My son was diagnosed with Keratoconus when he was in college. I had never heard of it and there was not much literature on it. I found the Discovery Eye Foundation on the net and was able to educate my son and myself on the condition. The foundation continues to keep us updated on the progress being made and gives up to date information about how to treat the disease. We are very grateful to all associated with this foundation.
I was referred to Discovery Eye Foundation's blog by someone who understood that their information would be helpful to me. I have a family member dealing with macular degeneration, and I was just looking for information and people to talk to. Their staff is incredibly compassionate, resourceful, and informative, and I'm greatly appreciative for all of the help they've provided me with!
The Discovery Eye Foundation supports eye research for blinding eye diseases. Its efforts in keratoconus and macular degeneration eye research make the Discovery Eye Foundation a critical component in progressing against these blinding diseases. These innovative research areas include stem cell retinal regeneration, age related macular degeneration genetics, and corneal transplantation and scarring. The Discovery Eye Foundation's work is vitally important to the understanding of the health of the eye. Its website www.discoveryeye.org is a valuable resource for people dealing with eye disease. This is an exceptional organization which deserves the highest praise and support.
I was diagnosed with keratoconus over 10 years ago. Every year my condition worsened, and my ophthalmologist did her best to fit me in new contacts each year. It has been a struggle, and I eventually could no longer drive at night at the age of 48. The DEF newsletter helped me be informed about this condition and about the corneal crosslinking (CXL) study. This information was so valuable to me as I knew very little about keratoconus, how it was treated, and the status of the study. Because of my age, I wasn't a candidate for the (CXL) study until last year. I had the procedure completed in both of my eyes 6 months apart from each other. Being part of the study took lots of time, patience, and many appointments; not to mention having to live and not being able to drive without my medically necessary contacts for several weeks before and during recovery. But because I was better informed, I felt confident that the CXL procedure was the right choice for me at that point in my life.
DEF has provided me with valuable and timely information about treatment options, lifestyle adaptions, dietary suggestions, and more over the course of the 15+ years I have had AMD. It has helped make an informed patient who can interact intelligently with my doctor about my condition. I have achieved a good perspective and much peace of mind about having AMD largely thanks to DEF.
Review from Guidestar
Discovery Eye puts out a very informative newsletter a few times a year. Judy Delgado has consistently responded promptly and thoroughly to requests I have made for info about macular degeneration treatments, etc. She runs support groups in the LA area that are very helpful for individuals with AMD and their family members. They helped my Dad, who had AMD, and have helped me, with early stages of AMD, a lot.
I am very grateful to Macular Degeneration Partnership , which allows to not feel lonely people with wet AMD.
Patients are always interested if there are new treatments of their illness. I do not live in the U.S. and I can not take part in various activities organized for patients. But Macular Degeneration Partnership helps us to keep abreast of new research in the field of treatment of wet AMD, eliminating the need to look for this information on different sites on the Internet . It also helps not to tire the eyes and save some vision. And the stories of those who do not give the disease , moral support . Thank you again !
I have been attending the monthly meetings the Macular Degeneration Partnership gives at my local Senior Center for the last 4 months. I was diagnosed with AMD two years ago and then Wet AMD in my left eye four months ago. These meetings have been life changing as they have enabled me to understand the condition better and to have a more positive attitude toward it. I have received an unbelievable amount of helpful information as well as having the opportunity to meet other people with AMD and share our experiences. The guest speakers have also been very helpful.
Thank you Macular Degeneration Partnership and Discovery Eye Foundation for making such a difference in my life.
I have had macular degeneration for some time now and the Macular Degeneration Partnership has always kept me informed about the latest treatments and what the results are, which gives me hope that I might be able to use a different treatment other than the shots that I get now directly in the eye. They are costly and very uncomfortable, I don't like them at all but at least it has slowed the disease for now.
I live in France. The Macular Degeneration Partnership has been a life saver for me! The modest contributions I have been able to make, qualify me only as a very small donor; but my gratitude to this association is huge! They gave me support, information and good advice every time I needed them, helping me overcome very difficult periods in the course of this cruel illness. And very importantly, they made me feel like I had not only qualified, sympathetic and readily available advisors, but also good friends overseas! The mere thought that they are there, just an email away, is very, very comforting. I AM glad of this opportunity to express publicly my immense gratitude!
Monique van de Stadt-Kamber
My father has macular degeneration. I a grateful for the services provided by Discovery Eye Foundation. I always check your email newsletter as soon as it arrives.
I am grateful for the Macular Degeneration Partnership. I depend upon it to keep me up to date with the latest developments in the field. Otherwise I would be lost for reliable and useful information. Again, I am most appreciative of this service.
I was diagnosed with wet & dry macular degeneration two years ago and was devastated I do have sight loss in the eye with wet, because of the cost i was afraid we would have to choose between loosing our home or my eyesight because of your connection with Macular degeneration partnership i receive $ to help with my co pay and have regained some loss in that eye I sincerely want to thank you and your donors for all the help you have helped someone who really needs it and is grateful beyond belief Evelyn
I DISCOVERED I HAD MACULAR DEGENERATION ABOUT 2 YRS. AGO. I HAVE HAD SHOTS IN BOTH EYES. I've BEEN ON DIALYSIS FOR 214 YRS. & I'll TAKE THAT ANY DAY TOTHIS PROBLEMATIC EYESIGHT:) I TAKE pRESERVISION & I APPRECIATETHE COUPONS!!
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!
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
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.
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 firstname.lastname@example.org