Macular Degeneration: A Family Affair

Client Gretchen Preston is pictured from the waist up, sitting and smiling with her arms around her black Labrador Leader Dog Floyd, who is in harness

Gretchen and Leader Dog Floyd

I adored watching sunsets, scanning the sky for shooting stars and summer fireworks. Never did I consider these simple things would become only visual memories. In the fifth grade I began having problems with my vision. Two years earlier, my younger brother had been diagnosed with an inherited eye disease. The specialist told my parents to watch for signs of visual difficulties in their other three children. Both brother Chris and I were diagnosed with Stargardt disease. This rare inherited eye disease is a juvenile onset form of macular degeneration. Similar to age-related macular degeneration (AMD) in the resulting loss of central vision, they are two different diseases.

We could not read normal print, street signs or see the details of faces. We used magnifying machines, talking books and volunteer readers to help with homework. With the support of low vision professionals, visual aids and daily help from friends and family, my brother and I adjusted to having low vision. As college students we worked with the state department of vocational rehabilitation and the university counselors for disabled students to become successful in academia. We earn master’s degrees and had long professional careers. After genetic counseling, my siblings and I decided not to pass the gene for Stargardt’s on to future generations. Never having the visual acuity to drive a car, both Chris and I chose to live in towns with public transportation.

Our vision continues to fade. To date, we have lost our color vision and experience night blindness. Chris travels with a white cane. He was evaluated for a stem cell transplant, but was ruled out medically. My vision now is 20/800. I see only blurry shadows. When I moved rurally, I found walking through meadows and along the beach to be disorienting with a cane.

Two and a half years ago I went to Leader Dogs for the Blind and was trained with a Leader Dog and talking GPS. Wow! Having the dog for safe, independent travel and the GPS for orientation is so empowering. After being visually impaired most of my life I never have known so much confidence, so much freedom or had so much fun being blind!