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| Read stories results: Found 180 matches out of 180 records.
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| ID: | 100069
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Time/Date: | 03:24:12 PM PST/ 11-15-2009 |
| Name: | Suzanne Bell |
| Email Address: | sebell1862@aol.com |
| Story: | On Thursday, October 8, 2009, my 17 year old daughter, Karyl, began complaining of itchy eyes while at school. She hadn’t taken any over the counter or prescription medication or had worn or eaten anything differently. Upon coming home that night her eyes were swollen but we thought it could have been due to the contacts. That night, she awoke not feeling well and by morning her face around her eyes and mouth was swollen.
I took her to the doctor and they treated her with Benedryl and antibiotics but she began to run a high fever and a rash began to develop. We were sent home and later that evening, her tongue began to swell. Fearing where this was leading we took her to the emergency room where she was immediately diagnosed with SJS. She was admitted to the pediatrics unit and kept in isolation until they could determine what had caused this reaction. All of her medical tests came back negative. There was no reason for this. We went through every possible allergen and couldn’t come up with any ideas except something at school. The school was dealing with a severe mold issue and was in the process of removing materials that tested positive for all sorts of spore types. They were also spraying chemicals within the classroom areas to disinfect the area of the school. The doctors could only tell me that in their opinion, it was a contact allergen that she had been exposed to within four hours of onset.
Needless to say, I spent 17 days in the hospital with my daughter. The blistering covered her body especially her face and chest. Her body, arms and legs were less affected. Her eyes were severely affected with scratches to her corneas and blistering as well as blistering to her mouth and her lips. The eye specialists and cornea specialists were in to see her at least twice a day during our stay constantly working on her eyes and putting drops in.
Although her skin is healed, there is discoloration. She is very light sensitive and must wear sunglasses inside and outside. She still tires very easy and struggles to use her eyesight. She can see however it is blurry and we are constantly putting drops in her eyes to keep them hydrated. We have follow ups with the eye specialist and everything else we’ve been told will take time.
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| Add Email to Story: | Yes |
| ID: | 100068
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Time/Date: | 07:41:31 PM PST/ 11-12-2009 |
| Name: | Evie |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I was diagnosed with SJS June 25 2009 after having a reaction from Lamictal. I had no idea what was happening to my body because i was told I may get a rash that looked like a sunburn, instead i was covered in blisters. I wasnt put in the hospital right away but instead given oral steroids. Three days later the blisters had traveled down my esophagus and i couldnt swallow. I was treated first in Gloversville and then transferred to Albany Med where i stayed in ICU for 8 days. After getting out of the hospital i had another reaction from the Nexium they had me on. It was probably one of the hardest, worst experiences of my life and i'm glad i made it through ok. I now try to tell everyone i can that this kind of thing happens. I had no idea what SJS was or heard of it until i ended up with it. Hopefully someday they can find a cure. |
| Add Email to Story: | No |
| ID: | 100065
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Time/Date: | 06:42:30 PM PDT/ 10-14-2009 |
| Name: | Pamela Hudson |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I am 37 years old, I have multiple myeloma(cancer of the bone marrow), and kidney failure. I recently was diagnosed with sjs and this was the first time I had ever heard of it. One Friday I was at home with my two children, ages 8 and ten, when all of a sudden my mouth and lips began to feel very irritated. I really did'nt think much of it that night I thought it was somthing that I had eaten. The next morning when I woke up I was swollen and had red spots all over my body which progressed rapidly over the day,I also began to run a fever. The next day I decided to go to the ER to find out what was going on with my body. While in the ER I was told that I had an drug reaction and was sent home with a cortisteriod. I stayed home for a week taking this cortisteriod that had been prescribed to me and hoping this would all be over soon, but it only got worse. That following weekend I noticed my skin beagan to just peel off. I had made my mind up then that I was not going to just sit around and hope anymore, It was time for my Dr. to see what I looked like. Monday morning instead of calling my doctor I decided to jsut show up and demand that he get me the treatment that I needed. I was sent to see a dermatologist for his opinion of whether or not it was sjs and it was. That day I was admitted into the hospital (not the burn unit or icu) for treatment, there I stayed for three days. Since then my skin has really improved, however I do have some permament scarring on my body. I though my case was not as severe as others I have been told and read about, I do realize that sjs is no laughing matter. I pray for all that has gone or is going through this. |
| Add Email to Story: | No |
| ID: | 100064
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Time/Date: | 01:25:41 PM PDT/ 10-11-2009 |
| Name: | Vincent Adude Onyokor |
| Email Address: | vincentadude@yahoo.com |
| Story: | In January 2009, my daughter Ivana Kotilda Nalusiba (aged 4) fell sick and was taken to Savannah Sunrise Clinics, Inc in Kampala-Uganda for treatment. She was said to have an infection and was treated and we returned home. A day later, the child was not gettimg any better and she developed high fever, with red eyes, loss of appetite, with some rush on her face.
We returned her to the sme clinic and she was diagnosed to have chicken pox and given an antibiotic (Zinat). A day later the child developed multiple rushes with sores in the whole mucus membrane and we rushed her to Kololo Hospital in Kampala.
At Kololo Hospital, alot of tests were carried out which proved negative. Later a consultant confirmed that my daughter suffered from a drug reaction and had developed full blown steven johnson syndrome (SJS). Ofcourse we did not know what it was and what to expect.
For six weeks, the child fed through a tube nd survived on only fluids. It was a terrible experience that my wife and family had to go through. The medical expenses were just unbearable and it was by God's grace that she managed to survive. However she recovered with multiple scars which have seriously affected her skin. She had a lot of complications when she came out of hospital, with difficulties in passing out urine and stool. She had to undergo another operation to have the stool passage corrected.
To date our daughter is looking so terrible and we have been emotionally affected as parents and the entire family.We dont know what to do. Just last week we have to return to the hospital for another operation to reconstruct her neck, the scars on the neck could not allow free movement of the neck.
Our attempts to bring this to the attention of the medical service providers and hold them accountable have proved futile. The child will require plastic surgey to reconstruct her skin which is badly damaged by the effect of the reaction.
We appeal for any information, advise and support to help this girl lead a normal life. We will be able to send her pictures while in hospital to whoever cares.
Thanks.
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| Add Email to Story: | Yes |
| ID: | 100063
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Time/Date: | 07:49:50 PM PDT/ 10-09-2009 |
| Name: | Susan |
| Email Address: | EmailAddress@notprovided.com |
| Story: | Hi,
My prayers go out to all of you and your family members that have suffered from SJS. Unfortunately, I have a niece who is diagnosed with SJS. She is nineteen years old. She is a very sweet person. She just graduated this year. She is a great athlete. She has been in the hospital two months. She has not opened her eyes, she is badly burned, her hair has fallen out. I am not really sure what type of medication she had taken. I think it was amoxicillin.
I have never heard of this fetal disease. My heart aches for you all that have been though this. Please pray for my niece and her family.
You can contact me at augred@hotmail.com for further discussion.
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| Add Email to Story: | No |
| ID: | 100062
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Time/Date: | 02:42:27 PM PDT/ 10-09-2009 |
| Name: | roxanne eberhard |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I have the distinction of being diagnosed by the head of Stanford University in the early 70's as the second known case in the history of California .Pictures of me were pubished in medical journals due to the rarity and severity of my condition.
My parents had no resources or experts to talk to , there was no internet to log on to.They could only stand by my bed and watch as a stream of doctors and interns paraded by to to gawk at me and take pictures as I lay incased in refridgerated sheets ,hooked to a myriad of machines .
What I remember most was being at my grandparents and being sick with what they thought was a heat rash. I remember my uncle comming home from work one day and giving a great big hug as my grandmother expressed her concerns. Then I remember being in an ambulance deperately wanting a drink of water and my mother telling me I couldn't have one.I learned later that I couldn't because my throat was almost completely swollen shut .
My next memory is having my arms tied to the bed so I wouldn't scratch myself raw and then as the dead skin started sloughing off pulling the top layer off my entire palm.
I was 5 years old. |
| Add Email to Story: | No |
| ID: | 100061
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Time/Date: | 12:07:32 PM PDT/ 10-07-2009 |
| Name: | Laura Singer |
| Email Address: | EmailAddress@notprovided.com |
| Story: | In 1980 my brother died of Steven Johnson Syndrom and it still as fresh as it was so long ago. My brother was a healthy young 26 year old man with his life ready to live a head of him but it was cut short by SJS. I always thought that it would of been better if her would of been struck by lightining so I could better understand what had happened to him. I was 18 years old at the time I herd my big brother had been admitted to the hospital due to a reaction he had to a sulfur drug he had taken to clear up a blader infection. He was addmitted to the hospital with a rash and on day 5 of his stay April 29th 1980 at Jackson mormioral Hospital he was in a coma and to die the next day. He was in the burn ward and was on morphine for the pain. When he died our family wanted to donate any body part that may be useful to someone but he had nothing left all of his vital organs from his skin to anything else was burned beond use.
He also suffered a horible death and I so many times ask why did someone so kind and loved have to suffer so much? It is hard to understand this rare reaction and I still do not understand and ask for answers but I don't know if I will ever have them. When I read Julie's story I thought to myself they are the lucky ones to still have their loved one with them but it must of not been easy to go through what they had to endure. I am pleased to have found this website to help me better understand SJS and also gain the support I have needed all these years. |
| Add Email to Story: | No |
| ID: | 100060
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Time/Date: | 09:02:41 PM PDT/ 10-01-2009 |
| Name: | Paula |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I had a flu vaccine last Thursday. I was given a double dose in error. I developed large sores on my lips, left cheek and right temple. my trunk back and chest broke out with red and purple circular wheels and the pain and inching. I could not touch my skin. I saw the internal medicine PA "I was asked what do you want me to do" After the sarcastic answer of how about putting the fire out on my body, she said she would give me attarax. Guess what did not work, I was having fevers, chills and the spots growing and growing. I went to eat breakfast Tuesday morning and when I ate one bite of toast. I thought I stuck razor blades in my mouth. My mouth was bleeding. I called the dermatologist, they said only the PA cn see you, I thought again, I thought I was on fire,`so i went on in. When the PA saw me she said this is beyond my scope I must get the doctor right away. Holy crap was his comment and I was told I had Steven Johnson's syndrome. I am a medical provider I found myself in unfamiliar territory. I received 2 injections steroid, hospital but I want to go home, the doc gave me a few hours to see if I would respond. I was scared of catching a nosocomial infection that would kill me. I am on the mend of this horrible experience. I have had this condition 3 times. I have face scaring and my trunk (back and front discolored and disfigure). I was told be sure my affairs are in order, because we know now the meds but we do not know the future. I am grieving. I am sad. angry, and going to be good one day at a time. |
| Add Email to Story: | No |
| ID: | 100059
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Time/Date: | 12:34:32 PM PDT/ 09-29-2009 |
| Name: | Michelle Rochon |
| Email Address: | michellerochon1996@hotmail.com |
| Story: | I am having a difficult time with this. My 6 yr old son was diagnosed on 9-16-09 with an ear, sinus, and upper respiratory infection. The doctor prescribed azithromycin for him to take. He started it that day, and later in the evening i noticed the palms of his hands were red. I thought dry skin since we live in Alaska and it is getting to be winter and starting to get cold. I put lotion on him and sent him to bed. The next morning he was complaing of his hands burning. They were still red and warm to the touch, i put more lotion on them and sent him to school. I gave him his second dose that evening and within a 1/2 hour he started complaining his hands were burning. I tried to soothe him by putting ice packs and such on his hands. We woke up the next morning and his hands were not getting better. I called the pharmacy and spoke with the pharmacist and she said it sounded like an allergic reaction to the antibiotic, albeit presenting oddly. I called the doctor and they switched him to bactrim and added the azithromycin to his allergy list. His hands, knees, and toes/feet are being affected. The skin is coming off and although it isn't red underneath like all the pictures i've seen it is coming off like he was scalded. The doctors up here aren't the greatest and i am scared that they will miss this diagnosis. He has an appointment tomorrow morning and i have been doing my research on this and all other related disorders and SJS fits the bill except for the rash all over. Can anyone tell me if they had a mild case of SJS? Thanks!!
Sincerely, Michelle |
| Add Email to Story: | Yes |
| ID: | 100058
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Time/Date: | 11:10:35 AM PDT/ 09-28-2009 |
| Name: | Steve Harrison |
| Email Address: | EmailAddress@notprovided.com |
| Story: | I got sjs during my finals at university. I was 40 at the time. I had fllu and fever symptoms. I finished my finals in the university horspital. I then contacted my doctor who sent me to the local hospital. they took a look at me and told me I had flu. Fortunately, I re-visited my doctor,who had a student working in the surgery. He diagnosed sjs and I was hospitalized immediately. I had blistering in all soft tissue areas and a fever the continued for seven days. The symptoms eventually abated and after three weeks I was discharged. On a follow-up visit to the consultant I was told that they had no idea what caused sjs. Upon reading the information on your web site it occurred to me that during my exams I was taking copious amounts of benolin. That was over 20years ago it is interesting that all this time later I may have the answer that over the counter medicine could have caused it. Thanks for the information. |
| Add Email to Story: | No |
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