Several people here in Central New York who have or have had Lyme disease stood with Senator Schumer today calling for federal health officials to stop dragging their feet on help for treatment and prevention. Martha Conan says her case went undiagnosed for a decade.
“In 2001 I started getting symptoms and I didn’t know what the heck they were. And not until 2012 was I diagnosed with Lyme disease. That’s how long it takes and I don’t want anyone to have to suffer like that.”
She still suffers both physical and mental effects…and is part of the Empire State Lyme Disease Association which offers support and referrals. She hopes more funding might raise awareness in the medical community.
“…if the doctors knew what they were looking for, if
they had a proper education about Lyme disease. I was diagnosed with bulging, spinal stenosis, drug-seeking, crazy, being a hypochondriac, lupus, then they said, ‘ you either have MS or ALS.’ I didn’t have any of those things.”
SUNY E-S-F Doctor Melissa Fierke also contracted the Lyme disease…but was cured. It got her to start research on the disease on ticks that transmit the disease.
“We were very surprised by the numbers we got, very high compared to what we were expecting. So we found about 14% disease prevalence in the nymphs and then in the adult ticks, there was 48% disease prevalence.”
They hope to see funding flow out of the Federal Department of Health and Human Services for more research, vaccine development and education of both doctors and the public. Schumer, who coincidentally also contracted Lyme disease, says the 21st century cures act already has the money.
“There was a lot of money in this bill, about $8.3 Billion for a lot of health needs, and it can be used for any of them. So there’s plenty of money to be used right away. None (is going toward Lyme disease), right now they’re not doing any of these things.”
Between 2000 and 2007 there were 125 cases of Lyme disease…from 2008 to 2015 there were 847. Schumer adds there's a new tick-borne disease called Powassan that has started to show up in New York, which is deadlier than Lyme Disease.
A group called “Spirit of Hope United by Lyme” holds meetings in Camillus each month and has a Facebook page for support and information.