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Which advice would you give to someone who has just been diagnosed with Stevens Johnson Syndrome?

Advice for the newly diagnosed with Stevens Johnson Syndrome, written by people who have lived it. What they wish they had known on day one.

Stevens Johnson Syndrome advice
3 answers
Make sure you have a good dermatologist and ophthalmologist who have dealt with stevens johnson syndrome before and if you feel they're not giving you the right treatment or taking the seriousness of your problems properly ask for a second opinion straight away

Posted Feb 24, 2017 by Sophie 1150
Translated from spanish Improve translation
A lot of force and think that it is a superhero, and that the worst step.

Posted Oct 4, 2017 by Yolika 2000
Translated from spanish Improve translation
You must have Faith, fight and take all of your strength to defeat the disease.
Be patient in your recovery and to follow all medical instructions
Take care of yourself, if your the same, because no one else will. To meet you will help you discover that there are no limits and not to go back to get sick.
Have fun, make awareness of these live, love, embrace, cherish every detail of life.
Conveys your experience and help others

Posted Oct 16, 2017 by Karen 3550

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Stories of Stevens Johnson Syndrome

STEVENS JOHNSON SYNDROME STORIES
Stevens Johnson Syndrome stories
I got SJS/TENS from taking lamictal. I was in the ICU burn unit at Grady hospital in Atlanta for 7 weeks. 5 of those I was in a medically induced coma. I lost 90% of my skin, all my hair and fingernails. My skin has come back mostly without scars. Ho...
Stevens Johnson Syndrome stories
I WAS IN A CONSTRUCTION ACCIDENT AND BLEW MY KNEES OUT WHERE THEY WERE BONE ON BONE I RECEIVED 3 INJECTIONS OF EUEFLEUX SHOTS AND AFTER THE SECOND SHOT I BROKE OUT WITH BLISTERS AND HIVES NOBODY KNEW WHAT THEY WERE I WAS TREATED FOR THREE AND A HALF ...
Stevens Johnson Syndrome stories
I had gone to one hospital with a severe rash, I met a physician who know exactly what this was. I was transfered to the Burn Unit, where I received an active coat treatment and my body wrapped in guaze. With IV medication and constant lotion applied...
Stevens Johnson Syndrome stories
My granddaughter had TEN a year ago. She had a rash that was diagnosed as Scarlett fever. After 24hours she wasd admitted to our local emergency ward. She was diagnosed with SJS within a few hours and transferred to Evelina London. The care she had t...
Stevens Johnson Syndrome stories
Callum had SJS twice in 2013 at the age of 7. We still have no definite trigger 

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