An unprecedented survey of more than 250 AMD patients
confirms the true facts about the disease.
Kansas City, MO (PRWEB) July 10, 2006 — A recent opinion survey sponsored by Macular Degeneration Support (MD Support), a leading non-profit patient advocacy organization, shows that a strong majority of people affected by age-related macular degeneration (AMD) do not think of themselves as blind, and they do not want the term to be used to describe their condition.
More than 90% of AMD patients surveyed in a nationwide survey during June 2006 do not agree with how they are often depicted by marketers, the media and fund-raising organizations. Even in the late stages of AMD, patients can usually function independently with the help of low vision devices. They are not, therefore, clinically blind. “Telling patients that AMD will cause blindness can seriously jeopardize their psychological health, quality of life and motivation to seek treatment and rehabilitation,” said Dan Roberts, MD Support director and author of The First Year: Age-Related Macular Degeneration (Marlowe & Co., NY. Sept 2006).
253 senior adults, all with AMD, responded to the opinion survey. Their length of time with the disease ranged from a few months to over ten years. The results suggest that 90.60% of people with AMD do not consider themselves to be blind, 92.62% know they will not go blind from AMD and 93.39% are averse to the use of the word “blind” in connection with their condition. These are convincing statistics that are now available for the first time to eye care professionals, patient advocacy organizations and public service agencies. “Hopefully,” said Roberts, “the message is clear and will be heeded.”
“More important,” he stressed, “is that people with AMD can use these findings to defend their position to those who tell them they will go blind. To dispense that kind of false information is irresponsible. It can have grave emotional consequences leading to serious depression and even thoughts of suicide. It also blurs the line between people who are visually impaired and people who are truly blind, a distinction which all governmental agencies, experienced AMD patients and especially blind people recognize.”
As one survey participant wrote, “When first diagnosed, the only word I heard was ‘blind.’ I have [since] learned that I am going to be visually impaired–never blind. I went through much pain and despair because of incorrect terminology. That was so unnecessary.”
The report (available in full at www.mdsupport.org/library/notblind.html) concludes that AMD patients need to arm themselves against being misinformed and misled. At the same time, it is important that they assist in the proper education of others by resisting use of the clinically inaccurate term ‘blind’ when describing their visual condition.
“The AMD community,” wrote Roberts, “must continue to encourage contributions to research and the importance of eye exams for everyone who is at risk for retinal disease. It must, however, find ways to emphasize those points without resorting to fear tactics and unsupported health claims. No one knows their visual capabilities better than the people who are actually living with AMD. They have now had their say, and it would be to everyone else’s benefit if they are heard.”
About age-related macular degeneration (AMD)
AMD is a progressive disease of the retina wherein the light-sensing “cone” cells in the central area of vision (the macula) stop working and eventually die. The disease is thought to be caused by a combination of genetic and environmental factors, and it is most common in people who are age sixty and over.
At its worst, macular degeneration will damage only central vision, which arises from the macular area, comprising less than 5% of the total retina, but responsible for about 35% of the visual field. This means that an affected person will find it difficult or impossible to read, drive, or recognize faces. The peripheral vision, however, is left untouched. Many affected people move about with no assistance at all and, with the help of both visual and non-visual devices, many lead independent, productive lives.
About Macular Degeneration Support, Inc.
MD Support is a worldwide non-profit public service organization incorporated in 1998 under section 501(c)(3) of the IRS code. Its mission is to provide information and support for people who are affected by macular degeneration and similar retinal diseases. MD Support is based on the Internet and also offers a public awareness program designed to reach people who are without Internet access. Founding Director Dan Roberts and most of the organization’s volunteers are visually-impaired themselves. Their work is supported and guided by a 12-member professional advisory board made up of leading doctors, rehabilitation specialists, and social workers. The organization’s web site (www.mdsupport.org) receives over 3 million hits annually, and its National Low Vision Support group is reaching more than 2000 “unconnected” senior adults monthly.