I am a Stevens-Johnson Syndrome (SJS) survivor and an 8-year veteran of the Scleral Lens from the Boston Foundation for Sight (BFS). I have been reading many of your posts over the last couple of days, and I would like to share my story and experiences as well..
I was a perfectly healthy 14 year old, and had just started my freshman year of high school when I was ambushed by SJS. The cause is still unknown. I'm sure you can imagine how ABSOLUTELY horrid and life changing this experience was, especially at a time in life when everyone, healthy or not, experiences bodily/hormone changes that they can not control. After a full month in the hospital (2 weeks of which were spent in Intensive Care) I was finally stable enough to be released. I consider myself extremely lucky to not have received any internal organ damage/scarring from the SJS, however my eyes are a completely different story. As a result of the SJS I have permanent scarring of my inner eyelids, severely decreased tear production, meibomian gland destruction, and blepharitis.
Within the few years following my "recovery" I passed through numerous ophthalmologists and treatments. I've had punctal occlusion performed on both eyes and when I was 16 I had a membrane graft surgery performed on my right inner eyelid at the Mass Eye & Ear Infirmary in Boston. Unfortunately, I don't feel that this major surgery (my eye was sewn shut for a week to heal) helped me all that much as I continue to have the same problems to this day.
Around the same time I discovered the Boston Foundation for Sight and the Scleral Lens. I consider this an enormous blessing. If it were not for this lens I would not likely have completed high school on time, and I would not likely have attended and completed college. Although I do have flare-ups and still continue to use drops frequently to wet the surface of the lens, I can't (and don't want to) imagine where I would be today without them
I'm 25 years old now, and it still amazes me when I think that I've lived with this eye condition for over 10 years. No, it has certainly not been easy, and yes, I certainly feel frustrated and helpless at times, but I truly feel that this experience-this hardship-has made me who I am today. It's taught me from a young age what it feels like to have a disadvantage and something that is virtually out of your control no matter what you do to fix it. And I've had to struggle so much to accomplish things that would have come so naturally had I been perfectly healthy.
In some ways I think that it was best that I had SJS at such a relatively young age with very few responsibilities and my parents to take care of me. Plus, I've had time to adjust to my eye condition and soon it will be what I've known for the majority of my life. However, at 25 years old, as I enter this new phase of my life, "true adulthood," I'm starting to get really scared. I'm scared about all of the new responsibilities that I have and the unprecedented experiences that I will have to deal with with my eye condition.
I am hoping through all of your stories and advice that this forum will help me with all of the changes happening in my life and with finding new ways to live as normal a life as possible with a debilitating eye condition. I am also hoping that I can offer my own advice and experience to help others going through the same or similar things that I have gone through.
Thank you for taking the time to read my story, and I hope that we will have the opportunity to help each other some day soon.
Wishing you a "good" eye day,