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ID: 100138 Time/Date: 04:10:52 PM PDT/ 05-04-2011
Name: Raina Hammond
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Story: I had a 72 year old man living with me wo became realy sick .he went in to the hospital were they had togive him a high dose of meds. This mad him have a elergic ack to it,It caused him to get SJS .it hurt my heart to see this man in the pain that he was in .his skin just melted away.looks like burns. and blisters everywere on his body.He sufferd it got so bad .this is something that no one should go throw .he passed may 3 .it is realy hard to see a person go throw that .i feel for anyone who has went throw that and to all the familys who lost some one to SJS. It is realy sad that companys wont you to take there meds to make you better and they can KILL YOU .SJS IS ONE Of them ....14
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ID: 100137 Time/Date: 07:05:06 PM PDT/ 04-19-2011
Name: Amy Nyman
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Story: My daughter, Ivy - aged 4, had SJS two months ago; in February 2011. She had taken a full 10-day course of Bactrim for a UTI. She had never had Bactrim or any other Sulfa drug before, but both my mother and I are allergic to Sulfa drugs (I'd had hives, my mother a small rash.) It seems clear to me there's some genetic predisposition at work here and I will never allow my other daughter to be given a Sulfa drug.

On day 10 of taking the Bactrim, Ivy was more tired than usual and her face looked flushed. The following day, she awoke with a very faint rash on her arms and legs and I suspected a drug reaction immediately (she had had an allergic rash after taking a full course of Amoxillin several years prior.) We couldn't see our usual pediatrician that day but we saw another doctor in the practice who diagnosed Fifth Disease, even though Ivy had already had that and this looked different. The following day the rash was more pronounced and she developed a slight fever. I called the pediatrician again and was told it still could be Fifth Disease. The following day she was much worse: fever of 102-103 and a bright red rash covering her entire body and the most worrisome of all: she was complaining of "bumps" in her mouth. I brought her in again and we got to see her usual pediatrician. She was pretty sure it was a reaction to the Bactrim as soon as she saw her, and mentioned SJS as a possibility. She told us to go directly to the ER if anything got worse with her eyes (they were just a little red) or her mouth (her lips were just a tiny bit swollen at that time) She also suggested we come in the following morning (Saturday) because she was working then and would see if anything had gotten worse. After a sleepless night for all of us, we returned to the office Saturday morning. At that time, her pediatrician saw a blister in Ivy's throat and sent us directly to Children's Hospital at Scottish Rite, Atlanta.

Once there, they did bloodwork to rule out Kawasaki Disease, which can look very similar. Labs were normal except for white blood cell count and they made the official SJS diagnosis. At that time, Ivy was still feverish and covered in the bright red rash but still only had blisters in her mouth and throat. They admitted us and advised IVIG treatment, explaining that we could 1) do nothing 2) use steroids or 3) use IVIG. They recommended IVIG saying that patients with this treatment have done best, in their experience. We were so fortunate that Ivy was seen by two Pediatric Infectious Disease doctors who had seen many SJS patients (one of the doctors estimated he'd seen 50 in 30 years of practice!) In contrast, most of the pediatricians and nursing staff we saw had seen none. During our stay however, one of the Infectious Disease drs said there were 3 cases of SJS in that hospital at the same time as us!

Ivy had to have two rounds of IVIG treatment and they did make things worse before she got better, as the doctors had warned. Ivy's skin then started to blister and her cheeks, arms and hands were completely swollen and bright red. Her lips were also incredibly blistered and swollen and she couldn't eat or drink much of anything for days. For a few days, she slept and I cried. Finally, she turned a corner and was up, chatting, wanting to walk and eat! Amazingly, her mucous membrane involvement seemed limited to her mouth and throat only - she had no real issues with her eyes (only redness) or problems urinating, etc. They did consider hers a "mild" case.

In the two months since we left the hospital, she has only traces of the rash on her cheeks, arms, legs and buttocks. There have been no other issues we can see. I know just how fortunate we are, but I am terrified that this could happen again - to her or my other daughter. Both have suspected allergies to amoxicillin and my other daughter is thought to be allergic to cephalosporins as well. I am so afraid one or both of them will have an SJS reaction to some medication in the future! We are scheduled to have penicillin skin testing done on both of them in a few weeks. The allergist seems to feel they are in no danger from that, but I am quite worried about it.

If you've read this far, thank you! I'm so grateful to have found this website and community as I want to learn as much as possible about this condition. I wish the best to you all as you cope with the after-effects and uncertainty that comes with a past SJS diagnosis.
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ID: 100136 Time/Date: 10:27:31 PM PDT/ 04-17-2011
Name: kelsey dettinger
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Story: August 4, 2009 i became sick, my boyfriend at the time gave me some ibuprofen to get my fever down (it was at 101.2). Later that night i started to feel even worse, itook my temperature and it had rised to 104.6 (while the ibuprofen was in my system). So i decided to go to the emergency room here at our local hospital. They took some blood work, and did some xrays, and could find nothing wrong. My mom noticed i was starting to get a rash, and the doctors brushed it off, gave me some pain medicine, and told me if i felt like this in a week, to come back.

Later that night i woke up, it was 2:37am, and started getting sick, uncontrollably, my eyes felt like theywere glued shut, so i ran to the bathroom. i had a bunch of gunky looking stuff in my eyes, and noticed i was extremely itchy. i had little red dots all over my body. it looked like i had the chicken pox. my mom woke me up at 7:00 am, and asked me how i felt, i told her i needed to go to the doctor as soon as possible, because something was not right, i felt weird.

As soon as we got to the doctors, my doctor looked at me, and told me i needed to get to st.francis immediatly. (it was 45 minutes away). so she called for an ambulance.

When we finally got to the hospital, they put ivs in me immediatly, and started taking a bunch of blood. no one knew what was wrong with me, what were once little dots were turning into bigger bumps. so all the doctors thought i had the mumps.

my mom left that night, and told me she would be back in the morning, because she couldnt find anyone to keep my little sister over night.

At about 9:00pm the doctors came into my room, and asked me what my moms phone number was because they needed her to come to the hospital, i had no idea what was going on. my mom got there and they told her i needed to be moved to the ICU.

The next day theyfigured out that i had sjs/tens. i kept asking when my boyfriend was coming because he told me he would be coming to visit me. when he finally got there, i tslkedto him for about 5 minuted before my eyes started burning uncontrollobly. i went to the bathroom, and my eyes had turned blue.(they have always been dark brown).

For the next few weeks i was really out of it and dont really remember much. my eyes had blistered shut, and i couldnt see. i remember the pain, from the blisters, and waking up not being able to breath. i was told i had blisters innside my lungs, inside my body, and outside of my body. i looked like i had been in a fire.

I was in the hospital for the whole month of august in 2009. 3 1/2 weeks in the icu, and the rest in a normal room. the doctors didnt think i would make it, but i did.

SJS/TENS has effected my life. i now have a fear of taking any medication, i have bad panic attacks. and both of my eyes are messed up. my left eye is always dry, i have to put artificial tears in it every 30 minutes, and my right one is always watering. i would not wish sjs/tens on my worst enemy.

if anyone has gone through this, or has someone going through this and needs someone to talk to, id be more than happy to talk. and i appreciate anyone who has read my story.

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ID: 100135 Time/Date: 10:31:54 AM PDT/ 04-15-2011
Name: Crystal Finau
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Story: News

Georgia Teen Hospitalized At Stanford After Trip To Disneyland Turns Tragic

- view video -
PALO ALTO: Basketball Star On Life Support In Stanford After Suffering An Aneurysm
Updated on: 2011-04-15 03:38:06

Story Updated 2011.04.15 at 12:28 AM PDT

A high school basketball star's first trip to Disneyland turned into a tragedy.

18-year-old Miguel Windley, a high school senior from Columbus, Georgia always dreamed of coming to California. He had just won a basketball championship and was planning to celebrate with a trip to Disneyland.

"He got on the flight, I was waving to him and I'm thinking 'yay' look at my baby he's taking a flight by himself with his friends," Miguel's mother, Nanette Windley said. "He never made it to Disneyland."

He suffered an aneurism on the plane. On Thursday, Miguel was in the intensive care unit at Stanford Hospital where he underwent two open heart surgeries but there were complications.

"I don't know how this happened, but my son is burning inside out ... he's burning constantly, his skin is peeling constantly," Windley said. "He doesn't look like my son at all."

Windley says doctors told her Miguel developed Stevens-Johnson Syndrome. The rare disease causes a person's skin to peel off. He is blistered all over and is now blind.

Windley is running out of money for lodging, food, and transportation. She's been told that Stanford can't provide the specialized burn care Miguel needs.

"They tried to send him to Berkeley burn unit but they wouldn't accept him because he's not a resident of California," Windley said.

To donate funds to assist in Miguel Windley's recovery donate to Bank of America under the account: The Miguel Windley Special Needs Trust Account #05207-72178

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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
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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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