story ::    Never in my life, i thought that i had to go thru something as horrible and unespected as Steven's Johnson Syndrome. About a month and a half ago, i started to take Viramune, a drug for the treatment of HIV.Everything was going well, untill about three weeks ago, when i started to feel like if i was coming down with a cold.I told my doctor, he said just to take some intibiotics, and i did,but the next morning i just felt worse.I went to the ER, hoping that someone would tell me what i had.A doctor then told me, oh, you just have the flu, and sent me home.That same evening, i noticed i had a temperature of a 103, and i could not control the chills.Then again, i went to another doctor, who told me the exact same thing, you just got the flu, although this time, he also told me that i had a little rash on my chest, rash that didn't bother me at all then, and i didn't pay attention to it.During that night, the rash became more obvious, and now was feeling like burning.In the morning i called my doctor and he said to get to the ER as soon as possible and to tell them that i had an allergic reaction to viramune, and that the name of this reaction was Stevens Johnson Syndrome.When i got to the ER, i told the doctor who admitted me in the hospital , what my PCP had told me, and they did not pay any attention to it, they were more interested in how i became HIV+, and my lifestyle, than in my current condition,so, their words were: You don't have SJS, but we are going to put you on atibiotics to prevent any other infections from occuring.What i didn't know was that the worst was yet to come.After making it thru the night, putting my family and friends thru so much pain, and not knowing exactly what was going on, my skin kept on getting even more burned.That afternoon, i called my doctor from my cell phone and told him what my condition was,and he recommended me to leave AMA, to go to a hospital in NYC.( all of this happened in a hospital in NJ.)
Once i got to the hospital in NYC, i was evaluated by a group of doctors and they comfirmed my diagnosis.Even though they told me that there was not much they could do, other than supportive therapy, i felt for the first time in those horrific days, that i was in good hands.
They placed me in the ICU, and explained to me possible chance of my respiratory system been compromised at some point, and that i had to be in the intensive care unit in case that happened.
THree days later i was transfer down to a regular medicine unit, and my sking started to look better, 4 days after that, i was discharged to go home.
Now my skin is almost back to normal, after pealing off like a sun burn, but my liver enzymes are still very elevated and my inmune system is all over the normal guidelines.
Now having told my story, i wanted to say thanks for all the support and help that i've found on your website, and for giving me the chance of telling my story, to help and to prevent others fromgoing thru this. Thanks again: Harold.

Name :: Candice Kazmir       Email_address :: charis_77@yahoo.com

Story ::    I was 18 when I went into the hospital because I had bronchitis and was prescribed bactrim a sulfa based drug. I took all the medication except for one pill before I noticed I could feel my tongue and started to itch then my throat started to close. I was rushed back into the ER and giving steroids and was told it could be an allergic reaction to the Bactrim because I had been on it too long that it was prolly and reaction to a different soap or something and I was sent home with something to help with the itching. I stayed up all night cause I could sleep I was soo uncomfortable. I returned to the hospital then next day because I was now beet red and started to get blisters…From here on out I was heavily medicated so the rest of my story is what I have been told. I was seen by several doctors and was set up to the floor with doctors still undecided with what was going on. The blisters were so bad now I had to be knocked out completely with morphine and placed on an air bed because I was totally covered in blisters. The next morning a dermatologist came in and diagnosed me with SJS and I was flown by helicopter to the closest burn unit because they said I wouldn’t make it in time by ambulance. By the time my parents arrived 2 hours by car they were told that I had 3rd degree burns on 90% of my body and had a 10% chance of living through the night. They totally debreded my whole body except for the tops of my hands, top of my head and the top of my right foot. I had burned from the inside out all my mucus membranes down my throat and even part of my small intestine. They use pig skin for the graphs and I was in the ICU in the burn center on a constant drip of morphine and so kind of amnesia drug. I did pull through amazingly with only 3weeks in ICU and 1 week on the floor with 2 years physical therapy and a burn suit I wore for a year.

Name :: Chad Turner       Email_address :: bakedsushi@yahoo.com

Story ::    Hi, In August 2001, I was diagnosed with TENS. I had been taking Lamictal, for bipolar disorder, for about 3 weeks when I started to get sick. The first couple days was just vomiting and fever. I went to the doctor and they gave me pregnizone for some reason not sure why. That night it got worse and My grandmother noticed blisters starting on my forehead and ear. She took me to the emergency room really early in the morning. There they were having problems diagnosing me even though I was telling them what was wrong. They thought I was going into anaphylactic shock because my blood pressure had dropped to 90/48, so they tried to stick the big needle in my heart but eventually they listened to me. Theys sent me to another hospital for a few days, but I don't remember much of that hospital, but everywhere that they touched or put any pressure on would blister up. Apparently, I had multiple organ failure twice while I was there and had to be revived. Then, I was lifelited to a burn unit in Lehigh Valley Hospital in PA. I do remember I kept getting yelled at for unstrapping myself and sitting up trying to look out the window of the helicopter. They kept me pretty doped up for the next couple of weeks. I remember the nurses made it a daily routine to cut open my blisters and peel off as much as skin as they could and then put these medicated sheets on me. I remember that that feeling was the most painful thing that anyone should ever endure. I would start out screaming and end up just rocking and shaking uncontrollably. My parents remember my funnier anecdotes from the first couple weeks, but I didn't even know the nurse that took care of me the first week when she came back from vacation two weeks later. The last two weeks weren't as bad. Most of my time was spent peeling off dead skin like when you get sunburnt. In total I lost a layer of skin off my entire body and my fingernails and toenails. All in all, it was the worst experience of my life, but hey I survived so I guess it could have been worse.
Thank you

Name :: shaneika       Email_address :: sglanville@hotmail.com

Story ::    KINGSTON JAMAICA
Nine-year-old seeks help
BY KAVELLE ANGLIN-CHRISTIE-STAR Reporter


Sashana Russell

SASHANA RUSSELL, LIKE any other nine-year-old girl has dreams ­ hers is to become a doctor. But because of a problem with her eyes, she has been unable to attend school for over a year, hence making it more difficult, if not impossible to realise her dream.

Sashana suffers from Steven Johnson Syndrome. In what she describes as "seeing foggy", her doctor at the Bustamante Hospital for Children, told THE STAR, "no one is quite sure what causes it (disease)...but it is an auto- immune response to antibodies fighting against its own tissue... Inflammation that can occur as a result of taking drugs." In Sashana's case, the disease affected her skin, eye membranes and surface.

Feel dunce

Sashana, a former student of the Osby Hall Primary School in Kingston, stopped attending school while in grade two, because of her eyes. With the innocence of a child, and the maturity of an adult, she told THE STAR, of how her absence from school makes her feel.

"My favourite subject was math, because I can do math good...I feel bad because I don't get to go back, and it makes me feel dunce."

Sashana's mother, Carol Clemmings, says, "She went to the country for the holiday last year, and she became increasingly ill. Her skin and eyes were affected, and her skin had lots of bumps and broke out into sores."

Clemmings, 34, who is currently unemployed, but is qualified to do hairdressing, sewing, and bartending, say Sashana's illness, which can only be corrected by surgery, will cost US$10,000 (JA$610,000).

Sashana did surgery on her eyes once before, in May of 2003, but there was no improvement.

The insightful little girl, said she loves writing stories, but is now unable to do so: "I love writing stories, but I can't do it anymore because I can't see...and I had a lot of friends going to school and I miss them."

The surgery is unavailable locally and is readily available in the United States of America. Anyone willing to assist Sashana's can contact her mother at 876-938-2823 or 876-457-8227 or make donations to the Windard Road branch of National Commercial Bank account number 064338234.

Name :: Shannon K. Moore       Email_address :: skmoore@iamotelephone.com

Story ::    I’m not sure how beneficial my story is to your work, but after finding your site today with an opportunity to write, I felt compelled to share my story.

Two years ago, my now 14 years old son came down with a sinus infection. We were not able to see a physician for 2 days and over-the-counter medications were not giving him any relief. A few weeks prior, I was prescribed Bactrim for the same condition. Hoping to help ease his discomfort, I gave him half the dosage of my prescription. This was in the morning prior to school and by 10:00 a.m. I was speaking with the school nurse. My son had a severe rash covering the upper section of his body. Assuming he was having an allergic reaction, she gave him benadryl to control the rash. That evening he developed what seemed to be a large blisters covering his arms, back and shoulders.

The next day when we saw our physician, I conveyed the events of the prior day and she agreed that the Bactrim was probably the culprit; she prescribed another antibiotic for the sinus infection and sent us on our way. She neither explained the seriousness or phases of the rash in detail nor did she give it name. A few days later the largest blister, covering his entire right elbow, seemed to come off in its entirety exposing his flesh. Since he had seen the physician and she did not seem too concerned with his skin condition, I was not too concerned about the situation. We kept the area clean, dry and concealed from exposure.

Today, two years later, I was prescribed Bactrim for a sinus infection and took a moment to read the possible side effects. I’m going to quote what was listed as I was completely devastated by what I read: “Rarely, this medicine can cause serious, even fatal, side effects such as a severe peeling skin rash known as Stevens-Johnson syndrome,…” Until today, I did not have a name for my son’s condition. Not only do I have a name, after reading the side effects listed and going on an immediate search for more information about Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis, I now know how serious my son’s condition was and could have been.

After reading this information, my emotions were on a roller-coaster ride. First, since the day my son was afflicted with this problem, I’ve been ashamed of my actions. As a parent, sometimes the pain of watching your child suffer…even from something as minor as a sinus infection…is overwhelming. You would do anything to help ease their discomfort. I’ve defiantly learned my lesson and will never give him a prescription drug without consulting his physician. Secondly, I’m concerned about the apparent non-concern my physician demonstrated about the rash. Did she not know what it was? Did she not know the possible severity of the rash? Did I display such concern for my stupidity that she possibly felt guilty in telling me about possible repercussions? If I had to guess, I don’t think she knew what it was…other than an allergic reaction to the drug.

First, I want to thank your organization as I’m sure the side effects printed on this drug are due to your efforts. I now know more about my son’s reaction to Bactrim. Secondly, I want to caution parents on the consequences of self-medicating yourself or your children. I thought that since this drug helped me it would help my child. Ironically, I know now that it could have had a fatal effect. Thirdly, somehow we need to make physicians aware of the seriousness of this condition. I believe my physician was uninformed and as a result, I too am further ashamed that I did not seek further consultation on his condition.

I do have a few questions I’m hoping you can answer.

1. Are there any long-term effects from this I should be aware of?
2. Are there other specific drugs that can cause SJS?
3. How best can I help inform my physician to this condition since it’s been two years?
4. Is there anything else I should know?

Thank you very much,
Shannon K. Moore

Name :: Natalie Dufner       Email_address :: nataliedufner@hotmail.com

Story ::    I was dx 9/13/00 and my craniotomy was 9/20/00. At that time I was 37 and working as an Intellectual Property legal assistant at a Huge Texas law firm. My wonderful neurosurgeon, Tom Kingman spent 10 1/2 hours but could not get out the entire mass (10 cm). I was left with minor motor impairment and sent to rehab. While there, my rehab doc continued to increase ny dilantin. Although I was suffering from side effects, it took me a few months to figure out which drugs it was from. I asked my mother for the PDR on Dilantin, she got it, I read it, paged my rehab Doc, who I refer to as Dr. Cocktail, and said I think I am on too high a dose, look at my chest and face, I am totally broken out, in addition to the fact that I am weaving around and vomitting all the time! He said not to worry there is no better anticonvulsant. 1 week later my parents rushed me to the emergency room where I was diagnosed with a hypotoxic reaction to Dilantin and the following day the Stevens Johnson Syndrome. This was 11/4/00. I returned to rehab here they told me my motor impairments would prevent me from ever running again. Here is the best part of the story: 11/4/01 I ran the New York Marathon(that puts Dr. Cocktail to shame!) My tumor started growing on 10/4/04 and I started chemo and just finished the San Antonio Marathon. So, I have a good story, because I have totally awesome Doctors--Lisa Fichtel, my Oncologist, Tom Kingman, my neurosurgeon

Name :: Jessica DeGroat       Email_address :: jessica4all2002@yahoo.com

Story ::    I am 17 years old and I live in Minot, ND, with my mom, dad, brother, and 4 year old sister, Kaydee, who was just diagnosed with SJS. Like, Julie, she was taking phenobarbrital for minor seizures. The morning of her 2 week check-up to see how the medicine was doing for her, we awoke to Kaydee having very red eyes, my mom decided to take her in early, thinking she had pink eye. The doctor, looking at her eyes, told us it was a viral infection and that she would be better if she just got some rest and drank lots of fluids. Later that day, she got progressively worse, her skin started to become red and blotchy, starting with her lips and cheeks. The next morning she was swollen up badly and she couldn't use the bathroom, she couldnt drink anything, and she wouldn't even eat ice chips. We took her in once again, but the doctor reassured us that is was viral and she would get better. Later that night, after my dad got home from work, my mom went on the internet and looked up side effects of phenobarbrital, right away, she knew that it was related to the medicine and rushed her to the emergency room, for fear of dehydration. It's been two weeks since all of this happened, and we can luckily say that she is getting better by the hour. She is in a drug induced coma right now, so she will not pick or scratch at her healing lesions, however, the doctors at the Children's hospital in St. Paul are saying that she won't be out of the hospital in time for Christmas. My family and I would like to take this chance to give out Kaydee's website address: http://www.caringbridge.org/northamerica/kaydee/ Thank you to all of the people that have made this website available, for without you, my little monkey may have died, and we would have never known why.

Name :: Yvonne C       Email_address :: yjcnyc@aol.com

Story ::    Developed severe skin reaction to Azmacort inhaled steroid on both hands between thumb and first finger after several months on inhaler for asthma. Layers of skin actually peeled off for weeks. By process of elimination starting with Azmacort, this severe reaction to steroids stopped. Was also taking rhinocort nasal inhaler and have continued somewhat but because of nasal bleeding have reduced that use also. Asthma began from sinusitus disease that continues. Recent medical research confirms steroid problems of too much buildup for asthmatics. Will take a year to clear body of this product I've heard.

Name :: Nikki Crawford       Email_address :: Nikki10022@aol.com

Story ::    ENT doctor prescribed Cefuroxime antibiotic after 30 days on Itraconazole antifungal nebulized therapy for severe sinus infection. Sixth day of twice a day antibiotic nebulized treatment, I developed nausea and tachycardia and went to my local hospital ER. I vomited at the hospital and was immediately treated with oxygen and steroids. My heart beat returned to normal and my oxygen level increased close to 100 and I was released and went home. I was given a prescription for prednisone tablets and an antibiotic for 10 days. The next day my smell and taste returned which was gone for several years from pansinusitis. However, it was lost after ingesting a few ounces of white wine after a 7 week hiatus because I did not know until 6 months later that I had been exposed to mold and was now allergic to same. When I contacted my original ENT immediately after losing my smell and taste, he reinstated the cefuroxime in the nebulizer treatment method. On the second inhalatiion, I had tachycardia, my whole body turned red and I was ice cold. Since it was 4th of July weekend, I called his office and the doctor covering said to immediately discontinue the cefuroxime. I put on wool socks and heavy clothing and went to bed under blankets. After 5 hours in bed, I returned to normal. The covering doctor at the hospital said I was having a "life threatening reaction" to cefuroxime. You would think that the original ENT doctor who knew of my first ER admission and reaction would not have re-established this medication. He wanted to do surgery to remove nasal polyps and I don't think anyone should trust his judgment at this point. He is young but in the ENT department of a major teaching hospital in New York City. Several months prior my gp prescribed Zithromax for the same condition and I had tachycardia the first dose of 2 tablets for a five tablet dosage regimen. I was in the ER for the first time ever with this reaction and was tested for everything under the sun and all the labs came back negative as they did with the cefuroxime reaction. These reactions were reported to the FDA and the drug manufacturers. Don't want to see anyone else suffer or have worse reactions. For sinusitis treatment I would recommend sinus nebulizer if the patient is not allergic to some of the antibiotics that are used for sinus infections.

Name :: Jina Tollett       Email_address :: jinaytollett@hotmail.com

Story ::    I would like to introduce the first SJS case in Korean Medical History. The patient is a 9-year old boy and diagosed in Sept 2004. Currently he is only fed water through a nose hose and barely alive wanting to go to heaven. He asked his mother, "Mom, can I go to heaven now since I've been in pain so much?". I would like to know if there is any way that he can get help from your foundation.
Please let me know.

Name :: mrs.Monica Knipmeyer

Story ::    Hi, My name is Monica and I'm living in Hastings in England. I originally come from Korea and I am an ordinary housewife. I have read a story about a 9 years old Korean boy has SJS and the pain is unbarable that he would rather die. His illness is totally unknown in Korea and the fees for his treatment is 13000US dollers per month. I could not just forget the boy and I am begging you for help him. If your organization could help him in any way, like take him to USA and treat him for free or whatever you can think of, please do something for the little boy. He is living on just water only for more than 3 months by now and need a great help or a miracel very soon. God bless you all and thank you for your time.
yours truthfully
mrs. monica knipmeyer

Name :: Charlene Nichole Cooper       Email_address :: CharleneNCooper2004@yahoo.com

Story ::    Hi. My name is Charlene Cooper. I just found this today. I am here at my college in a computer lab and I was just typing in whatever into the search engine. I decided to type in Steven Johnson's syndrome and up pops this and three other websites on this "extremely rare" skin condition. I am shocked and amazed. When I had SJS in the hospital nobody told me or my family about this website, and that was just in June of this year. I was diagnosed with SJS at beginning of June. Weeks before I had taken prescription medicine Bactrim (I believe that was the name of it) tht contained sulfur in it for a UTI I was suffering from. I had the first dosage but it didn't make the UTI go away. So I went back and got more to make my UTI go away. Days after I had finished taking the second fill of my prescription I began to have flu-like symptoms and I couldn't sleep. I didn't feel like eating either. I went to my doctor a couple of days before I was admitted into the hospital. He was kind of calm about the whole situation I guesss because I didn't look that bad yet. He told me to stop taking my prescription. A day or two later I went back to my doctor and he referred me to the emergency room at a nearby hospital. I looked terrible then and I had a really high fever. He said that my dad should've taken me there (the hospital emergency room) in the first place. (I am really shocked that my grandmother, a registered nurse of about 40 years didn't say that herself). Anyway, I went to the hospital and hours later I was taken to another hospital where I had my 10-day hospital stay. It was the first time since I was a newborn that I had stayed overnight(s) at hospital before. At the hospital I was hydrated through IV and just looked over by doctors and nurses. I was given painkillers cause my throat and UTI among other things caused me great pain. I was also administered this liquid medicine for my tongue and throat. I was probably supposed to stay at the hospital for half a week longer but I missed my bed. So in abot 3 days I negotiated my early release from the hospital. I had a long recuperation at home, and I still have a lot of spots from my scars that taint my beautiful once perfectly clear skin. But I also have decided on a career and where I want to work. As a registered nurse at Long Beach Memorial Hospital in Long Beach, California. Thank you for reading my story.

Name :: Kim Smith

Story ::    I am submitting my story simply because I have heard repeatedly from doctors who treated me throughout my ailment and treatment of Stevens Johnson Syndrome, that this could not have been a result of birth control pills. However, that was all that was possible.

One day after taking a larger dose of a new birth control pill - prescribed by my family doctor to take to have a "morning after"effect, the symptoms began. Watery eyes began the first day, conjunctivitus and severe groin irritation the next, hives appearing the next, fever the next, cough and hospitalization the next.

I was then hospitalized for 13 days. Throughout the 13 days and after, I have been grilled by physicians on what medication could have caused this. I had not been sick at all before taking the birth control pill. Therefore, had not taken any over the counter medicine for at least one month preceding - maybe longer.

This has been reported to the FDA through myself and my physician. As stated earlier, I am simply writing to let others know to be careful when taking a larger dose of the birth control pill than usual (i.e. to have a "morning after" effect)

Name :: Jennifer

Story ::    My father died today.

He had CLL, he took Neulasta to increase his 'good' white blood cells, he complained of a mouth sores soon after receiving the injection.

He was given some antibiotics to help.

Within days he was in the hospital with a painful red rash. A few days ago he was diagnosed with Stevens Johnson Syndrome.

He was in great pain before he died. It was a horrific and painful to witness.

I am not sure if Neulasta (a new drug) was the culprit or the antibiotics.

The risks of Neulasta are reported as:http://www.kccop.org/consents/re0113c.htm

Very Likely: Fever, Loss of hair, Fluid retention, Nausea and/or vomiting, Diarrhea, Bone pain, Fatigue

Less Likely: Chest Pain, Headache,*Skin rash* (emphasis mine), Anorexia, Constipation, Sore throat, Heart arrhythmia or decrease in blood pressure

I have no way of knowing what caused the Stevens Johnson, but my dad began going down hill after the Neulasta injection combined with the antibiotics.

Name :: Kassi

Story ::    In March of 2003 I started taking Lamictal, which has a black-box warning for SJS. I was a good girl and did my research, and figured I was safe because I was 21 years old, not taking vaproic acid, and following the slowest ramp-up schedule imaginable. I was wrong. Two weeks at a half pill, I was ok. Two days at a whole 25mg pill, I was ok. Day three...I was alright until about 5 PM. Then I started to get a little itchy and felt kind of sick. Achey, apathetic, hot and cold...my doctor had told me to watch out for this kind of thing, so I took my temperature at that point. Two degrees higher than normal. Alright. Take a painkiller for the headache. An hour later the itching was UNBEARABLE, so I looked at it. My whole trunk was covered, witch splotches on my cheeks and arms, and my temp had gone up again. My eyes were getting red too, which was mainly freaky at that point. By 7 there was NO denying that there was a problem, so my friend took me to the emergency room. My temperature was 5 degrees raised, my blood pressure was elevated, et cetera, and they could actually watch the rash spread. Very scary. The scariest part was that the doctors didnt know what it was. We practically handed them a diagnosis on a platter ("I take lamictal. Lamictal has been known to cause SJS. See, its at the top of the PI sheet, which I have here. Here is a printout on SJS") and they still were quite hesitant to say it was caused by the medication, or to offer me any treatment for it. Fortunately I caught it early enough that it cleared up with antihistamines and withdrawal of the offending anticonvulsant.

Name :: Jerry Britton

Story ::    My son, as a child, had no issues with Motrin liquid.

A few months ago, now 7, he took Motrin in tablet form. The school called and said his one eye was swollen shut. We took him to the doctor and he was diagnosed (perhaps incorrectly) with conjunctivitis.

Two weeks ago we gave him Motrin chewables. Hours later he woke up and one eye was 90% shut, the other 70% shut, and his entire face was swollen. Since that was the only med he had been given, we were immediately suspicious. We went online and discovered the Motrin issues, which until then, we had absolutely no clue it could be so dangerous.

We called the doctor and they said to watch his symptoms and they would likely go away since it had only been one dose. Now we know not to use Motrin.

Name :: Natasha Smith-Beard       Email_address :: Natasha_SmithBeard@ColonialBank.com

Story ::    My son has Stevens-Johnson Syndrome, and we are lost, because my son is still being prescribed the same medications that cause this syndrome. We are afraid to call the doctor because they seem to deny this. The diagnosis was made at All Children's Hospital in St. Pete. He was originally admitted to University Community Hospital in Tampa, FL for dehydration and they began treating him with Motrin, 2 differrent antibiotics, and anti-viral medicaition because they thought the blisters were chicken poxs. We are lost and we just heard on our local news about the 7-year old that went blind from this and my son seems to be on the same path, because the docotr's prescribed bactrim to treat the burns and wounds on his eyes and body. We need help and direction. My son's name is Damian. He does not understand this and other children say he looks scary, he has been physically and emotionally damaged. We are living a nightmare.

Name :: Anissa Craig       Email_address :: anissa5@shaw.ca

Story ::    My 8 year old son Zachary was diagnosed with Stephens Johnson and toxic shock syndrom in June of 2004. He developed a high fever of 105 I treated the fever with motrin, with no results. After the high fever for over a day followed by vomiting, he began to develop red blisters as well as a severe sensitivty to light. He was admited into the intensive care for 6 days where his blood pressure dropped, developed an enlarged heart and liver. After being told by the doctors that he had Stephens Johnson I checked the web for more information on SJ I found out about motrin. I mentioned this to the doctors and they just said it was very unlikely and that it is mostly caused be antibiotics ...my son was not on any medication but the motrin. I just heard about the Johnson family sueing the makers of Motrin because their daughter was blind due to taking motrin and suffering Stephens Johnson. I don't know why I am writing to you about this other than I wanted you to know my story. I wish our medical system didn't look so lightly on such things. My son is now back to 100% with only far sightedness and a heart murmer. We are so lucky that there were no serious conditions. Our hearts go out to the many families that must suffer with their loved ones as they journey through this horrible disease.

Anissa Craig
Calgary, Alberta

Name :: Jan Stevens       Email_address :: jans0377@aol.com

Story::     Hi, My name is Jan Stevens and in late September of 2003, I started feeling flu like symptoms coming on. So I took some Motrin, like had done a million times before when sick in my 26 years of life. I went to bed that night feeling lousy, but hoping that I would feel better the next day. I woke up with my eyes feeling glued together by this puss and my mouth was on fire from these strange burnlike lesions and my lips were blistered. I had these strange sores on my chest and arms! I remember forcing my eyes open in my bathroom and seeing the blue in my eyes surrounded in what looked like blood.

I was taken to the emergency room by my father and I was immediately taken in. That was at Ayer Deaconess hospital in Ayer, MA. They didn't know what was wrong with me, so I was transferred to Beth Israel Hospital in Boston. They didn't know what was wrong either. All they knew was that my face was covered in burnlike lesions, along with my mouth, lips and eyes. Not to mention, the ones on my chest and arms. On my son's birthday on October, 2nd I almost past away, when they figured out what was going on. I was in an induced coma for 26 days treating my now severe pneumonia and SJS. When I woke up, I had no idea what had happened to me. I was told that I had SJS and the pneumonia and that I had a blod clot at one point and had been a miracle to wake up with my sight and no real serious scarring.

It was long road ahead me to back to health. I have made a full recovery as far as I know. I don't want that ever to strike me again. How do I prevent it? Can I prevent it? Over the past year I have heard more and more stories about this syndrome and am willing to whatever I can to help promote the future study of this awful syndrome that affects so few, but those who are it is very lethal in most cases. I was one of the lucky, so I feel obligated to help.

Thank you for your time.
Jan Stevens

Name :: Lindsey Adjutant       Email_address :: JoelzSweetStuff2@aol.com

Story ::    It was four years ago, 2000, when I started getting sick with a regular cold. So I went to the doctors and he said I had walking Namonia and prescribed to me Zythromax. I began taking it that day and when I woke up the next morning my face was very swollen. My mother took me to a different hospital and the doctor said I had the Herpes Simplex Virus. I still wasn't getting any better. So my mother took me to a different hospital in Laconia New Hampshire. The doctor there new exactly what I had she said it was called Stevens Johnson's Syndrome. I had these blister like lesions all over my body with a very high temperature. The doctor told my mother that I had to stay in the hospital for a little while. The whites of my eyes were black and so were my lips. The only thing I could drink was milkshakes. I still don't know how many I had. The doctor put an IV in so keep me from dehydrating even more then I was. Every few hours the nurses would have to change my cream and bandages on my lesions. Soon after they had to transfer me to Dartmouth Hitchcock Medical Center to check for another disease they thought I had called Kawasaki's Disease which was a condition of the Heart, but I didn't have it. I stayed in Dartmouth for one week and I was finally better enough to go home. I ended up missing 2 and a half weeks of school which seemed like a month. I was very lucky I didnt die everyone thought I would. As a result of the syndrome, I developed Asthma.

Name :: caroline

Story :: hi, five years ago my daughter-she was 16 yrs at the time-had a baby.two hours after comming home from the hospital she had a seisure for the first time in her life,we took her back to the hospital,the doctor prescribed tegretol and sent us home,about two weeks later she started complaining of feeling tired and a rash i took her to her ob-she was still under his care-he said it was alligies and prescribed benadryl and a blood test.two days later she was feeling worst could not even hold her baby,the rash got worst,i again took her to the dr,he told me she is highly alergic to something and changed the medicine to keflax ,i asked about the tegretol,he said it could not be that and to continue taking.a day later i took her to the emergincy room,while the nurse was taking her blood preasure it droped so low they started an iv.then everything went crazy,know one knew what was wrong with her all the blood tests were inconclusive, by then she was very sowllen form the iv,and had a fever of 106 nothing was working .one of the doctors that saw her was a skin doctor he said she had all the signs of SJS. after three days there the doctor told me they did all they can for my child and that her liver was failing and they were sending her to a liver transplant hospital-by helecopter-.

when she got there they took a lot of tests, but could not do a liver bio until her lungs were strong enough, by then she could not walk, her bed sheets were changed while she was in the bed.the doctors had to put a central line in, they told me her heart was enlarged a perscent of her liver was dead,her kiddney was swollen any her gall bladder was not working so the bile was comming out of her pores,she was yellow and the bed was yellow,every day was a nightmere.the doctors decided to try steriods after they did the liver bio and cat scan/mri ,they tried prednasone,and it worked, after two days on it she was able to walk with help, on the fifth day she was sent home to follow up care from a skin ,internal,and neurogical doctors.

when i got home i decided to contact the makers of tegretol,on talking to someone and telling them what happened .two weeks later i got a cheque for 7.00 the cost of tegretol, i sent it back i did not want that, i wanted them to put more info on prescription information and make doctors more aware. my daughter now has to be careful of any new medicines she might have to take ,some skin lotions or perfumes give her rashes,she then have to take a dose of prednizone. all of her skin did peel off down to her fingernails,she takes one day at a time.

it has been five years and i am still mad that no one knew what was wrong with her from the first sign of a rash.

thank you ----please excuse any bad spelling

Name :: rachel

Story :: A few years ago I was given medicine (influenza drug--rimantadine) to help shorten the time of my flu symptoms. I took the medicine (1/2 a days dose) at about 8pm and by 2 or 3 am I had pain in my bladder (as if my bladder was very full) and went the bathroom and when I wiped the area it was very swollen and very plainful. I had lots of blood and thought I started my menstrual. I had my husband check the area because of the pain and lots of swelling. He said that I was full of bleeding ulcers. I also began to have pain in my throat.

My husband took me to the Emergency Room and they said I was having a severe allergic reaction to the medicine. He described that I had a rare reaction that affects all the mucous membraines and internal organs. It produces bleeding ulcers and can cause internal bleeding in your organs. He said I was very fortunate to have only taken 1 pill! He said that if I would have taken a days dose or more that I may have been hospitalized for unknown time.

The treatment prescribed was a steriod shot and steriod prescription. I followed up the next day with my doctor and he had never seen this before, so he ran lots of tests to come to the same conclusion.