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ID: 100109 Time/Date: 08:39:34 AM PDT/ 09-27-2010
Name: Will Teague
Email Address: smiles73@gmail.com
Story: When my son was 2, he ended up with a "typical" summer cold. He had congestion, a cough and fever. It was late at night, so I called the nurse hotline from my health care provider and she suggested that I "stack" Tylenol and Motrin (Ibuprofen). I gave him a dose of Tylenol, waited for 6 hours then gave him a dose of Ibuprofen. Within 20 minutes, his temperature (which was on it's way down after the Tylenol) began to rise rapidly. He broke out into a rash and I began to worry. He had previously had an allergic reaction to Rocephin, so I knew that the rash he developed was due to a reaction to the medicine I just gave him. He was very lethargic, as well. I rushed him to the local Emergency Room and in the 8 minutes that it took to drive to the hospital, he had developed blisters all over his body. I signed him in and sat in the waiting room. However, within 5 minutes, the blisters that were on him began to grow. I sat in the waiting room watching, horrified, as the blisters began growing together with others and were forming huge blisters (one reaching from his knee to his ankle). I jumped up, ran to the nurses station and began banging on the window and yelling for her to open the door. When she came to the door I explained what was happening and showed her. I thank God for that nurse, because as soon as she saw it, I think she knew what it was. She shuttled me to the back immediately and had a doctor in the room as soon as we got back there. The doctor and nurse began giving my son Benadryl and steroids to counteract his reaction to Ibuprofen. It took a few hours for his temperature to go back down from 103, but the blisters began to disappear almost immediately. I'm not at all sure that he would have survived this reaction if I had not taken him to the E.R. right away. I'm scared to death to give him any other medications because of this. He has had allergic reactions to other medications, such as codiene, but nothing like Ibuprofen. My son is now 5 and I'm not sure what the long term effects will be from this, but I try to remain vigilant of his health.
~Michelle
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ID: 100108 Time/Date: 03:10:43 PM PDT/ 09-16-2010
Name: Maria Carvajal
Email Address: mfcew@yahoo.it
Story: It's been 19 years since my mother got it, i was 16 then and in my country age of 16 its like a child.
She started to take some medication or several prescribed by a doctor for some sort of bronchitis, few days after she started to feel uneasy and her eyes became so red, she couldn't even coordinate her moves anymore, i didn't think it could be an allergy because we know when this happens it is all of a sudden but she was about a week feeling not so well, an uncle came by and said would be better to take her to a hospital so we did.
It was most horrid experience of my life rushing towards a hospital, and doctors came by and one said it was Steven Johnson, but she lived and now she is 85, thank god it did not complicate anything, but yeah she practically changed a skin if can be said, from feet to hands including nails, eyebrows, much part of her back, so many things.
It took about two months to be fine though the whole process took longer and i look back and say "Phew, what an experience", the good part of it, is that now people envy her feet, like a child's free calluses :D
It's all i can say, i guess i wanted to talk about it since it is first time i do so after 19 years.
Thank God
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ID: 100106 Time/Date: 01:13:56 AM PDT/ 09-06-2010
Name: margaret anne faichney
Email Address: megfaichney@aol.com
Story: hi my name is meg,i have had sjs for 24 years after i had a blood tranfusion when i gave birth to my third child i am allegic to all pain relief except paracetamol nd dia morph i recenly was in hospital and was given ora morph i took a reaction the diffrence between ora morph nd dia morph is ora morph compound turns into codiene in ur stomach i can no longer work im only 46 years im waiting for surgery on my back nd a liver tes because of meds taken over the years its not been easy puttin my fy through a livin nightmare my husband nd children have had a hard life with me nd sjs i have recently been told of the pain management at the hospital my nextbout of sjs will probabiy kill me bcos of the damage done to my body over the years i have just secomed to the computer age my husband got me a laptop now i dont feel so lonely and discovering a whole new world
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ID: 100105 Time/Date: 07:02:54 PM PDT/ 09-04-2010
Name: janine cuesta
Email Address: janine_cuesta@yahoo.com
Story: I was a victim of SJS since 2005 here in bacolod negros occidental philippines. Before that happen to me I was working in a beauty products then I drink a medecines its a paracetamol for headache then suddenly I suffer irritation to my eyes then it was developed periorbital angiodema with erythematous macules then my skin sloughed off in sheets.. But now im doing fine but i only suffer a dryness to my eyes i used an artificial tears but I dont know until when I used this
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ID: 100104 Time/Date: 06:58:50 AM PDT/ 08-27-2010
Name: Donna Aho
Email Address: donnalaho@AOL.com
Story: In 2000 auto accident and my mercedes was totaled but my hands clasped that wheel and had to be pried off in Miami overpass. An orthopedic doctor gave me celebrex which had just come on market and then script for it as my hands had swelled. I felt I was going thru menopause with hot flashes and loss of sight I attributed to macurlar degeneration. I remember going to dentist and the receptionist asking if I had been swimming in my pool as I was all wet. I said no just felt like I was burning up although no fever. Couldn't keep from burning. Each hospital visit was dismissed with hiatal hernia or edema. Finally in 2003 I went to Memorial hospital where they were discharging me for edema also the following day but a nurse had seen a story about SJS on tv the night before and had a hunch. She or he called the Univ of Miami med school and Jackson Trauma Hosp and gave them my symptoms. Dr. Eduardo Weiss drove himself up to hospital and diagnosed SJS within 5 minutes and was upset with staff for not knowing what it was. That nurse saved my life. I was spacked in ice and my eyes were lubricated and iced also. I could see the elevator but not the buttons on it. Problem was the delay caused them to flush my body with steroids and headaches began and to this day headaches similar to migraines occur. They said when steroids are used that way that may happen. It is as if my body aged 30 years and my sight is limited along with movement of my limbs. An orthopedist said it would take 4 surgeries jsut to repair my hands never mind the joints in rest of body. Pancreas wsa effected and all organs were blistered even now. I do notice my body organs feel as if they swelled during flareuups. I don''t know why.Narcolepsy set in and the only thing that can help is 600mg of Provigil. In April 2007 you issued a survey result and I checked over half of the results as being diagnosed already for me by doctors. Pfeizer admitted no warning was isused in 2000 for celebrex. I never had allergies prior to that but now gadolinium which is used for contrat dye in MRIs has become my enemy and ambulance was called. Don't know if there is a future as i become allergice to so many things now. I can't be in a room above 76 degrees or just burn. Photo phobia is a problem,. Dry eyes, etc. Just look at survey results and checked off over half already. Did win lawsuit, but they still don't realize the damage done by SJS/TENS as the award was very small but recognized for us.
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ID: 100103 Time/Date: 01:47:49 PM PDT/ 08-25-2010
Name: Megan Rose
Email Address: EmailAddress@notprovided.com
Story: Hi, My name is Megan Rose. This past year I got sick. I am Sixteen years old, I was on bactrum. I started to get extremely sick. I kept getting sick after every time I drank or ate; so dizzy one night I slept on the bathroom floor. I had called my mom one day while she was at work telling her how sick I felt. As I looked in the mirror I saw nothing wrong with me, but my mom and the doctors saw otherwise. My skin Was ice cold and had patches of purple. As I sat at the ER My white part of my eyes were blood red. The doctor bless her heart, came up with what it might be. She printed information out and my parents read it. By the look on their faces I knew it wasn't good. I wouldn't read or listen to what they said about it. I couldn't handle it. As soon as I got to choc they started me on IV doing everything they could to keep fluids in me. For nights I didn't sleep, I couldn't. I laid awake and cried. I had no idea what was going to happen to me; I was terrified. I prayed and prayed to get better. I was afraid I would have to get skin graphs on my face. To everyone else I acted fine trying to stay strong for my family and friends. I was accepting that I was sick and I told myself I would get better. After A week I left the hospital almost twenty pounds lighter.
When I got to school I kept my eyes low and my arms and legs covered. People knew I was sick but every time I looked at someone they would freak out about my eyes...It was horrible. People staring left and right.

As I time goes by It feels like years ago I was so sick. My skin and eyes have cleared up. Though I am even more sensitive to cold than I usually am, sometimes I get cold when it extremely hot outside. Kind of crazy if you ask me. My eyes sight has gotten worse and Im afraid it may keep getting worse. I go to the doctors today.

Writing this isn't easy, Today is the first day after months I finally looked things up. It made me cry thinking about what could have been. What others have gone through. How I got so lucky in that shit hole situation. Im so lucky that I have made it through being sick. And to all the families of lost ones and patients of Steven Johnson syndrome, Your in my prayers.

In that hospital bed I feel like I have lost a part of me. I hope one day I can find that girl again.
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ID: 100103 Time/Date: 01:47:49 PM PDT/ 08-25-2010
Name: Megan Rose
Email Address: EmailAddress@notprovided.com
Story: Hi, My name is Megan Rose. This past year I got sick. I am Sixteen years old, I was on bactrum. I started to get extremely sick. I kept getting sick after every time I drank or ate; so dizzy one night I slept on the bathroom floor. I had called my mom one day while she was at work telling her how sick I felt. As I looked in the mirror I saw nothing wrong with me, but my mom and the doctors saw otherwise. My skin Was ice cold and had patches of purple. As I sat at the ER My white part of my eyes were blood red. The doctor bless her heart, came up with what it might be. She printed information out and my parents read it. By the look on their faces I knew it wasn't good. I wouldn't read or listen to what they said about it. I couldn't handle it. As soon as I got to choc they started me on IV doing everything they could to keep fluids in me. For nights I didn't sleep, I couldn't. I laid awake and cried. I had no idea what was going to happen to me; I was terrified. I prayed and prayed to get better. I was afraid I would have to get skin graphs on my face. To everyone else I acted fine trying to stay strong for my family and friends. I was accepting that I was sick and I told myself I would get better. After A week I left the hospital almost twenty pounds lighter.
When I got to school I kept my eyes low and my arms and legs covered. People knew I was sick but every time I looked at someone they would freak out about my eyes...It was horrible. People staring left and right.

As I time goes by It feels like years ago I was so sick. My skin and eyes have cleared up. Though I am even more sensitive to cold than I usually am, sometimes I get cold when it extremely hot outside. Kind of crazy if you ask me. My eyes sight has gotten worse and Im afraid it may keep getting worse. I go to the doctors today.

Writing this isn't easy, Today is the first day after months I finally looked things up. It made me cry thinking about what could have been. What others have gone through. How I got so lucky in that shit hole situation. Im so lucky that I have made it through being sick. And to all the families of lost ones and patients of Steven Johnson syndrome, Your in my prayers.

In that hospital bed I feel like I have lost a part of me. I hope one day I can find that girl again.
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ID: 100102 Time/Date: 04:57:04 AM PDT/ 08-15-2010
Name: Jessica Martins
Email Address: EmailAddress@notprovided.com
Story:
Back in 2006 I was 19 and just gotten home from work. I took my seizure meds. when almost instantly I felt weak and sick. I thought I might have a seizure ( I am epileptic ) and since I was the only one home at the time I called my aunt and asked her to pick me up because I was scared. When I hung up the phone I noticed a burning feeling on my hip and when I looked down I also noticed my skin was peeling like sunburn only thicker. I don't exactly know what happened after that. I only remember waking up in the hospital to a doctor telling me I had a rare skin condition called steven johnsons syndrome. From the hospital in wahiawa I was then transported by ambulance to queens hospital where I spent about 2 months. I consider myself lucky because my sjs was such a minor case compared to others but it still hurt like hell and it still haunts me to this day. I got my sjs as an allergic reaction to my seizure medication tegretol.
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ID: 100101 Time/Date: 11:46:44 PM PDT/ 08-14-2010
Name: Chris
Email Address: FoolishPuck@Hotmail.com
Story: I'm a SJS survivor! I was diagnosed with it at the age of 23, in 2003. I was having tooth surgery that year, and i was prescribed vicoden for the after pain of the surgery. When I took this vicaden, not even 4 hours of taking it, i started getting a blister on my finger. it was burning a lot, so i put it under cold water. then, it got worse. sores started opening in my mouth over night, i woke up the next morning and had sores all over my lips, my armpits, genital area, it was very painful. I felt like i was on fire every time i would move. And for me being a male, this was even more painful. I could not eat, could not drink with out screaming in pain. Though blisters appraed around my eyes, they never shut, so i believe i was lucky in that. My wife freaked out and rushed me to the hospital. They saw me as some type of new disease patient and quarantined me from everybody else. When they could not figure out what was wrong with me, they let me go and just told my wife to soak my sores in vinegar. that stung! After hearing about a dermatologist that was recommended to me, I went to check him out. And believe me, walking was the most painful thing i have ever experienced with all these open sores every where. It felt like my skin was on fire 24/7. When he saw me, he freaked, and diagnosed me right away with SJS. After taking some steroids, and just resting, while keeping my sores pretty much wet with water and medicine constantly, i healed. But that was not the end. I have had 2 more major breakouts since then, ervey time finding out a new medicine that i can't take. first codeine, then hydrochloride, now i can't eve take alive or Excedrin with out breaking out! But you know what? I'm still here! I'm still alive and kicking and lively! I just know now what to take and what not to take. The government really needs to know about this problem! It's sad that the hospital i went to could not even tell me what i have and treating me like i was a leper! I pray that i will never have a breakout again, but with god on my side, i can survive.
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ID: 100100 Time/Date: 05:22:54 PM PDT/ 08-08-2010
Name: steven johnson syndrome foundation
Email Address: gloria.solomon@yahoo.com
Story: hi, my name is gloria solomon, i have a 19 old son who is being attaced by a rare disease called erythema multiforme. i was told that there is no known cure for this disease.it starts with a blasters on his knees,palms,back of palms ,inside his mouth,and all parts and patches all over his arms. he is not able to talk,eat or play his favorite game basketball. please help me because i have no where to turn. this is reoccuring more often and each time more severe. i watch my energetic son very tired and weak. i don.t want him to go through life at this young age not knowing if this horrific disease is going to attach and when.

concerned mother.
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