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ID: 100134 Time/Date: 02:52:11 PM PDT/ 04-04-2011
Name: Judy Lewis
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Story: My brother died March 30, 2011, from SJS/TEN. He went in to the hospital on January 30, 2011 and was there until he passed away. He was 63. He had been given allopurinol for a gout diagnosis. He began to have flu-like symptoms and then to have the skin problems so prevalent to SJS/TEN. He lost all the skin on his body. He had surgery on his eyes, he had a ventilator, he had a dialysis machine, he had surgery to remove dead parts of his intestine. He had days where he was really sedated as the pain would be too great. It was a roller coaster ride, he would have some good days where he was awakened and with the help of the respiratory therapist could talk a little to his family. That is when everyone had high hopes. Then he would crash and be much worse. He developed jaundice as his liver was not functioning well, his kidneys were gone. He had lost 75 pounds and was so weak he could not lift his hand. He had continual internal bleeding and received blood and platelets daily. On Tuesday, March 29, the doctors did surgery to find the source of the bleeding and discovered that his internal organs had died. There was no longer any hope for survival. The dialysis machine was turned off, he was taked off most IVs but the ventilator was left on as he struggled so to breathe, he was heavily sedated. He passed away the morning of March 30, 2011. This is the most horrific disease for any human being to be diagnosed with. To survive is a miracle, we needed one more miracle.
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ID: 100133 Time/Date: 11:12:02 AM PDT/ 03-18-2011
Name: Shernie Wilkes
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Story: This is an update to my original posting in July/August 2008.
I spent 23 agonizing days in my local hospital, and endured many months of therapy and recovery. I would not wish that experience on my worst enemy!

April 15, 2011 is the 3rd anniversary of my admission to the critical care unit, and I am living with numerous health conditions that did not exist previous to my reaction to lamotragine. Whenever I get a tingle in my lips, an itch that can't be satisfied, or swelling or tenderness in my face I secretly say "Oh-oh, here we go" and hope no one notices. My family and employer (local school district) are very supportive of my needs for rest and frequent Dr. visits, however I attempt to disguise my pain and fatigue with humor and silence. I don't think anyone really understands just how this disease can affect a person's daily activities. I keep trying to make it go away by exercising more, eating less (meds have added 20 lbs to my 5 foot frame) and living as though it never happened. but I just can't get it together for very long.
I am not overly fearful that I will react again; instead I am vigilant in the substances my M.D. requests I take, and am careful about the foods I eat (I have lived with food allergies for over 25 years). I have read numerous stories from SJS/TEN sufferers over the last few years, and I truly believe that I am one of the LUCKY ones, in that I have been able to resume as close to my normal life as can be expected - with some modifications. My faith in God is stronger than ever. I have no reason to ask "Why me?", because the answer may be "Why not?"

Some of the ongoing issues I have include: constant fatigue (I am always needing to rest), strength and muscle tone impairment, fluctuating vision which creates difficulty driving and reading, swallowing problems, tongue and cheek swelling (reduced taste buds, frequent cheek biting and scarring), fingernails that constantly split - up to the cuticle, hair that falls out with every brushing, skin that bruises easily and heals slowly, and constant equilibrium/ balance difficulties. These are a few of a host of symptoms relating to a severe reaction to 75mg of lamotragine (Lamyctal).

I am grateful to all the nurses at Walla Walla General Hospital, for their top notch care when I was so fragile with blisters and had to be kept on IV for hydration and steroids, and for their compassion and company when I was trying but not having much success at making jokes about my stay there. I was diagnosed within a few days, and I think everyone did their research to treat what was unknown until then.
Thank you to the SJS Foundation for giving us a forum for contact and discussion. I need to know there are other people with similar stories and that I am not alone in this path I take.

Shernie Wilkes 54 years old
Walla Walla WA
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ID: 100132 Time/Date: 07:50:47 PM PST/ 02-24-2011
Name: Ruby
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Story: I never thought in a million years this was possible. It is strange how it all happened,how ones face can become unrecognizable in such a short time, my husband explains it as unbelievable. That is until it happened. 21 days ago he had taken me to the local Hospital in Odessa Texas because I had a bad infection and fever we were just unaware of what or where. Without any testing they diagnosed me as having URI and Sinus infection. Administered meds and sent me home on 2 other occasions during the same week I returned with worse symptoms. On 2/16/2011 my husband brought me back to the same hospital were I was admitted to the ICU and at first told it was facial cellulites now they say it is Steven Johnson Syndrome and have reacted badly to all of the antibiotics and instead of being able to go home they want to start the process over. I have never even heard of this until 9 days ago. I am a little scared because it appears that there is no answer or cure anywhere. I have found some comfort in Julie's Story, experience, strength and hope. It is overwhelming to be 31 and finally seeking a spiritual aspect due to an illness I have no control over.
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ID: 100131 Time/Date: 04:37:10 AM PST/ 02-21-2011
Name: Nelly Waiya
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Story: No one should have to go through the pain my mother went through, i saw her skin peeling, her vision disappear, her mouth ulcerated to an extent that she could not eat nor speak.......
Being in a third world country(Kenya), health care is still in shambles, with poor infrastructure, few doctors, and barely no medication. To compound it, is the fact that SJS is a rare condition that has not been experienced in most health facilities, in fact i got to know about the condition from online resources. It was the most painful experience to see my beloved mom in so much pain yet there was nothing much i could do. Rest in peace my beloved mother.
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ID: 100130 Time/Date: 09:35:04 PM PST/ 02-12-2011
Name: Thomas
Email Address:
Story: Hello. My name is Thomas and i was diagnosed with SJS in the Summer of 2010. I was extremely fortunate that my case did not reach the severe level that so many others have had to experience, but i figured that just maybe my story can hopefully be useful to somebody down the road...

The drug that caused my SJS experience was sulfameth-trimethoprim, aka Bactrim (a sulfa drug). But before i share my story, a brief history of my medical situation should be known...

I've been taken medications for acne for several years. I've taken everything from topicals to oral antibiotics to accutane, and everything in between. One of the first oral pills i had taken was doxycycline. I was on the pill for months with no signs or a reaction, but i suffered from the stomach flu and as a result stopped taking the pill for about a week. After i had all of my strength was back and i felt 100%, i continued my medication. Within a couple of days of continuing, i had a reaction. My lips had swelled (i mean they were huge). I had no prior history to allergic reactions so i didn't have a clue of what was going on. Finally my mother had read the medication guide and i visited my family doctor the following day. The swelling had already begun to subside, but my Dr. gave me a shot and then prescribed me for a week treatment of Prednisone (cortico-steriod). Everything was fine and back to normal. I continued other acne medications, but nothing was very effective so i wanted to go on accutane. My skin was great and outside of one abnormal liver test which caused me to pause my treatment for 3 weeks, i didn't have any problems. After my 5 month course of accutane my skin was great, but within a couple of months my skin was getting bad again. I started a 2nd accutane course, but once again liver tests forced me to stop. I was 2 months into the 2nd course. This time my liver tests didn't immediately return to normal after pausing. As a result i was no longer able to stay on the one mediaction that significantly improved me skin. Upset by this i wanted to do something, anything to help my skin. Not allowed to go back on accutane, i was prescribed sulfameth-trimethoprim, aka Bactrim (a sulfa drug)...

AND HERE'S WHERE MY SJS STORY TRULY BEGINS. I took my 1st pill on a Monday. Everything was fine and i had no symptoms of anything. I took 2 pills a day, one in the morning and one in the evening. Exactly a week later i had went out golfing. It was a sunny day in the midwest and when i had returned home from playing my face was very red and stinging. In addition i had a headache and i quickly noticed that my eyes were extremely sensative. Any glare or light forced me to close my eyes and only worsened my headache. I assumed that i just had gotten sunburn or maybe sun poisoning. I took a nap and when i woke up my symptoms hadn't worsened any and i felt like they were actually improving so i continued my medication by taking a pill that evening. The next day my skin wasn't as red, but i still had a headache and very sensative eyes. I noticed that anytime i quickly moved my head that the back of my eyes hurt. In addition a new symptom arose. I had this weird tingly feeling in my throat. Whenever i'd attempt to take a deep breath i was forced to let out this weird little cough. A little uneasy and having a past drug allery, i decided to stop taking any pills until all of my symptoms were gone. Within a couple of days (by Friday) i was symptom free. Still a little curious, i decided to wait until Monday night to start up my medication again. I took my first pill around midnight. Almost immediately my skin felt like it was crawling. I was very itchy. Shortly after, my face and eyes were very red and the headache resurfaced. I was almost positive that it was indeed the drug that was causing my symptoms, but i wanted to try to wait it out. I mean, it was midnight and the ER was the only medical option - and the ER wasn't a place that made me feel at ease. As a result i attempted to hang tough at home, but within a couple of hours a fever had surfaced. By 5:00am, without sleeping at all, i felt like i was on fire and cold washclothes weren't doing much good. By 6:00am i decided that it was time to visit the ER. I took the pills with me and explained that i was almost positive that i was having an allergic reaction. The registration lady had a nurse come look at me and they quickly took me back for examination. The nurse did her examination and hooked me up to an EKG. She quickly was concerned when my heartrate was somewhere around 130-150. They wheeled me to the ER and doctors began to come in. Their biggest concern at that time was getting my heart rate to calm down. Unfortunately, it wasn't ready to and it only continued to climb. They hooked me up to IV's and gave me benadryl for the allergy symptoms. I realized that it was pretty serious when i had quickly been visited by about 5 doctors and several nurses kept peeking in my room. As my heartrate increased to over 180, they injected me twice with adenosine (which was a crazy experience). My heartrate stayed at around 120 after that (still high, but better). One of the doctors told me that i had been diagnosed with SJS, and explained it and TENS to me and what could happen. Obviously we couldn't do much, but take a wait-and-see approach and see how my case developed. As he told me that little rashes were likely to develop, i looked at the palms of my hands and indeed there were several 1/2-inch red spots. They were also developing on my arms and legs. The doctors had continued to keep my on the IV for fluids, potassium, and contuining to give me benadryl and a steriod. By 9am i was omitted to an actual hospital room (not the ER) for observation. I was visited by my doctor and another dermatologist, both whom had good hopes seeing that my visible skin symptoms hadn't developed outside of the small red spots. My heartrate stayed in the 120s until later that night, and by the morning it was back to normal. In addition, most of the red spots had dissappeared. They had visiably began to disappear that evening, but by the morning they were almost all gone. I was released after about 30 hours in the hosptial and the doctors prescribed me with prednisone and benadryl for a week. When i got home from the hospital i obviously got right on the internet to learn more about what i had been diagnosed with. Reading that the symptoms could continue to develop for a week and not knowing if i was out of the blue yet, i was obviously very uneasy for the following week. Reading and learning of just how serious SJS was, it was very scary. Fortunately my experience was short and minimal. I cannot express enough of how fortunate i feel, not having to experience the severe cases that so many diagnosed with SJS go through. I pray for everybody who is diagnosed.

I know my story has been extremely long, especially for a case that was not as severe as so many cases, but i hope that it can maybe help somebody down the road. If ever you have any questions or concerns regarding a possible reaction to a medication you're taken, be proactive. My past drug reaction helped me understand that a reaction could be severe and it just may have helped my case of SJS be as minimal as it was. Thanks for reading. Enjoy life and know that you're never alone.
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ID: 100129 Time/Date: 10:30:29 AM PST/ 02-09-2011
Name: Julie Matthews Grimes
Email Address:
Story: I am amazed at how many other people have had SJS, and I am so thankful to have found this website. My daughter is doing an independant study for a class on this subject and this is how I found the website. I was the fourth reported case of this in the United States, so there was no support for me growing up.

As for my story, when I was five years old, I had a kidney infection. My doctor put me on a sulfa drug. I don't know what drug it was, but immediately, I started getting a sore throat and a rash. Thankfully, my father was a pediatrician, and he recognized something was wrong. He called one of his partners, and I was diagnosed with SJS. I dn't remember a whole lot about that time. I was only 5 and I was running a fever of 104 so I was delirious most of the time. I do remember the sores on my lips and in my throat. I couldn't eat or drink because it hurt too much. I know that I had the sores elsewhere, but I couldn't tell you where now. Nature has a way of helping you forget especially when you are that young.

I was lucky. With my father being a physician, the drug was stopped very quickly. I was also lucky in that I didn't go to a hospital. I should have been in one, but at that time, I am not even sure that they would have known how to deal with my illness. This was 40 years ago so no one really knew much about SJS. My parents also felt that a hospital would scare me too much, so they opted to have me sleep with them and for my physician to come see me everyday. I am sure that if it became necessary, I would have been hospitalized immediately. I remember my doctor putting some kind of salve on me and using some kind of medicated swabs on my lips. I also remember having to have my eyes wiped to open them. I could tolerate ice chips so I was given plenty of ice to help keep me hydrated. Good friends of the family would bring me my favorite foods to eat in the hope that I could eat, but I couldn't eat. It hurt way too much.

I finally turned the corner 7 days in to my illness. My family had gotten a newfoundland puppy, and I got out of bed for the first time to see our little "bear." She looked just like a bear to me. My mother always called that dog her million dollar dog.

I am so sorry for those that have also suffered from SJS. As a result of this, I have alopecia and suffer from asthma. I am now getting arthritis at 45, and I wonder how much of my medical history has been related to SJS. I don't know that I will ever know for sure. I worry that my children might get this as well, so I refuse to let anyone give them a sulfa drug of any kind. It's always a scary thought.

Out of all of this, I feel lucky in so many ways. First of all, I had excellent doctors who were smart enough to diagnose me correctly. I have suffered from some side effects from this, but I have my life, my vision, and no real remaining scars. I know that things could have been very different for me. I don't know that my story will help anyone, but it's nice to be able to finally find a place to share my story and to get some answers. All of you are in my thoughts and prayers. Julie Matthews Grimes
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ID: 100128 Time/Date: 10:47:13 PM PST/ 02-05-2011
Name: Jessic Bunnll
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Story: My mother at he age of 52 just passed away November 8, 2010 from SJS. Her dealth was preventable and horrific. A atibiotic given to her in May of 2010 caused her first case. Although serve ebough to cause extensive scaring and months in a nursing home, she over came it. Only to be placed on the same meds in October when she was admitted for a small boil on her leg. The only hours of the same medication was given did she devlope the blisters again. This time serve enough to cause breathing issues to when she has to be placed on a vent. Over the next 2 days she devloped these blisters to over 90% of her body. After the stopped forming and her skin was completely removed, they discovered it had spread inside of her. He devloped many infections. After a month and a half fight. My mother had subcommed to her illness. Her medical charts stated to not give her that drug. They did and killed my mother. I was not even aware of SJS untill my mother fell ill. I fell cheated and betaryed. What ever I ca do to bring awareness to this matter I will.
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ID: 100127 Time/Date: 07:25:07 AM PST/ 01-27-2011
Name: Melissa Bryan
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Story: Bless all of you who deal with TEN & SJS. I have Epilepsy and just diagnosed with SJS. My first outbreak was last week. The pain is the most difficult. I have seen 8 physicians and been to the ER twice. But now that I have an DX that will stop. How do you deal with your seizure meds? My SJS was the result on 1 antibiotic pill. A slight reaction happened like this two other times not as bad. Thanks for reading my story.
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ID: 100126 Time/Date: 06:06:58 PM PST/ 01-24-2011
Name: Linda Michaello
Email Address:
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:
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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