POHS

Presumed Ocular Histoplasmosis Syndrom. I'm one of the lucky few that have this condition. Rather than bore you with details, I'll let professional eye care sites bore you:

http://www.emedicine.com/OPH/topic406.htm
http://www.nei.nih.gov/health/histoplasmosis/

Anyway, lost center vision in my right eye 13 years ago, almost lost in my left eye this summer. Thankfully there's a new treatement and my left eye is back to 20/25 vision. The catch is, the treatment isn't approved by the FDA, and the condition is so rare, the chances of the FDA even looking at it for POHS is remote, so insurance won't cover it. It's not hundreds of thousands of dollars, and in my case we're lucky to be able to afford the treatments. But I bet some can't, especially some who can't work because of the condition. No job, no insurance, and even if they had insurance, no coverage. BCBSIL covers the doctor visits for me, just not the drug itself. Again, I'm lucky, and blessed (thank you Lord). Been thinking, wonder if I can start a charity to cover the costs for folks who can't afford it? Don't know were to start, there's services that you can pay to help you, but kinda defeats the purpose, want any $ to go to people who need it, not some service. Anyway, just thinking about it, don't even know if there's a need, maybe there's only 2 people out there who can't afford the procedure anyway.