Read SJS/TEN Stories Close Window
Read stories results: Found 180 matches out of 180 records.
[Search story]


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
Add Email to Story: Yes

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.
Add Email to Story: Yes

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.
Add Email to Story: No

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.
Add Email to Story: No

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.
Add Email to Story: No

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.
Add Email to Story: Yes

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.
Add Email to Story: Yes

ID: 100099 Time/Date: 04:20:32 PM PDT/ 08-08-2010
Name: Renee
Email Address: EmailAddress@notprovided.com
Story: I am still awaiting a confirmed diagnosis, but I know that what I have experienced is more than just EM (not that that is not bad enough). It started over an infection in my arm. I was put on bactrim and took it for about 8 days before a problem began. On the 8th day, I started running a fever, I figured it was just a virus. I then began with a slight rash on my chest. That night, I woke up, got very dizzy, passed out, and hit my head.

When I woke up the following day, I had a fever of 103 and a rash that covered my entire body! I went to the doctor, got a shot of steroids and was put on tapering steroids as well. I was told to go directly to the er if skin started sloughing off, etc. That day I had a fever up to 105 despite repeated doses of tylenol. I also developed some sores in my mouth (small ones), and it burned the following day from my mouth to my stomach to eat anything more than yogurt.

I am still experiencing flares in the rash, and have not yet been able to taper my meds. I am just so grateful that i was a lucky one who did not get any worse than i have. Again, the diagnosis of EM has been made with a couple of doctors leaning towards the SJS. I think the thing that throws them though is the little mucous membrane involvement. Could that be because of the steriods that were started so quickly? I don't know.
Add Email to Story: No

ID: 100098 Time/Date: 08:51:38 PM PDT/ 07-18-2010
Name: charity brown
Email Address: ackcj84@yahoo.com
Story: HELLO MY NAME IS CHARITY BROWN AND I AM A STEVENS JOHNSONS SYNDROME SURVIVOR. AROUND OR ABOUT MAY 17, 2010, I WAS PUT IN JAIL DUE TO NON PAYMENT ON A OLD BILL. WHEN I WENT INTO THE JAIL I LET THE JAIL STAFF AND NURSES AND DOCTORS KNOW THAT I HAVE CHRONIC SEIZURES AND HAD MY OWN MEDICINCE WITH ME WHEN I CAME IN. THEY TOOK MY MEDICINE AND DECIEDED TO GIVE ME WHAT THEY WANTED WITHOUT EVEN DOING A HISTORY HEALTH CHECK. AFTER BEING IN THERE A WEEK AND BEING ON THEIR MEDS I STARTED HAVING PROBLEMS. I LET THE JAIL STAFF AND NURSES KNOW AND THEY IGNORED ME. BY THE THIRED WEEK OF THEIR MEDS. MY MOUTH WAS COVERED INSIDE AND OUT WITH BLISTERS, I COULDNT SEE DUE TO MY EYES CLOSING SHUT, I WAS HAVING A VERY HARD TIME BREATHING AND YET THEY ALL STILL IGNORED ME AND SAID I WAS FINE. IT WAS ONLY WHEN A JAIL C.O. SEEN ME AND SEEN HOW WORSE I WAS GETTING DID THEY TRANSFER ME TO THE HOSPITAL. BY THE TIME I GOT THERE I WAS ALMOST DEAD. MY OXYGEN WAS 70-80%, MY TEMPERATURE WAS 105.3 THAT THEY COULDNT GET DOWN I WAS IN SEVERE PAIN AND MY EYES AND MOUTH HAD SWOLLOEN SHUT.THE SKIN ON MY LIPS HAD PEELED AWAY AS WITH THE SKIN ON MY BODY ALSO AND BOILS STARTED FORMING. I WAS TRANSFERRED TO TWO DIFFERENT HOSPITALS DUE TO THEM NOT KNOWING WHAT I HAD OR WAS WRONG WITH ME AND THEN TRANSFERRED TO ANOTHER HOSPITAL IN A DIFFERENT TOWN BEFORE FINALLY BEING DIAGNOSED WITH STEVEN JOHNSON SYNDROME. I SPENT ABOUT ALMOST A MONTH IN THE HOSPITAL. I DID REGAIN EYESIGHT BUT STILL HAVE PROBLEMS WITH VISION. THE BOILS THAT FORMED ALL OVER MY BODY AND FACE ARE GONE BUT SCARS NOW. MY MOUTH AND TASTE BUDS ARE VERY SENSITIVE TO EVERYTHING. I THANK GOD I SURVIVED, BUT AM DEALING WITH THE REALITY AND SCARS OF IT ALL NOW. ALL DUE TO BEING IGNORED WHEN I TOLD THEM I WAS HAVING AN ALLERGIC REACTION TO THEIR MEDICINE. I
Add Email to Story: Yes

ID: 100097 Time/Date: 09:45:05 AM PDT/ 07-18-2010
Name: Dr.Satyendra singh
Email Address: Kuntalsatya@yahoo.com
Story: My self dr.Satyendra singh medical officer Rajsthan (India) has develop sjs 1 month ago with bupropion drug. Initialy i develop rash and then whole body redness but my dermatologist misdiagnos with erythema multiforma and after one day skin exfoliation occure then i read harrison about cutenious reactions and diagnose my prob that is sjs. Due to sjs i heralded my life about 1 month. I want to request plz send me awarenes material by which i aware people. If possible plz invite me and then share my painfull experience with you. Thanks
Add Email to Story: Yes

Total number of records: 180 Pages:  Previous 2.4 3.4 4.4 5.4 6.4 7.4 8.4 9.4 10.4 11.4 12.4 13.4 14.4 15.4 16.4 Next