Rare disease spurs Utah County woman to be Democratic activist

Politics » Utahn Jamie Hartley says nobody was more surprised than she that her politics leaned left.
by: By Matt Canham| The Salt Lake Tribune

Washington • Of all the Utahns elected as delegates to the Democratic National Convention, Jamie Hartley is the outlier. She isn’t a party insider or union leader, a politician or a campaign strategist.

Hartley has no real political experience at all.

But as a Utah County resident struggling with a painful genetic disorder she’s very familiar with the nation’s medical system, and that’s something she wants to bring to the big political gathering in Charlotte, N.C.

“I wanted to be a voice for other people like me who have a severe disability, who are too sick to get out and say we need affordable health care,” she said.

Every morning Hartley receives help bandaging what is left of her fingers, her fragile hands and arms. Next, she wraps her feet.

Her rare skin disorder is called epidermolysis bullosa, or EB. Essentially it means her layers of skin don’t stay together, creating blisters and open wounds. It has damaged her esophagus, impacting her small, almost childlike voice, and it makes her susceptible to skin cancer, which she has battled for the past 12 years, a fight that’s getting increasingly difficult and likely only to get worse.

Only 12,000 people in the U.S. have EB, according to the National Institutes of Health, and it is fatal, with most never making it out of their 20s. Just last week, Hartley turned 35.

With the help of her husband, Taylor, Hartley has created a nonprofit called EB Survivors to help others battling the disorder and struggling with medical costs. To cope with her own pain, she picked up painting, a skill she developed after learning she may have to eventually amputate an arm.

“I thought of all the things I wanted to do that I haven’t with my hands,” said Hartley, who paints pictures of wildflowers and fanciful depictions of animals mostly in acrylics.

But until 2009, she hadn’t been paying that much attention to politics. That’s when President Barack Obama began work on his signature health care law, which tugged at her desire for universal coverage.

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