zToxic Epidermal Necrolysis

[Ahavah]

Hi! I am a 23-year old woman who unfortunately suffered from Toxic Epidermal Necrolysis, the highest "level" of Steven Johnson's Syndrome, last December (2006).

While the condition, which I basically describe to lay-people (and myself!), is a full body chemical burn, caused by an allergic reaction to a prescription drug ,that affected my entire body and left me in a burn unit for a month, nothing prepared me for how it would effect my eyes.

My epithelium never quite grew back; my right eye is so damaged it never "wants" to stay open; my left eye is usable as long as I physically hold it open with my fingers (but it is still extremely photosensitive); I am considered legally blind and can no longer drive; I have "sand-paper" eyelid syndrome because my membrane mucosa turned rough, I have scarring on my my conjunctiva, and I have lost the ability to produce normal tears in both eyes.

Needless to say, my eyes hurt all the time and that in itself is incredibly yucky.

I use lots and lots of drops: Restasis, OTC Refresh products, steroidal FML ointment,Systane, Optive, Blink, etc.

I hope this site can help me obtain and give out support of our common, yucky condition and help me get advice about saving money on eyedrops, eye-wear that can help with photo sensitivity and sensitivity to wind, irritants,etc (ouch!) and new treatments. Right now, I am really excited about Scleral lenses.

Thanks!

[dianat]

Ahavah,

You are probably the ideal candidate for scleral lenses from the Boston Foundation for site.

http://www.bostonsight.org/patients.htm

http://www.bostonsight.org/

Many Stevens-Johnson's patients have found comfort in sclerals from BFS. Please, do the research. It's an expensive treatment, but there is financial help available.

My best to you.

Diana

[Ahavah]

The Boston Foundation for Site

I have never heard of BFS before. How are their lenses and methods different from Dr. Janis Cottor's at the Parkway Eye Institute in Revere, MA? I consulted with Dr. Cotter, and she didn't mention BFS; I certainly hope they're not in competition! How can I do more research on Scleral lenses in general and these two facilities in particular? Thanks!

[Lucy]

I believe Dr. Cotter was trained (or used to work for) the Boston Foundation for Sight and now has her own practice. That does not mean they are "in competition."

You can find the Boston Foundation for Sight at Bostonsight.org.......
Their website is quite detailed in information about their organization and work.

? I consulted with Dr. Cotter, and she didn't mention BFS; I certainly hope they're not in competition! How can I do more research on Scleral lenses in general and these two facilities in particular? Thanks!

What did we ever do without the internet? There you have it, you'll find out pretty much everything you need to know. You say that Dr. Cotter "did not mention Boston Foundation for Sight." There is nothing odd about that. When I see a new doctor, they do not tell me about the other docs of their specialty across town!

Good luck in your search! You don't say if you live in the Boston area, but if so, you are lucky to have different options.

Lucy