Our son was diagnosed with keratoconus in June of 2011. We had never even heard of this condition before. The National Keratoconus Foundation was an essential tool in learning about this disease, researching options for our son, and providing him with the best possible care.
The Discovery Eye Foundation has been a great resource for learning more about a condition I have - Macular Degeneration. My daughter signed me up to attend a Vision Seminar conducted at the UC Irvine Campus. It was very informative, and we obtained additional valuable resources that assists me to see things better. I am very greatful for the extensive research they share with all of us, and I enjoy receiving their newsletter keeping me abreast of new information they have discovered in their research.
Discovery Eye Foundation has been a reliable source for information about my disease, the things I can do as part of the treatment to address the problem and, the latest medical research in treatment advancements.
I have been receiving useful info from DEF for many years now. They review recent research on treatment and provide helpful general advice for individuals and family members trying to live comfortably with serious vision problems. They have also responded to individual requests for information and/or help in a timely and supportive manner.
Tell your story here and help others understand this charity When I was diagnosed with Keratoconus a year ago, I researched and found this great organization that gave me all the support and information I needed to continue to live a normal life. They continue to give as much information as they can to continue my understanding of the disease including new research methods, tips, and ideas of how to cope with this disease.
When I was first diagnosed with Keratoconus 14 years ago, I've never heard of the disease. My eye doctor gave me the NKCF booklet and I logged onto their website. The newsletters have been very informative and the KC link has served as a helpful resource—many of my questions were answered by people who have experienced my situation. In fact, when I had my transplant 2 years ago, I was able to compare notes with someone who's surgery was days before. We created our own little support group... something that wouldn't have happened without the KC link.
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.