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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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ID: 100110 Time/Date: 04:17:05 AM PDT/ 09-29-2010
Name: Allyssa Flagg
Email Address: ladylys84@hotmail.com
Story: I am a 25 year old mother of 2 beautiful little girls. I was just released from the hospital yesterday after being treated for 10 days for SJS.I had an allergic reaction to the medication Lamictal. I was treated with IV,comfort,steroids and support at St. Joseph Hospital in Nashua NH. Before i went there and was diagnosed i struggled with E.R. my P.C.P. for about a week. Being told that my problem was Viral, and that it wasnt an allergic reaction to my meds. I knew that it was and i knew that i needed better treatement. Physicians and people are not as informed as they should be. The blisters plagued my face,chest,upperback,tummy,arms,face,eyes,nose,lips, mouth,throat,gi tract,reproductive organs, my nether region...everything. the most extreme pain i have ever endured. so hot, burning and no fever. not able to eat, my eyesight is blurry,my eyes are extremely sensitive to light,wind, they are dry and irritated, they are still sloughing. I dont know what the longterm effects of this will be yet. but i am scared. I was told that this would go away in a couple of weeks. now i am out of the hospital and able to do my own research and i am terrified. This can last for a lifetime. I may lose my vision.I can already see that i am going to struggle with that the most. i get really cold and hot, like my body's thermostat is broken...who knows what else it hasnt even been 24 hours since i got out of the hospital. I am not going to give up. I am so angered at the lack or awareness there is for SJS/TENS. We need to do something. I think i found my calling. I refuse to sit and suffer in silence. Everyone is going to know about this dibilitating disease by the time i am done on this earth. I am blessed to have my life, that it wasnt worse then it was. It could have been so much worse. People need to know about SJS. My heart goes out to the families of those who did not survive. And to SJS patients who did, thank god.lets spread the word. stay strong
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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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Total number of records: 174 Pages:  Previous 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 Next