The History of AMD and the Macular Degeneration Partnership
Age-related macular degeneration (AMD) is a progressive eye condition affecting as many as 15 million Americans and millions more around the world. The disease attacks the macula of the eye, where our sharpest central vision occurs. Although it rarely results in complete blindness, it robs all but the outermost, peripheral sight, leaving only dim images or black holes at the center of vision.
?When I started working in ophthalmology in 1968, the diagnosis was ?senile macular degeneration,?? says Judi Delgado, executive director of the Macular Degeneration Partnership (MDP). ?Most often, doctors noted it in patients? charts but didn?t bother to inform the patients, because they didn?t know much about why people developed it and had no treatment to offer for 90 percent of the patients. Why worry them??
Treatment and Prevention
AMD was not well-understood until recently, when the causes and risk factors were determined. Risk factors include family history, smoking, obesity, sun exposure and other lifestyle factors, such as poor diet, high cholesterol and lack of exercise. This determination has led to research that is identifying more pathways for the disease, as well as providing more ?targets? for treatment and prevention.
?We still don?t have a treatment for the 90 percent of people with the disease, who have ?dry? AMD, but now we know what individuals can do to reduce the chance of getting it,? Delgado says. ?In addition to modifying lifestyle factors, some people benefit from vitamin supplementation that can slow progression by 25 percent and vision loss by 19 percent. Current clinical trials could lead to treatments for dry AMD in the next five years.?
For a long time, the only treatment for the 10 percent of people with ?wet? AMD was a thermal laser, which caused immediate vision loss, in the hope that the eventual vision loss would be less than without treatment. Thankfully, treatment for wet AMD has evolved. In 2000, photodynamic therapy (PDT) was introduced, where a light-sensitive dye injected into the eye seals off the leaking blood vessel when exposed to a cold laser light. Unlike the old thermal laser, it targets only diseased tissue and doesn?t damage healthy tissue.
Since 2004, eye injections have become the standard treatment, slowing progression ? and even improving vision in some. Lucentis or Avastin are usually given monthly for three or four months, and then as needed. The most recent treatment, Eylea, is given every other month.
Macular Degeneration Partnership
An educational program of The Discovery Eye Foundation (DEF), MDP was founded to educate and support people with AMD, in memory of Dr. Henry Nesburn (father of DEF President/Medical Director Dr. Anthony Nesburn). Henry’s wife, Lilian, made a sizable gift to start MDP (so named in 1998), which has grown from a small support group and the occasional seminar to an international organization.
From day one, MDP has provided trustworthy, up-to-date information for people dealing with AMD. ?We have always prided ourselves on listening to what people need and want from us as an organization,? Delgado says. ?For instance, when support-group attendees asked for more reports from physician conferences ? in language they could understand ? we made an effort to attend more of them, and distill and disseminate the most relevant and useful information.?
MDP has become known for the information it shares ? including highlights from important meetings, as well as updates on research, treatment, clinical trials and assistive devices ? in multiple formats accessible in a variety of ways.
On the Web
When www.amd.org launched in 1999, there was very little online information about macular degeneration. MDP?s website changed all that and continues to be a trusted source for comprehensive information about the disease, treatment, research, prevention, caregiving and low-vision rehabilitation.
From a few hundred visitors when it launched, it is now visited by more than 27,000 people in 159 countries every month who come for consistently reliable, easy-to-understand AMD information. It is also a source of hope for many, such as the woman who recently sent this e-mail:
?You have given me hope, and what a difference it?s made in my attitude. My vision is so very precious to me, and I pray daily for a cure. I am thankful I found you on the web.?
By Phone
At first, the partnership?s toll-free phone number provided a menu of options with recorded information. ?It didn?t take long to realize people wanted a more personal connection,? Delgado says. ?Every person has a unique story and individual needs that just can?t be met by a recording.?
Since 2000, the ?warm line? has been answered directly by a knowledgeable person, helping approximately 1,000 people each year. From people looking for advice on caring for loved ones, to patients seeking physician referrals, to newly diagnosed seniors hoping for a knowledgeable yet friendly voice to help them understand what they need to do next, callers are helped with a wide variety of issues.
For many, these conversations are truly life-altering. A recent caller sent this thank-you note:
?It seems my biggest hurdle with this condition is convincing people that my experiences are real. ? Sensing your empathy did wonders for me, and the information and instruction you provided has duly marked my course forward. I am scheduled to visit a specialist next week. By then I will be equipped with tips and an overall increased knowledge base: Perhaps I won?t feel so vulnerable and guarded.?
In Person
The MDP AMD Support Group at Cedars-Sinai Medical Center started in 1995, moving to its current home at the Beverly Hills Library in 2006, where it is held on the fourth Tuesday of every month. A second support group, funded by the Santa Monica Lions Club, was started in Santa Monica (second Tuesday of each month) in 2012, with a third in Huntington Beach (second Monday of each month) beginning in 2013. For more information on support groups, go to amd.org.
By E-mail
Since 1999, AMD Update has reached thousands of patients, caregivers, family members and professionals. This e-newsletter is free and includes articles on treatment, research, clinical trials, living with AMD and low-vision rehabilitation. Each month, AMD Update is sent to 8,000 people around the world, including a group of people in Germany, who sent us this e-mail:
?Thank you for all your newsletters. Our small group of people suffering from macular degeneration is very keen to hear the latest news from the USA. We think there is more research done in the USA than in Germany. Thank you very much.?
Perhaps the work of MDP is best summed up in the story of a woman who contacted the organization recently. She had been to several eye doctors before reaching out to us:
?I knew that if anyone could tell me the straight story, it would be you. You have the most recent and best information. I knew I could count on you.?
Posted February 2014