Inherited eye disease, retinitis pigmentosa, derails West Mifflin womans autonomy

Posted: Published on January 18th, 2015

This post was added by Dr. Richardson

Diane Faust was accustomed to living at 100 mph, as she puts it.

She reared two daughters. She helped run an insurance agency. She cooked and drove and shopped.

An inherited disease, retinitis pigmentosa, drained much of her eyesight during the past couple of years, forcing Faust, 52, of West Mifflin to quit her job and ask herself a soul-jarring question: What does the world do with people like me?

I don't have the independence of getting in the car and running to the store for something. You need to learn to rely on other people, asking for help. Sometimes that's difficult, she said.

Faust is among 20 percent of sight-impaired people for whom doctors have not found a cure or effective prevention. A whole-eye transplant pursued by a Pittsburgh-based international research team could deliver hope for millions of them, including people blind since birth.

For the time being, Faust said, it's frustrating to explain to her family that doctors simply cannot fix her eyes. But guidance from Blind and Rehabilitation Services of Pittsburgh and a return to school at Community College of Allegheny County are helping her to find footing and gain confidence.

The way I looked at it, I had choices. I could hide in my home and not do anything. Or I could take what they taught me in rehabilitation and forge another path, Faust said.

She's looking to finish an associate's degree that she started almost 30 years ago, and then hopes to land at least part-time office work.

The transplant research could bring attention to the millions of stories like hers, she said. More than 270,000 Pennsylvanians have vision disabilities, according to the National Federation of the Blind.

I never realized how many people are out there with (impairments) until I went through rehabilitation services, Faust said. ... We need to try to do more.

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Inherited eye disease, retinitis pigmentosa, derails West Mifflin womans autonomy

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