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Patients across the US Recovering from Stevens-Johnson Syndrome

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Denver, COWhile Stevens-Johnson Syndrome has proven to be a serious disease that can sometimes prove fatal, a number of people across the country are sharing their stories about recovering from the condition.

According to The Denver Channel, Emilie Nickoloff is currently training for an Ironman triathlon, a significant achievement considering she suffered from Stevens-Johnson Syndrome just four years ago.

"I had a fever of 104, and finally, we decided it was time to go to the hospital," Nickoloff told the news source. "We noticed there was a rash forming on my arms. It started to spread all over my torso."

Dr. Gordon Lindberg, the medical director of the University of Colorado's burn unit, explained to the news source that the woman's condition was most likely caused by an allergic skin reaction to a medication she had taken. In some cases, patients can even lose their vision, but Nickoloff's eyesight was spared through amniotic membrane transplants, the news source said.

"I woke up from a coma blind, and it took about a month to get my sight back," she said. "So people were telling me that I had burns all over my body, but I didn't know what that meant."

Lindberg explained that patients suffering from the condition are put into a medically induced coma because it prevents them from having to feel the intense pain associated with treatment. While Stevens-Johnson Syndrome is rare, Nickoloff said that she now wants to reach out to patients currently suffering from the condition in order to lend her support.

"I'll be talking with them and explaining my experiences and what it was like to come home and start the long recovery process," she told the news source.

In some cases, a specific medication is pinpointed as the root cause of the condition, as a Pennsylvania jury ruled last month that Johnson & Johnson must pay $10 million to the family of a young girl who took Children's Motrin and suffered burns and vision loss, two symptoms related to the condition.

According to Bloomberg, the drug company has also faced at least two other trials over allegations that it concealed links between the medication and Stevens-Johnson Syndrome.

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READER COMMENTS

Posted by

on
Hi out there.....I too have just suffered from sjs.
Trying to remain positive. Very hard.

Posted by

on
i had sjs from bactrim and had to be ventalated while i was in a coma and lost part of my sight i have constaint joint and body pain still have discharge from my eyes daily i am still having trouble walking i loose my breath all the time and have to depend on a free clinic with doctors that have never had to treat sjs before for medical i will never be the same and cannt return to work and was denied ssi and medical i cannt afford the medicine for my eyes and the doctors tell me to use over the counter pain meds which do not work i live in rockford ill is there any one that can direct me to some help please

Posted by

on
My daughter Jean was a vibrant, healty, socially active beautiful person until this awful disease struck her body and literally changed her life style and health. Now her life consists of lying in bed unable to move or use her limbs because all joints are locked down and waiting for help through the county system for inhome therapy to get her back on her feet. This is an awful disaster that has changed both our lives and we have been unable to get legal help to prosecute the doctor who gave her the drug that caused this conditon.

Posted by

on
HELLO,
I TO AM A STS-TENS SURVIVOR, AND WOULD LOVE 2 TALK WITH EMILIE NICKOLOFF ABOUT IT IF POSSIBLE. PLEASE EMAIL AT jpac50002001@yahoo.com WOULD LOVE 2 CONVERSE WITH OTHERS WHO ALSO HAVE BEEN THROUGH THIS HORRIBLE PAIN.

JEAN POWE

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