Mystery Illness- Stevens Johnson Syndrome/Toxic Epidermal Necrolysis

[Pesceangurl]

Thanks for posting this.

[MeTaLISaWeSoMe95]

Ive had this twice now. it hasnt affected me to bad though. minor eye damage and some hearing damage. my case was on the inside of my body not the outside. i didnt have skin damage on the outside but it greatly affected my organs and almost killed me. Im happy to see that she got throug this and continue to wish her good luck. i hope you never have to deal with it again as i have.

[MrJoAnnM]

She should go to the Boston foundation for sight and get scleral lenses. They have changed my life. She can then throw those sun glasses away!!

[KarylBell]

@MrJoAnnM Believe it or not, she did. Most people I find out wait until the last resort to get the lenses but Karyl went in June and was fitted. Then she went back in July for the SJS Week at BFS and had some adjustments made. The lenses have allowed her to regain a lot of what was lost due to the SJS/TENS.

[Linxie1964]

I know how awful this is for you. I was diagnosed with severe SJS/TENS on July 27, 2009. On Monday (in 3 days) I will be having my 18th surgery to try and repair/undo the damage that was done to all of my nerves, my arms, legs, hands, and feet. You are so lucky to have recovered so quickly... I wish you the best, and that this will never affect you again...



[KarylBell]

@Linxie1964 Fortunately, Karyl has pushed through a lot of the physical appearing issues but she suffers from a lot of unseen things. Like nerve damage in her mouth, issues with body temperature regulation, light sensitivity, chronic cough and the list goes on and on....we can all pray that no one ever has to go through this again. Sue (Karyl's mom)

[MeTaLISaWeSoMe95]

@KarylBell oh and forgot to mention this happened 4 years ago when i was 12 years old and 4 years before that aswell.

[cherilynnoneill]

Karyl you are an amazibg girl! Thank you for all you and your mom do to promote SJS! Your positve attitude is certainly one of the things that will continue to pull you through every situation!! :)