When Blindness Comes Too Soon

An oceanographer gradually loses her sight -- but not her career vision.

Oct. 19, 2009— -- 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."

Bower is currently looking forward to new adaptive technologies that would make data readouts more tactile, possibly eliminating the need for video magnifiers. She is also hopeful about new retinal transplant studies, for which the first clinical human trials are currently underway in Europe.

"The stem cell trials are the most promising hope for a treatment," said Dr. Marc Gannon, director of the Low Vision Institute in Fort Lauderdale, Fla. "Not only might we be able to repair vision that's already been lost, but this research could help identify the genetics that cause the early or juvenile forms of the disease, helping us to stop the vision loss before it even begins."

For now, Bower, who is also a married mother of one, said support from her family and her employers at the institute, who helped purchase most of her equipment, has been key.

"For anyone who finds themselves in the situation I was in 25 years ago, they need to learn to become a very strong self-advocate," Bower said. "And hopefully, you want to pursue something that you're passionate about, because you're going to need the energy that comes from such a passion to push through the challenges."