In the early days of my KC diagnosis, before the KC stabilized, the regular NKCF newsletters/forum provided much needed information and support. Discovery Eye Foundation/NKCF provide a valuable and much need resource for a disease that does not get as much visibility as other more obvious and prevalent conditions. KUDOS!!!
Hi, My name is Lilian and was diagnosed with Keratoconus at 22 years of age. For any sufferers of KC and their families, it can be a rather trying experience. It's been about 10 years since I found NKCF while browsing the web for information about KC. I registered for the forum and received great support and feedback from participants. A recent relocation to a new city left me without a clue about finding a specialist. The efficient and easy referral service offered by NKCF pointed me into the direction to some of the best, most friendly and professional, MD and Optometrist (at a University Hospital in Jackson, MS) who fitted me with perfectly fitting Rigid Gas Permeable lens on the first try. I am so appreciative of the tireless efforts of forum and referral coordinator C. Warren. We are lucky to have her's and NKCF's 100% commitment to the holistic care, treatment and research of KC. Kudos to NKCF!
As a person diagnosed with KC, the NKCF forum on their websitea allowed me to read what others with KC have gone through and are experiencing as well as learn about advances in treatments for this condition.
NKCF is a wonderful part of this non-profit. I applaud this organization's ability to reach patients with this condition who can not find eye doctors with the skills needed to help them see. I just finished fitting a young adult who found me through NKCF. This patient can now see well enough to drive with an unrestricted license; a world of difference for this young parent who works full-time! I look forward to the continued efforts made on patients' behalf by NKCF, especially the work with insurance companies and corresponding legislation to try to get this affordable care covered that allows working adults to remain productive and provide for their families.
I'm Danny prem from India. I'm really happy to have link with this organisation as I live with keratoconus with more than 6 years in a country with less knowledge about the disease and NKCF's newsletter helped to know more about my problem and also boosted my confidence to face this world.. thanks for giving a hope for new life
The NKCF Discovery Eye Foudation is a very practical way to get tons of information about keratoconus.
The monthly newsletter presents the latest development for treatment alternatives. It's also possible to get in touch with other people diagnosed with keratoconus to learn about their experience with different treatments. Overall very pleased with the work of the NKCF Discovery Eye Foudation.
I was told I had kertaconsis in 1990 wen i was 26 and i had 3 small children under 6. It was the most devastating you I can't at the age of 26. A full time working mom wife. The doctor told me the name of the disease I went home and read up on the disease that I had. I recall being scared and ASHAMED aashaking t
This foundation (NKCF) has provided me great information and support. Keratoconus is not a well known condition, it is mostly misdiagnosed. Thanks to this foundation its information is disseminated to patients, families and even ophtalmologists!!! It also provides great service updating the latest research and treatments through the website and newsletter; promotes corneal donation, seminars, research and great support to patients by sharing common experiences. I am very thankful to NKCF. It has been very helpful to us!
I have had keratoconus for more than 30 years. This Foundation provides a great service by disseminating the latest information on treatment and research for this eye disorder through its Website and newsletter. The Foundation also offers a discussion board for patients to be able to ask questions, share information, and find support from others with similar experiences. It is a much needed resource for information and support.
When I was first diagnosed with Keratoconus, after having received several misdiagnoses, I went to the Internet to do research. My most positive experience has been with the NKCF, whose website and newsletters have been truly useful and informational. I was particularly impressed when I announced to the newsletter that I would be having a corneal transplant. I received immediately from Cathy Warren a booklet concerning the whole procedure, including factors which my surgeon didn't think to tell me. I was touched and pleased with her prompt response. The procedure went as described, and now I see well enough to drive with glasses.
Hi My name is Antonio Mendoza, 46 old, I live in Mexico (sorry for my English) I have Keratoconous for +20 years.The reason for typing this message is because I want to share my experience trying to control it. In my case, I have periods with critical sensations in my both eyes. In that moment It has been greatful to use soda can soda cold direct to my eye for a short moments. also I have access to traditional Mexican herbal medicine and with some herbals I have the possiblity to manage my eyes when I have crisis.It has been helpful for me because I have the possibility to stabilize the keratoconus. I share this info in order to help others and also try to give some ideas for making new studies. Regards. Antonio email@example.com
My name is Sandy. I am a 52 year old female. My mother has AMD and she is 86 years old. She is blind. I thought I too had AMD. I started having vision changes in my left eye this past summer. I felt dizzy and nauseated. I also had a migraine headache the day my vision changed. I noticed that my left eye had a gray spot in the center of my vision and words I tried to read were wavy. I also noticed that doorways and window frames were wavy. It was like being in a fun house with those crazy mirrors. The scariest thing was when I closed my right eye and looked in the mirror. It looked like my face was dropping or melting on the right side. I looked like a monster. I went to see a doctor at University of Michigan. He didn't think I had AMD, but diagnosed me with Chronic Serous Chorio Retinopathy. I had laser surgery done. It helped improve my vision only for about a month. It is bad again. I am scared that I will lose my sight in both eyes. I wonder if I too really have AMD like my mother.
I am only 61 and have been dealing with wet Amd for two years. I called Discovery Eye Foundation and was able to speak with Judy Delgado the very same day. She listened and was able to confirm that the course of treatment my doctor is using is standard protocol. She also gave me the name of a doctor at Casey Eye Institute who would be a good physician should I choose to get a second opinion. After the conversation, I felt very reassured. It has been difficult dealing with this disease at such a young age. It was so nice to talk to a knowledgable person who showed compassion. They are providing a great service.
When I was diagnosed with Keratconus the foundation provided me with the information I needed to really understand what was going on with my vision. Hearing from others has been a great source of support for me. i feel so much more well equiped to deal with this eye disease with thier help.
My father is almost blind from Macular Degeneration. Recently I have found out that his sister is also showing symptoms, and I also have beginning signs of developing AMD. This organzation has become a valuable resource for me, to get the information I need to keep my own vision healthy, and to understand the implications of having AMD. Through this organization, I have been able to participate in research regarding the genetic factor in AMD, which is important to me since it clearly runs in my family. I feel very fortunate to have this wonderful resource to help me and my family!
I have been diagnosed with Keratoconus for 41 years. As new developments and proceedures have recently emerged, the NKCF website has been a saving grace. I am currently 61 and through the interchange of others with KC and physicians and contact fitters in the field, I am able to discern what treatments have been successful as well as others who have have similar side effects to new contact lenses.
AMD provides the latest research and care information for macular degeneration with timely emails and newsletters. When I've asked a more specific question of the director, Judith Delgado, I get a very prompt, informative, caring response. I've been helped a great deal to handle the AMD diagnosis in my life by this group, and have recommended them to others over the years.
Thank you to NKCF for their great newsletter and website. Being a Keracatonous patient I have learned that there are not very many resources, and their website/newsletter gives me the resources and research results are extremely helpful to me.
My husband has had keratoconus for 25+ years and the National Keratoconus Foundation has kept him informed over the years. Their sample insurance letter helped get him medical reimbursement for his expensive hard/Rose K contacts ... probably common these days, but the NKCF lead the way to getting this much needed financial assistance.
I find the National Keratoconus Foundation a great organization. They help people finding professionals that can help them manage their disease through contact lenses and other options. They keep up to date on research, and act as a clearing house of information for their clients. They have very helpful booklets that are in plain language on Keratoconus and Corneal Grafts that I give out to my new patients who have this disease. Although I discuss these options with my patients, I find it very helpful to have a booklet that also has these options in writing that they can refer back to. They are also great booklets for family, and friends so that they too can understand what Keratoconus is all about. They publish newsletters, and maintain a great chat site. They also hold seminars. Their administrator is excellent and very dedicated. I personally find the chat site interesting. It has given me a lot of insight into how patients assimilate the information they are given and what questions they often have, and in what areas there is often confusion.