I have found the Voundation to be an invaluable ally in my quest to provide information to patients dealing with KC. I regularly refer them to the website as THE most up-to-date source of information available. I have been very grateful for the referrals I have received as well. Randy J. Esptein, MD
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.
Since then I have had the opportunity to interact with many people seeking support and offering support to those with keratoconus. I have had the opportunity to learn and educate; to build relationships and to publish. Much of this would not have been possible without the broad base and input that the worldwide fellowship sponsored by the NKCF provided. The power of the NKCF is multiplied by an inestimable factor when the number of other support sites quoting and linkiing the NKCF site is appreciated.
When I was diagnosed with Keratoconus in 1998, I never heard of keratoconus before and had no idea what it was. Searching in the internet I found the NKCF. They not only answered my questions and concerns, but with the letter they send to my insurance I was able to obtain approval for payments of the office visits, treatment and contact lenses.Their newsletters keep me inform of the newest treatments and technological advances to treat keratoconus. which in turn i discussed with my doctor. The last contact lenses I made are using one of those cushion lenses and they are much more comfortable in addition to reduced the scars I had on one of my eyes while improving my vision.
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.
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.