PXEer Kate Williams' Journey
AUGUST 1, 2011
By Kelly Harris, Information and Education Coordinator, PXE International
This article first appeared in the Summer 2011 PXE International MicroMemberGram
When Kate Williams was diagnosed with PXE at age 18, her doctors didn’t know what to tell her. Focused primarily on cardiac issues, they never warned her that her eyesight might be affected. “My parents thought my insides were going to fall out,” she explained, “They didn’t say anything about my eyes.”
Kate went to an optometrist for new contacts at the age of 40, and the optometrist noticed something odd about the back of her eyes. Kate was referred to an ophthalmologist, who warned that her eyes had angioid streaks, and that she would lose her vision. “Sure enough,” Kate said, “five or six years later, I had a hemorrhage in my right eye.” Kate’s life changed drastically. She was no longer able to drive, which in vehicle-dependent Southern California was crippling. Not daunted by the challenge, Kate moved to San Francisco where public transportation would enable her to live more easily. Kate had to adapt quickly to keep her job when she lost vision in her other eye several years later. She turned to adaptive technology, which enabled her to thrive in her position and drove her towards her future career path.
Kate now works for LightHouse for the Blind and Visually Impaired in San Francisco, running the Employment Immersion Program. Kate explained that part of the program’s goal is “to take blindness out of the equation” during the hiring process, enabling people with low vision to seek and acquire positions suited to them. The program works with individuals for about twelve weeks, one-on-one and in classroom settings. One class has graduated so far, and of the fifteen people who participated, four are working and the others are actively interviewing. “It’s really wonderful and absolutely heartwarming,” she says, “We’re seeing some real success.”
For PXEers specifically, Kate advises, “If they are struggling I encourage them to connect with whatever agency can help them best in obtaining a true low vision exam.” Kate says that getting a low vision exam is critical, allowing people with low vision to get the support and adaptive technology they need. “The other thing that I would say is that for people who are working, or who feel that they are not able to keep working, … reach out before they give up or before they go to their managers, because managers tend to work better with people who are solving issues.” Being proactive and constructive has empowered Kate to guide her own career while living with low vision, driving her to help more people find workplace success.
For Kate, the most rewarding thing about her work with LightHouse is “when that person comes up to you and says, ‘they offered me a job!’. Even going on interviews for some people really turned around their lives. They were always full of ‘but I can’t, but I can’t’ and to see them know they can is the most rewarding thing in the world.”