People with age-related macular degeneration are pleased and relieved to see the word “blind” on its way out as a description of their visual condition.
The word “blind” is becoming increasingly less associated with age-related macular degeneration (AMD), thanks in part to awareness efforts by MD Support and the conscientiousness of other leading organizations around the world.
Until last fall, according to Dan Roberts, director of MD Support, Inc. and author of The First Year: Age-Related Macular Degeneration, nearly all media releases about AMD included statements such as “AMD is the leading cause of blindness among senior citizens.” After an ambitious grass roots campaign by MD Support, Roberts happily reports that the majority of press releases and media broadcasts are now using the more correct term “vision loss.” “It’s not that ‘blind’ is a bad word.” said Roberts. “It’s just that it doesn’t apply to people with AMD, who are more accurately described as having vision loss, low vision or visual impairment.
We encourage AMD patients to learn blindness skills to help compensate for loss of central vision, but we also emphasize the importance of maximizing and enjoying vision that will never be taken way by the disease. Telling a patient he or she will go blind from AMD often leads to serious depression and even suicide. The World Health Organization estimates that many of the 850,000 suicides each year can be attributed to depression. I can’t help but think how many of those lives could be saved with accurate information and support.”
Roberts, who is visually-impaired himself, has spent the past five months tracking virtually every public article and news broadcast about macular degeneration appearing on the Internet. As of November 10, 2006, he had found that 58% were still using the word “blind” as a description of AMD. As of March 10, 2007, he reports that the ratio had dropped to 42%, and the trend is continuing downward. This is good news for the large majority of AMD patients, who–according to an MD Support poll taken in October of last year–do not think of themselves as blind and do not want the term to be used to describe their visual condition.
Roberts believes from personal experience that a person who thinks blindness is imminent will not be as likely to seek proper treatment and low vision rehabilitation that could greatly improve quality of life. The mission of MD Support, therefore, is to ensure that all patients are aware of the help available to them and that AMD is not the end of the road. This mission is carried out through the organization’s 800-page website and the beginning of its second year of operating the International MD Support Group. The IMDSG produces free monthly webcasts for retirement centers and libraries around the world on every aspect treating and living with central vision loss. Recordings of these presentations may be viewed by groups and individuals at www.mdsupport.org/nsg.html.