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Looking for Support
The Facts about
Central Vision Blindness By Teri Brown
After being diagnosed with central serous chorioretinopathy at age 58, he retired from a 23-year career as a public school teacher to help others find much needed information and support. In 1995, he founded Macular Degeneration Support Inc., which is a nonprofit public service organization offering assistance to people affected by macular degeneration and related retinal diseases.
Central Vision Blindness
"In some cases, a support system can make the difference between choosing to live or to die," says Roberts. "Vision is about 80 percent of our total sensory input. Losing it can be very traumatic, but fear of the unknown future is even more traumatic."
Roberts says the first three questions a newly diagnosed patient asks are: Why am I losing my vision? Are there any treatments or cures? How can I learn to live successfully with vision loss? These are the three questions that a good support system will answer, says Roberts.
"I have personally seen the turnaround time from diagnosis to adaptation diminished from months to weeks in people who have found this kind of help," says Roberts. "Just knowing that someone understands and cares is the first important step, because macular degeneration can be an invisible disease that is difficult to comprehend by sighted family members and friends."
Roberts believes it is much easier to find support now than it was 12 years ago. When he began searching for help, there was almost nothing on the Internet for patients with macular degenerative diseases. Then he came across a small e-mail group of about 30 people who were all trying to help each other and he thought it would be a good idea to put everything they learned on a Web site for others to read as well.
"Today, more than 350 people subscribe to our group, the Web site has grown to 400-plus pages and Macular Degeneration Support has become one of the leading support organizations in the world," says Roberts.
Macular degenerative diseases don't have to mean the end of the world. Between support networks and all the new research being done, people diagnosed with macular degeneration have hope of new treatments and a world of support and opportunity waiting for them.
