When first diagnosed with keratoconus in 2003, I was scared and didn't know where to turn. Would my work possibilities dwindle? Could I drive at night? Would I lose my sight? NKCF provided comfort, resources, and hope. The newsletters and message boards provide everything from moral support to practical support (the best sunglasses for KC patients, ways to explain KC to others, travel for RGP lens wearers). I found my first KC specialist through NKCF and when my health coverage changed, they were there to help me locate a replacement. When I needed a letter that explained KC to my insurer, they were there. NKCF is professional and dedicated to our little-known diseases. I can't recommend them too highly.
I am 23, and was diagnosed at age 17 with Keratoconus, a degenerative disease of the cornea which causes poor vision and makes vision correction with glasses and contacts very difficult. It is the number one reason people have cornea transplants in the United States. At the time when I was diagnosed the optometrist knew very little about my disease (occurs in 1 out of 2,000 people) and made me scared. The first thing I did was go home and look up the disease and I found the website for this organization. They were and continue to be the best resource for people like myself looking for resources, information, and support. This past weekend, (June 2010) I attended a conference hosted by Discovery Eye and National Keratoconus Foundation. The conference was free to attend and had many of the top doctors in the world, speak. After six years of living in fear that I would not have option as my disease gets worse, I am finally at peace. I now know what my options are and what is currently in the research stage. I was also able to meet (for the first time) other people who have KC, which was amazing. Something else worth noting is the email discussion forum hosted via this organization. Patients are able to communicate with other people who have KC as they search for answers. This provides a great sense of community and is an amazing resource. I cannot express how thankful I am for this service alone. I highly recommend the National Keratoconus Foundation to all. *Please forgive any errors in this review. It is not easy for me to see the computer screen clearly.
The Discovery Eye Foundation has played a key role in so many of my patient's lives-- Particularly those with keratoconus and macular degeneration. The sight saving research that DEF has supported for over 40 years has been very important to those with corneal and retinal diseases.
I have had keratoconos for nearly 50 years and this organization has been a godsend for information, counsel and direction as my deseace has progressed. After a corneal transplant I found their literature to be the most complete and easiest to access and use that existed. Their research into a range of eye issues seems to be at the forefront of progress for these conditions and there ratio of operating expenses to proper use of their funds seems to be very high.