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They say the disease with high numbers in Maryland and northern Virginia is being misdiagnosed and mistreated. And they want Congress to step in.
Fairfax County (web|news) native Kelly Eisenhart quietly stood off to the side during Wednesday's hearings.
Her mission, though, expressed loud and clear.
"We need education. We need awareness. We need doctors who know about Lyme Disease. And we need doctors who know how to treat," said Eisenhart.
Her own symptoms started when she was a freshman in high school. A mysterious red rash, extreme fatigue, profound pain.
Two years and nearly 40 doctors later, she was finally diagnosed with Lyme Disease.
"I was ok until I relapsed. Nobody would help me. Nobody would help me," said Eisenhart.
And that's why she's among those asking Congress to take a closer look. They argue that because the tick-born disease both woefully misdiagnosed and under-reported, the government isn't aware of how prevalent it is.
"I would like the health aids and the congressmen who attend this briefing today to understand the seriousness of this disease and how debilitating it is for patients," said Sharon Whitehouse, whose son has Lyme Disease.
Perhaps most importantly, they want late-stage Lyme Disease reclassified as a chronic illness in part to require insurance companies to pay for long-term antibiotic therapy.
It's a push that's both political and emotional that patients like Eisenhart say they're not giving up.
"I am very hopeful. I have to be. Because I'm 22 years old. I've got the rest of my life ahead of me. And I want to live," said Eisenhart.
It's been more than 15 years since Congress last took a look at Lyme Disease.
Right now, there's a bill working its way through Congress calling for an additional 20 million in federal funds for Lyme Disease research.
So far the bill has been held up in committee.
I suffered a lot of brain damage and neurological conditions, I could write a book about my journey but once you heard one Lyme story they are all the same. Docs don't care about this disease and aren't looking for it and they just don't have any training in a infectious Disease such as this.
My life is basically over and I will never be the same again, but I am most worried about future Lyme victims especially the young Children and teens. I wrote everybody trying to spark some interest but now that this movie came maybe things can really change for us. At least give us some respect and don't call us crazy because we are not crazy we are very sick.
Thanks again for giving us Lyme patients some media coverage!
Johnnylight
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