When Blindness Comes Too Soon

PHOTO Blind oceanographer, Dr. Amy Bower, is shown.

When 24-year-old Amy Bower sat down for a routine eye exam, she never expected that her blurry vision was actually the onset of a disease that would leave her legally blind.

A graduate student at the University of Rhode Island, Bower feared she may be forced to abandon her dreams and the exciting oceanographic career she loved.

Now, more than 20 years later, Bower is an oceanographer at the Woods Hole Oceanographic Institute in Massachusetts -- and a poster child for vision rehabilitation.

"When I first heard that I had macular degeneration, I thought, 'What's that?'" she said. "I had never heard of anyone with this disease.

"When I heard that my vision was going to continue to degenerate with no real prediction of how far, I was pretty scared... and quite sad."

Age-related macular degeneration or AMD is among the leading causes of blindness in the United States, and the number one cause of blindness among Caucasians. About 1.8 million Americans suffer from AMD, and another 7 million are at a significant risk of developing the disease, according to the National Eye Institute at the National Institutes of Health.


"The disease slowly destroys the central portion of a person's vision, affecting their ability to read, drive and recognize faces," explained Dr. Gerald Friedman, a Boston low vision specialist who treated Bower when she was first diagnosed.

What sets Bower apart is that she has the rarer juvenile form of the disease, which strikes earlier than most. Currently, there are no approved drugs or therapies that can help her.

The signs were there. Bower had suffered blurry vision since her teens. But shortly after the official diagnosis in her early twenties, her vision took a very rapid turn for the worse.

"Before I knew it, I couldn't read the text in a paperback book," Bower said. "Then, within two years, even by adjusting the text on a computer screen, I couldn't read the words on the computer."

That's when she turned to Friedman, one of the few specialists in the country who focus solely on low vision rehabilitation.

Working Through Macular Degeneration

"Most people who are legally blind have some degree of vision left, so my job is to find where that vision is and design a method to use it," Friedman said.

In Amy's case, she also suffered from a condition called retinitis pigmentosa, which degrades the peripheral vision, leaving her with just a thin ring of usable vision.

"Most people define successful rehabilitation as being able to read their favorite book, or recognize their family members," Friedman said. "But Amy's particular needs were a huge challenge because she was going to be on board research vessels and using all kinds of equipment -- so we threw everything we had at her in terms of technology and she just absorbed it."

Today, Bower travels the world, leading scientific missions on sea currents -- and she does it all by using adaptive equipment and other resources.

Large video magnifiers allow Bower to read data printouts and graphics mapping deep sea temperatures. Meanwhile, powerful computer voice and magnification software allow her to use the computer just as well, if not better than most fully sighted people.

"If it weren't for these powerful programs, I wouldn't be able to do my job."

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