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ID: 100126 Time/Date: 06:06:58 PM PST/ 01-24-2011
Name: Linda Michaello
Email Address: lindalo19510@yahoo.com
Story: I am contacting you on behalf of a lady I met, she has been diagniosed with SJS. She need an advocate, she has tried several times to get social security disability but has been denied, she is indigent, she has no assets. Please have someone contact her It my understandingthat this condition maybe life threatening, because her feet have been effected and her legs are numb, she cannot feel sensation. PLEASE HELP HER. SHE NEEDS HELP RIGHT AWAY, perhap her nerves are shutting down.
Her condition made new headlines in September 2006, Janice St. James interviewed her regarding taking a pill lamacell, or something like that.

Willa Robinson 972-5722829

Thank You
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ID: 100125 Time/Date: 05:24:33 AM PST/ 01-16-2011
Name: John C
Email Address: EmailAddress@notprovided.com
Story: Took Zithromycin (ZPack) in July 2002.
Took Zithromycin (ZPack) in Oct 2002 and got TENS

Treated at the burn unit in the Brooke Army Medical Center in San Antonio, TX, USA for 3 weeks. Started on Alrex drops, flax seed oil, and doxycycline

Treated by Dr. Scheffer Tseng in Miami, FL, USA around 2004 (to include surgical procedures).

Approximately 2005/2006 nearly lost right eye due to a corneal ulcer that nearly perforated. Doctor prescribed bandage contact lenses. I still wear them to this day.

Around this time the doctor also put me on Restasis. I proved to be sensitive to the vehicle that it used (the same vehicle as in Refresh Endura drops) - so I had cyclosporine compounded for me at Leiter's Pharmacy in San Francisco, CA, USA with a different vehicle.

I also use autologous blood serum eye drops (saline and blood serum mixed). I learned the procedure for making them from Dr. Tseng, but make them myself. I currently only use them when I'm experiencing severe eye issues.

I have had relatively few eye problems since I started wearing bandage contact lenses. This is against the advice of the doctors, but the healthy appearance of my corneas tends to support my use.

Currently my cornea specialist is weaning me from the steroid drops (due to a spike in my intraocular pressure) and has referred me for the Boston Scleral lens. Due to issues with the pressure spike and sensitivity to the anti-pressure drugs I have some serious vision problems that I hope will resolve in the near future.
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ID: 100124 Time/Date: 11:02:21 AM PST/ 01-11-2011
Name: F. Danback
Email Address: fdanback@gmail.com
Story: On October 6, 2010 my 6 year old son woke up with mouth pain. His mouth appeared to be covered with small white blisters that were pervasive and covered his entire mouth and throat. He visited his pediatrician and was referred to the hospital emergency room. The ER doctor inspected him and based entirely on the mouth lesions she correctly diagnosed him with SJS/Erythema Multiforme Major. I asked her what to expect and she said that he should be admitted and we will have to track the progression of the illness and keep him well hydrated but that she never managed a case of SJS before. Of course by this point I already Googled SJS and my heart was pounding with great fear. (Sidebar: This is a major hospital in Westchester County, NY so it is important to understand that this hospital serves a geographic area that has many millions of potential patients). My son was admitted and was put on IV fluids. He started to develop target like lesions on his face and his lips became swollen. 1 day later the hospital discharged him and said he would be fine and to just check back in with his pediatrician. This was on a Thursday. Saturday Morning (2 days later) he woke up with severe swelling of his lips and eyes and lesions began to appear across his face and arms. It was at that point I made the decision that he needed to go to a hospital that understood SJS. I drove 40 miles from my home to Yale University Childrens Hospital. This was the smartest decision I could have possibly made and it is what I recommend to anyone suffering this illness - get the right expertise as early as possible). Over the next two weeks the illness got progressivley worse and my son was not able to ingest food orally. We needed to put him on a PICC line. The bad news was that the anesthesiology team would not put him under to do the procedure because they thought he might throw-up while under anesthesia and aspirate. My 6 year old son had to have the line installed without anesthesia. I nearly had a heart attack watching this but he was a tough little guy and did it. Finally he was on oral nutrition! I was thrilled. His eyes were sealed shut from the swelling and conjunctivitis, his mouth and lips were bleeding, new lesions were appearing daily and I just did not know when this was going to plateau or if it might even become TENS.... I spent 20 nights in the hospital with him by his side while no less than 20 doctors (it is a University Hospital) in teams broken down by area of expertise who each visited him daily. We had Dermatology for the skin, we had Infectious Diseases, we had Hematology, we had Opthamology and then we had the Attending hospitalists and their teams of interns.

The illness plateaued at about the 17th day and it appeared as though there were no more new lesions. Finally, I could sleep again. What happened next was not expected. All of the sudden my son started getting high fevers. The attending drew blood and confirmed that he had contracted methicillin-sensitive staphlyococcus aureas bacteremia. Staph infection. Worse yet, we think it was possible that a penicillin based antibiotic was the catalyst for the SJS so we had to fight it with the heavy-duty drug Vancomycin. 5 Days into Vanco treatment and the MSSA appeared to be under control - many bad nights of scary 103-104.1 fevers before we put this in check. For the next 6 weeks I had to administer Vancomycin using a home-use bubble into his PICC line. Mind you this was his second PICC that he received after the MSSA cleared up because we surmised the first PICC caused the MSSA. During an ultrasound check of the placing of the second PICC we got more bad news. Two blood clots, large blood clots. One was near his heart, at the end of the PICC line and another in his arm. The result? Lovenox injections twice a day for 6 months!! This poor little guy gets two shots a day (and he is handling it like a champ). He has been out of the hospital since just before Thanksgiving 2010 and he is strong again. No more MSSA, no more lesions, no more SJS and the blood clots are being treated with the Lovenox. He goes back for a three month exam in February. We are praying the clots are gone so we can take him off the blood thinner. This was a horrible experience for us but there were lots of lessons learned. 1. Avoid giving your kids medication if they do not absolutely need them. 2. If they do have symptoms you must be in charge of their healthcare. Doctors can be arrogant and dismissive. Take charge and push the envelope. Be respectful but also do not take what they say without being personally convinced they know what they are talking about. 3. Track down the expert and if you have to travel to get to the right hospital then do it, this is your family and you need to protect them! 4. Be careful of the doctor looking for a paper to be published. There was one doctor that suggested maybe going with IVIG but the research showed that this should be a last case treatment for this illness. The possible side effects are scary. We opted not to do this and it worked out ok. 5. Be strong but by all means get support from your friends and family. I cannot tell you how many nights I cried myself to sleep as I stroked his hair in the hospital bed just praying for him to get better. You need to get away from the hospital room and give yourself a mental break or you will break yourself and your family cannot have that happen, not now.

The story of my son is probably not unlike many stories here. This is the first time I am writing about it and I only wish I could help someone going through this illness to impart what I have learned along the way.

Good luck to you,
Fred
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ID: 100123 Time/Date: 09:33:57 AM PST/ 01-03-2011
Name: Belinda Palmer
Email Address: palmersfour@gmail.com
Story: Austin's Story
My 7 yr old son Austin was being treated for ADHD. We had tried several medications that just didn't work. His Dr. suggested we try Lamictal to control some of his issues. She told us the drug worked for a lot of kids with his problems. She also told us that SJS was a side effect. (Thank God) Being made aware of this saved my son's life. I knew that there was possible to develop SJS, but that it was a "small possibility". After taking the medication for 1 month, we saw great improvements in him. It was the only drug that had ever worked for him. We were thrilled. However, the Dr. said the dosage needed to be increased a little. So, that is what we did. Within 2 days of increasing the medication, Austin RAPIDLY developed bumps on the palms of his hands, his arms and chest...like chicken pox. His eyes began turning red. On the onset, I thought chicken pox, but he had already had the vaccine so it couldn't be that. Within 4 hours his eyes were swelling and the bumps had turned into horrible looking spots like burns. I immediately took him to the hospital as his Dr. warned me not to wait if I even thought it was SJS. Which I was sure it was. After hours in the ER, the Dr came in long enough to let me tell him I thought it was SJS and for him to tell me to get a grip on myself and take my kid home and give him an oatmeal bath, eyedrops and the LAMICTAL. I was dismissed as an over protective mother who's child had chicken pox and pink eye. I left the hospital very frustrated and scared. By the next morning, my son looked terrible. The spots were getting worse. He didn't want to open his eyes, eat, drink or even talk. Just lay still to keep the pain down. I called the pediatrician and took him in. Again, I was told pink eye and chicken pox. I brought up the SJS and was told this was not SJS. "Take him home and give him meds.
Being his mom, I knew this was wrong. I did not give him the lamictal. I did give him the eyedrops. By the following day, he looked terrible. I was taking him back to the pediatrician even if they didn't want to see him. On the way, the inside of his mouth began to swell like he had a jaw breaker in his jaw. I knew this was the start of the end. I pulled into the nearest ER, told them my son had SJS and I wasn't leaving until somebody helped him. I knew what he had, was anybody going to listen. This time, I found a nurse who had seen SJS. She pulled me to the side and told me that no matter what they said, to keep my child in the hospital or he would die. She was the only person who had ever seen SJS that I had come in contact with and she was telling me my son may die. Thank God again. Somebody knew and listened this time. The Dr. had no idea, but he knew who did. He called Arnold Palmer Childrens Hospital to get their input. Another Thank God moment. Arnold Palmer sent their people to transport my son to Orlando. For the next 2 weeks we lived in ICU. IV's, feeding tubes and cathaters. It was the worst and best days of my life. He was alive and getting the best care possible. Then he was moved into a regular room. Because of his emotional issues, he wouldn't let anyone to touch him. The wonderful dr's and nurses taught me how to care for him. Each morning, when he would wake his eyes and mouth would be fused together. I would spend my mornings removing the dead burned skin while he bravely layed there crying behind eyes he was unable to open, lips he couldn't move. He was a trooper.
Finally, healing began and he could eat. However, he wouldn't. He was so afraid of the pain. The feeding tube would remain until he would eat on his own. Nothing enticed him. Finally, he ate his entire lunch. That was when we could go home. For the next year, my son was homebound. Mostly due to the trama it caused him emotionally. He tried to return to school. It was devastating. Kids were mean, teachers were not kind to his emotional state. His Dr. said it would be better for him to be taught at home until he could physically and emotionally heal.
Today, he is a healthy 11 year old. We see some signs of the SJS. He has the scars, there is light sensativity, and frequent nose bleeds and a little dry eyes. But, he is here. Thank God, and a select group of nurses and doctors. And a mothers intuition.

Just to let you know, I contacted that ER Dr. who treated me so badly. At first he didn't want to talk to me. So, I told him he had a choice, he could discuss it with me, or my lawyers. (I had no lawyers.) I reminded him of how he treated me then told him the story. I don't think he will ever again treat a mother the way he treated me. Nor do I think he will ever forget SJS.
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ID: 100122 Time/Date: 05:38:39 AM PST/ 01-02-2010
Name: Mervin Waldapfel
Email Address: EmailAddress@notprovided.com
Story: Hi there , my story happened in 1979 i was 18 at the time , roughly around january time . at first i thought i was getting a cold or flu so i bought an "over the counter " medicine ( Contac 400 ) , at first i felt better then the next day i felt rough again so i took another in the morning , by the time it got to around 4pm ish i felt Really Bad , my grandmother took one look at me ( i was staying there for the weekend ) called my mother and rushed me to the doc's in town i remember seeing him very soon after getting there , and him calling his partner in to see me , very soon after that i was in hospital , now this is where memory starts to get very hazy, i Do remember feeling Awful and that there was thousands of ants crawling around under my skin !!! It was painful for me to breathe let alone swallow anything . i had fluid filled blisters all over my body, about the size of a fifty pence coin, Fortunately i was never allowed to see what/ how i looked ,i was starting to get dehydrated so i was on an IV drip for a while , also i remember the nurses putting ointment on me ,which was a whitish colour then it was changed to a different one which was a dark brown colour and smelled awful ( a bit like coal tar ) this went on for what seemed weeks but i am not sure , i do remember it was extremely painful ,after a while the medical staff were concered about my ability to swallow , so i was required to drink water in great quantities ( i hate water ) so i was given a drink of eggs, vanilla flavouring and milk, which helped somewhat. I started to get better after around week 4 of my stay in hospital and was told that as long as i continued to improve i could be released , after 8 weeks i was released and continued to improve to full health .
i have since learned after talking to my mum about the incident that she had been told that i was very close to dying from the SJS and that it had been "touch and go" for several days and that she was told to expect the worse ( poor mum though she never told me ) i contiued to improve and i find myself incredibly fortunate that i have not had a repeat episode or that i have been affected in anway at all, i learned years later that i had the classic symptoms of SJS ( conjunctivitis , urethra-itis, ulcers and swelling of all the mucus membranes throughout my body(lungs ,digestive tract,mouth and nasal passages)blisters that caused scarring that lasted for years , but have now faded , as i say some of the events have got a bit confused due to how i felt at the time and also time has done it bit aswell (30 years ago ), i hope some of you find relief and hope in my story as i was returned to life untouched by SJS but for a bit of minor scarring of my skin ,.
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ID: 100121 Time/Date: 07:38:01 AM PST/ 12-31-2010
Name: Nevaeh Shane Kolebaba
Email Address: Heaven07@sasktel.net
Story: My daughter Nevaeh was just diagnosed with SJS a few days ago and is having the fight of her life.Her mother and I feel broken and delerious at times,can't imagine how she feels.My girl is almost 4 years old and knows pain that others couldn't imagine .Kids are stronger in ways that adults could never be.Her spirits are still bright and melt your heart.
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ID: 100120 Time/Date: 08:34:40 AM PST/ 12-21-2010
Name: Dianne Cline
Email Address: EmailAddress@notprovided.com
Story: My mom died due to Stephen Jones Syndrome and now boyfriend has it to, why can't they do test and find out what medication is causing this. This is one crazy syndrome how many people do I have to lose in order for a cure to be found.
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ID: 100119 Time/Date: 12:39:55 AM PST/ 12-20-2010
Name: LADONAUGH HALL
Email Address: EmailAddress@notprovided.com
Story: I AM A 20 YEAR OLD FEMALE AND I HAVE BEEN SUFFERING WITH SJS FOR 2 YEARS NOW. 2008 WAS THE FIRST TIME THE REACTIONS STARTED TO OCCUR MILDLY, IT WASNT UNTIL JULY OF 2010 WHEN THE SYMPTOMS BECAME SEVERE ENOUGH FOR HOSPITAL TREAMENT. OCTOBER 2010 I WAS SENT TO THE HOSPITAL AGAIN UNABLE TO SLEEP DRINK AND EAT THATS WHEN THE DOCTORS FINALLY TOOK A BIOPSY OF THE LESIONS AND CAME TO THE FINAL CONCLUSION THAT I HAD STEVEN JOHNSON SYNDROME. IM SCARED AT TIMES NOW BECAUSE I DONT KNOW WHEN THEY WILL REAPPEAR AND HOW LONG THEY WILL LAST AND HOW WORSE THEY WILL GET, BECAUSE ONE THING IVE NOTICED IS WITH EVERY REACTION SEQUENCE I GET A BIGGER SPREAD OF BLISTERS INTERNAL AND EXTERNAL.
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ID: 100118 Time/Date: 10:53:58 AM PST/ 12-13-2010
Name: Tabitha
Email Address: lillium_21@yahoo.com
Story: Two weeks after I had my twenty first birthday my mom told me she had a bad case of the flu and was having my Grandmother drive her to the ER so she could get looked at. I didn't think anything of it, I mean my mom was 41 in good health, and loved life, in short she was my mom. So I told my Grandmother to keep me updated and went to bed. I found out later that night that one of the ER techs had given her something with sulfa in it, I didn't know it at the time but my mom is allergic to sulfa, but the tech didn't even ask about her allergies and gave it to her anyway.

Feeling alittle better, my mom went home to take a bath, and thats when I got the worst call of my life. My Grandmother called me screaming that my mom's skin was breaking out in horrible blisters like she had be burned, and she was really out of it. She told me that she was taking her to the hospital again, an hour after the had gotten home. At the ER again, this time there was no way I was going to sit at home, the ER staff gave her a slew of meds and diagnosed her more times then I could count, everything from a scolding to bug bites. We yelled at the techs because we knew it wasn't just 'bug bites' or that the water had been too hot in her tub, something was very wrong here. About the time my mom's skin started to peel off on her forearm was when we told them we wanted a second opinion, and another hospital.

My sisters and I called around and we found a hospital not far from us in St. Louis, St. John's mercy. One of the doctors there said he had heard of patients with her symptoms and thought he knew how he could treat her. So we had my mom transferred to the burn unit at SJM later that day.

All I remember from the rest of that day was sitting in alittle waiting room outside the burn unit, crying so hard that my shirt was drenched and cluching my sister Lacey's hand listening to the screams of our mother as the did burn care on her. We didn't get to see her till the next afternoon. The doctor told us that he had to put her in a chemical induced coma because she was in so much pain. Seeing my once vibrant mother with all those tubes and wire coming out of her broke my heart.

She was in the coma for 3 months. In which time my sisters and I kept constant seats in the waiting room. Toward the end, the doctors and nurses told us not to hold out much hope, even for us to make funeral plans, but my sisters and I never gave in. We sat by here bed, read to her, sang songs that reminded us of her, and made tapes to play for her that had her favorite Journey songs on it. Through it all we silently prayed for her to wake up and just be our mom again.

While we waited in that little hospital waiting area, lots of things happened that should have made us happy, but they just made us feel worse knowing my mom would miss them; My nephew learned to crawl, My neice said her first sentence, the whole family even the people from Iowa came in to see her. All the while we prayed and waited for a miracle.

That last week was the hardest. The doctors told us that her scalp was the last part of her that had sloughed and now her hair was just a matted lump. My mom had the most beautiful bleach blond hair any girl could ask for. Natural and full of curls stretching down to the middle of her back. My sister Lacey refused to let them cut it off, so she tried to wash and brush it for her. In the end it was no use, they chopped it anyway.

When my mom finally opened her eyes and was aware of her surroundings she couldn't see very much. because of the SJS she had lost 90 percent of her sight, something that couldn't be helped and that she still struggles with today.

Even though she is now scared on 98 percent of her body and her eyesight is gone, she is alive. The best thing I have ever seen was 17 months ago when my mom first held my newborn daughter. I cried thinking that only 2 years before that we didn't know if she would even breath on her own again, let alone hold a baby. I will never forget the doctors who saved my mom's life. If it weren't for them my mom would have died without even knowing what she had. Thank you so much!
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ID: 100117 Time/Date: 08:56:19 PM PST/ 12-01-2010
Name: MALISSA MANLEY
Email Address: EmailAddress@notprovided.com
Story: I BECAME ILL AFTER A STINT IN REHAB. THE FIRST SIGN WERE I HAD A HORRIFIC HEADACHE THAT WOULD NOT GO AWAY. THE FIRST MORNING I WOKE UP I THOUGHT I HAD THE MEASELS ,THEN AS THE DAY WORE ON MORE RED SPOTS APPEARED,THE SECOND DAY MY ENTIRE BODY WAS COVERED IN RED SPOTS AND MY HANDS AND FEET WERE BRIGHT RED! THE SPOTS CONTINUED TO BLANKET MY ENTIRE BODY. I WAS BECOMING FRIGHTENED AND STOPPED TAKING THE NEW MEDICINE ;MY DOCTOR LATER WOULD TELL ME THAT WAS WHAT SAVED MY LIFE,ALTHOUGH FOR WEEKS THEY KEPT TELLING MY MOTHER TO GET OUR PASTOR AND FAMILY MEMBERS TOGETHER BACAUSE I WAS NOT GOING TO MAKE IT THROUGH THE NIGHT. BACK TOO.. THE THIRD DAY I COULDNT WALK OR HOLD ANYTHING AND IT FELT LIKE MY WHOLE BODY WAS ON FIRE THE RED DOTS WERE EVERYWHERE!! I CRAWLED TO MY FRIENDS ROOM AND WOKE HER UP AND SAID I NEED TO GO TO THE ER NOW! WHEN I GOT THERE ALL THE NURSES JUST STARED IN HORROR!! I WASNT THERE FOR FIVE NINUTES AND THE DOCTOR CAME IN AND SWIFTLY SAID "WE NEED TO SEND YOU TO -------- RIGHT NOW! IM VERY SORRY BUT YOU HAVE SJS! AND THEN WITH A LOOK HE SAID AND I WILL PRAY FOR YOU ,I HOPE YOU ARE STRONG ,BECAUSE YOUR GOING TO NEED ALL THE STRENGHTH YOU CAN IMAGINE!! AND WAS HE EVER SO RIGHT.THE NEXT TWO MOMTHS WERE A LIVING HELL!!!!!! 97% OF MY BODY FROM THE INSIDE /OUT WAS BURNED!! FROM THE TIP OF MY HEAD TO THE TIPS OF MY TOES!! APART FROM MY BUTT AND UNDERARMS!! I WAS WRAPPED IN GAUZE FROM MY NECK DOWN BOTH MY LEGS!! EVERYDAY I WAS TAKEN IN -THE TORTURE CHAMBER- THE GAUZE WAS RIPPED OFF AND I WAS WASHED. I WILL NEVER FORGET THE PAIN!!!!!! AND THEN THEY HAD TO PUT A JELLYLIKE FLUID ON MY EYES 3OR4 TIMES A DAY !!!! AND THE INSIDE OF MY MOUTH AND THROUT WERE BURNED. I HAD A TUBE IN MY NOSE AND MOUTH AND A CATHETER!! I LOST OVER HALF MY HAIR AND MY TOENAILS AND FINGERNAILS FELL OFF FIVE OR SIX TIMES!! AND IF YOU CAN IMAGINE MY ENTIRE BODY WAS COVERED IN THESE HUGE LIQUID FILLED BUBBLES!!! ON A SCALE OF 1-10 MY PAIN WAS CLOSE TO 1000!!!! THE DOCTOR WOULD TELL ME NOT TO GO OUT INTO DIRECT SUNLIGHT FOR AT LEAST TWO YEARS AND I MA NOW ALMOST DEAF AND BLIND!! THIS I A HORRIBLE THING THAT I WOULD NOT WANT ANYONE TO SUFFER!!!! BUT I THINK GOD THAT I AM ALIVE!! I HAVE LAWYERS WORKING TO GET COMPENSATION, THEY TELL ME IT COULD TAKE UP TO 7 YEARS!! THE HOSPITAL I WAS IN TOOK ALOT OF PICTURES AND DOCUMENTED EVERYTHING AND ASKED FOR MY PERMITION TO USE ME AS A CASE STUDY. THEY SAID SJS IS SO RARE AND ALMOST ALWAYS FATAL!!!! I LOOKED IT UP AND ONLY 300 CASES ARE REPORTED IN AMERICA EVERY YEAR!! DO I FEEL LUCKY TO BE ALIVE.YES!!! BUT I DONT FEEL LUCKY TO HAVE BEEN WHERE I HAVE .
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