Steven Johnson Syndrome Survivor
I had Steven Johnson Syndrome when I was a kid and even now 28 years later I’m encountering more complications because of it. Specifically my eyes, the dry eye aspect is kicking in full force. The chemical composition of my tears was permanently altered thanks to the scarring but at this age I’m REALLY experiencing the dryness. One of my tear ducts is scarred closed. Oculoplastic surgeons are wanting to do surgery to correct the distichiasis on all four of my eyelids. Lashes grow in the wrong directions and on the inner part of my lids which scratch against my eyes. I’ve gotten on through the years just manually plucking out offending eyelashes. The dry eye has gotten so bad that I have to wear a bandage contact to sleep every night to keep my eyelid from sticking to my cornea and tearing it. I am trying restasis as well to see if it will help but I know results can take months to see. If you or someone you know had SJS, are they experiencing similar eye issues and how did they overcome?