A Stevens Johnson Syndrome story

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. However my eyes were greatly affected and I still have trouble with photophobia, dry eye syndrome, severe corneal scarring and cataracts. I see a lot of different specialist to treat the aftermath. Currently seeing several eye specialist to treat all my eye problems. A lung specialist as I have chronic bronchitis and reactive airway disorder. I have yet to find a doctor who truly knows and understands SJS. It's a condition that affects every organ of your body and yet there isn't one specialist that I've found.