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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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ID: 100116 Time/Date: 11:37:50 AM PST/ 11-30-2010
Name: Zachary Hooper
Email Address: hooper3z@yahoo.com
Story: On October 15th my husband (Zach's step dad), daughter and I went to go watch Zachary play in his Varsity Football game. It was their homecoming and he had made the Sophomore court. Zach's team won, however Zach was not playing with his usual hustle.

We went home after the game and waited for Zach to check in before his usual trip with the team to go get wings. This Friday however, he came home and came straight to our bedroom complaining that he did not feel well. His eyes were very red, swollen and his cheeks were swollen. His nose was runny and he was congested. I immediately thought he was having an allergic reaction to something he ate and gave him some Benadryl. I asked him to list everything he ate and nothing was out of the ordinary. I told him to lay down and get some rest. At 6am the next morning I went to check on him and was amazed to see that his eyes were severly swollen and his mouth/lips were swollen, with blisters. I gave him more Benadryl still thinking it was a food allergy and went on-line to Google allergic reactions that would cause blisters in the mouth, scared that he had eaten something that might close his throat or impair his breathing.

SJS was actually one of the results that came back, however I only skimmed the information, thinking it was too severe for what was actually happening. I walked away from the computer and decided to call the emergency care at his pediatrician.

By 9am we were being seen by his pediatrician, by this time a severe rash had broken out all over his chest and his back. His eyes, mouth and congestion were progressively getting worse. His pediatrician was very uncomfortable with the symptoms and called the hospital for admission. Luckily, the hospital was across the street, so I immediately took Zach to the emergency room. By this time, literally within minutes, his temperature went from 98 degrees to 103 degrees. From this moment on life as we knew it changed forever.

Doctor after doctor came into the emergency room to look at him and they all said the same thing. I would repeat verbatim what had happened and the fact that he had been taking an anti-inflamatory for his back. And each doctor would say the same thing...wow the reaction is "remarkable", his eyes are "unbelievable", the reaction in his mouth is "impressive" - and what I realized is that none of these doctors knew what was happening to Zach. The hospital had no Opthamologist on weekend call or Infectious Disease Doctor on weekend call so we were transferred to St Josephs. Zach was immediately admitted and the saga started all over...verbatim I would describe what happened and again the doctors were in awe of the severity and rapid deterioration occurring right in front of our eyes. Several tests were ordered, xrays of his chest revealed pnuemonia in his lungs, the rash was now hundreds of small blisters and his breathing became seriously challenging, his fever would not budge from 103. But nothing was really happening in way of treatment and my fear was increasing with every minute. I finally snapped and demanded someone do something - tell me something!!!

The Doctor reached out to the ICU doctor on duty who had alot of experience in the burn unit at Tampa General. To this day she is an angel to me - it was the manner in which she took charge. Within minutes she had nurses getting IVs, taking more cultures from his eyes, ears, bisters, ordering more tests, putting him on oxygen. She moved Zach to ICU, ordered anitbiotic ivs in case it was bacterial and told me that this was SJS/TEN. She explained the reaction could go either way, she had seen several cases and the rate at which he was reacting suggested his case could be very severe.

For the next 4 days I sat next to Zach as his body fought with everything he had. Me, his stepfather, his father, brothers, sisters, grandmas, grandpas, aunts uncles, cousins, coaches, friends prayed and prayed for the reaction to subside, to slow down, but everyday looked worse. The blisters got bigger and spread all over his body, legs, bottom of feet, face, arms, etc. Everything on him seemed to be losing the battle, his throat, his mouth and lips were in so much pain.

Then day 5 came and the doctors decided to move him to Tampa General ICU burn unit. They wrapped him in medicated guaze from head to toe and soaked him in water every 3 hours. His eyes were medicated every 2 hours and we were desperately trying to get him to eat protein shakes 4 times a day. Little by little the reaction seemed to subside and the supportive care began to take effect. He began to breath on his own, he began to drink the shakes, he was able to eat small amounts of food, he could open his eyes ever so slightly, etc. Little by little, day by day, he started to win.

Zach spent 17 days in ICU. It was determined that the non-steroid anti-inflammatory and ibuprofen were the culprits of his ADR. He is still struggling to get his eyes back to normal, however the prognosis looks good. He is still struggling to get his skin to improve daily. He has lost all his nails. He has only been out of the hospital 3 weeks, but he is doing much better. He smiles, he eats, he plays xbox, he enjoys his friends visiting and I see him gaining his life back. He has a long journey ahead to be back to "normal" - or maybe he will never be exactly the same - who knows. But I thank God that Zachary is home, that he is ok, that he fought this fight with everything in his body and that he won. His is a blessing. If you are in the midst of your experience - stay strong. Stand for 100% recovery and I will too.

Sincerely,

Natasha Francis (Zach's mom)
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ID: 100115 Time/Date: 08:53:57 PM PST/ 11-22-2010
Name: Heather Thamann
Email Address: EmailAddress@notprovided.com
Story: My husband had a Boil removed from underneath his arm on a thursday-they prescribed Bactrim for the infection. By monday he was shaking uncontrollably and sweating and having chest pains. I took him to the E.R thinking he had an infection in his blood or was having a heart attack. On wednesday he had a follow up visit for his arm and his symptoms had worsened. He now had a fever of 102 and shaking worse and seemed to be turning red. That particular Dr. dismissed ALL Symptoms because the blood work and all the other tests from the emergancy room were negative or clear. He sent him home with another antibiotic (Clinamyacin)-along with the Bactrim. Friday morning he was sweating so much it looked like he had just gotten out of the shower or pool-as he had looked all week- with the other symptoms worsening-- bed ridden all week. He took his shirt off to change it and he had welts and rash all over his upper body-from neck to waistline and his throat hurt. He went to the Dr. and the Dr called me from his call phone and told me to come and get thima and take him to the emergency room! NOW! It took them 6 hours and they still couldnt figure it out-- as he was lying there- he was swelling and turning purplish red, his face was swelling, dying of thirst and soars in his throat and mouth and lips--he got a room- he was on saline drip and pain meds to stop him from shaking- then next morning a dr. from the practice came in and said "you have what we believe is Stevens-johnsons Syndrome. I am prescribing you some steroids and you can go home and be miserable there" then left the room. His nurse came in and said that she didnt want him to go home. his white blood cell count was off not too high or too low- right in the middle and it worried her- the purply redness had not subsided and he still had a high fever. we stayed and she researched it all night and came into work the next morning and told us all about this syndrome. We were devastated that noone had told us anything about it and dismissed it as no big deal! Had the nurse not said to stay- it could have gotten worse. I know now that his case was very mild, but the thought of it possibly being worse scares us. My husband has only been sick a few times in his life and is a very active and healthy 37 year old. And I now am making him wear and ID bracelet so he doesn't get any of the antibiotics that he is not allowed to take.
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ID: 100114 Time/Date: 11:52:36 PM PST/ 11-08-2010
Name: Veronica zenkner
Email Address: Vzenkner@gmail.com
Story: My name is veronica.I had SJS back in 2003 when I was just 13.I was taking motrin and the next morning I broke out in a rash.it started on the back of my neck and for the next couple days began to spread down my back.I went to the community hospital with 103 fever and although my parents begged them to admit me, they said it wasn't that serious and sent me home.that night was terrible.I couldn't sleep I felt so hot.in the morning we went to my doctors office and right away they admitted me to the nearest hospital.by this time the blisters had spread all the way down my back shoulders chest and face.that night I slept with cold wash cloths on my skin to help the burning sensation.two days atthat hospital and doctors still didn't know what was wrong.all they knew was whatever was happening was getting worse.they transferred me to loyola hospital in west chicago where the last thing I remember was being rushed into the E.R.transferred to a shower bed.clothes cut off and nurses vigorously scrubbing my skin.I woke up to what I thought was the next day.it was actually one week later.I was in a coma.wrapped in a sort of silvery paper to keep moisture on my skin.my dad later told me I was given several blood transfusions and staff performed CPR on me more than once.I began to cry.my hair was shaved off and when I looked in the mirror I lost it.scabs all over my face ears lips shoulders chest.sores in my mouth and under my eyelids.I had a feeding tube because the pain of eating was terrible.two weeks later I was released.the physical pain died down but the emotional pain began.I was entering eighth grade and lost alot of friends because they didn't see me as the same person.I was bullied and made fun of more than I can count.seven years later still having a tough time.I often cry because I want to look "normal".I have scars on my face which people often mistake as bruises.but by far the worst is my eyes.slight blindness in my left eye.it droops down and leaves me with a wrinkly eyelid.I have good vision in my right eye which I am so thankful for.both eyes get so red and irritated it bugs me.people often think I am under the influence of drugs.I can't wear makeup because I'm always rubbing my eyes.it hurts deep down to look in the mirror.I hate what I see.I fear I will be blind.I used to see doctors about my eyes but now that I no longer have insurance its tough to pay those kind of bills.I try to stay positive about this but I often am overcome with tears.this is a very terrible condition and my heart goes out to all of you.to think a terrible thing has happened because of one little pill.pray for me as I will do for you
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ID: 100113 Time/Date: 11:50:34 PM PST/ 11-08-2010
Name: Veronica zenkner
Email Address: Vzenkner@gmail.com
Story: My name is veronica.I had SJS back in 2003 when I was just 13.I was taking motrin and the next morning I broke out in a rash.it started on the back of my neck and for the next couple days began to spread down my back.I went to the community hospital with 103 fever and although my parents begged them to admit me, they said it wasn't that serious and sent me home.that night was terrible.I couldn't sleep I felt so hot.in the morning we went to my doctors office and right away they admitted me to the nearest hospital.by this time the blisters had spread all the way down my back shoulders chest and face.that night I slept with cold wash cloths on my skin to help the burning sensation.two days atthat hospital and doctors still didn't know what was wrong.all they knew was whatever was happening was getting worse.they transferred me to loyola hospital in west chicago where the last thing I remember was being rushed into the E.R.transferred to a shower bed.clothes cut off and nurses vigorously scrubbing my skin.I woke up to what I thought was the next day.it was actually one week later.I was in a coma.wrapped in a sort of silvery paper to keep moisture on my skin.my dad later told me I was given several blood transfusions and staff performed CPR on me more than once.I began to cry.my hair was shaved off and when I looked in the mirror I lost it.scabs all over my face ears lips shoulders chest.sores in my mouth and under my eyelids.I had a feeding tube because the pain of eating was terrible.two weeks later I was released.the physical pain died down but the emotional pain began.I was entering eighth grade and lost alot of friends because they didn't see me as the same person.I was bullied and made fun of more than I can count.seven years later still having a tough time.I often cry because I want to look "normal".I have scars on my face which people often mistake as bruises.but by far the worst is my eyes.slight blindness in my left eye.it droops down and leaves me with a wrinkly eyelid.I have good vision in my right eye which I am so thankful for.both eyes get so red and irritated it bugs me.people often think I am under the influence of drugs.I can't wear makeup because I'm always rubbing my eyes.it hurts deep down to look in the mirror.I hate what I see.I fear I will be blind.I used to see doctors about my eyes but now that I no longer have insurance its tough to pay those kind of bills.I try to stay positive about this but I often am overcome with tears.this is a very terrible condition and my heart goes out to all of you.to think a terrible thing has happened because of one little pill.pray for me as I will do for you
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ID: 100112 Time/Date: 01:17:26 PM PDT/ 10-29-2010
Name: peter barfield
Email Address: pearlbarfield@yahoo.co.uk
Story: hi i had sjs aged 19 i am now 63 years old and i can still recall the pain i suffered i was in hospital for many weeks befor they knew what was wrong with me i was the first in the hospitals history with sjs the hospital is in birmingham in the uk. at the time i just wanted to die so the pain would go away im glad i did not i just hope the treatment has improved they put tinctre of violet on my skinless mouth and lips they then spent days trying to remove it but i will always be greatful to the nurses that looked after me
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