Lyme disease advocates hosts award-winning documentary screening in Glens Falls
May is Lyme Disease Awareness Month. The Lyme Action Network, an organization that advocates for advances in prevention, diagnosis and treatment of Lyme and other tick-borne diseases, is hosting a panel discussion and screening of an award-winning documentary film called “The Quiet Epidemic.”
The film is nearly eight years in the making. It begins as a patient story, evolves into an investigation into the history of Lyme disease, dating back to its discovery in 1975.
Holly Ahern – a microbiologist at SUNY Adirondack and co-founder of Lyme Action Network – became an advocate after her daughter’s personal experience with Lyme Disease.
“There’s sort of two versions of Lyme disease,” Ahern said. “There’s the ‘Oh, ticks, and I’ve got a bullseye rash, and I’m going to get an antibiotic, I’ll be fine.’ That works for some people,” Ahern explained. “However, the reality is most people don’t get the bullseye rash, most people don’t know they’ve been infected.”
That was the case for Ahern’s daughter, Kaleigh. She was bitten by a tick at the age of 12.
“I woke up, and I took a shower before school,” Kaleigh said as she described the moment she saw the tick attached to her skin. “And when I saw this insect attached to my arm, I remember trying to wipe it off like you would normally, and it wouldn’t come off.”
Ahern removed the tick from her daughter and saved it for the doctor to examine.
“Our doctor at the time didn’t worry much about it. So we kind of mirrored his reaction,” Kaleigh explained. “Well, no problem. There’s no bullseye rash. So I’m fine.”
However, Kaleigh was wrong, and so was the doctor. It wasn’t until her freshman year of college that Kaleigh had her first severe symptoms.
“I was having a lot of heart racing, a lot of panic sensations that I hadn’t felt before, I had very bad headaches, searing shooting pains,” Kaleigh explained. “One thing that kept happening is my left side kept going numb, my left arm would go numb.”
This was only the beginning of a long list of unanswered questions, and a tough road to recovery for Kaleigh and her family.
“We couldn’t get help. We were unable to. The doctors were clueless. They had no idea,” Ahern said as she talked about the journey to finding answers. “Some of the neurological symptoms were profound. It was a few months, by coincidence we heard from a friend who had Lyme disease who was giving a presentation. And I’m listening to this talk, and I’m like that’s it, it must be Lyme disease. So we asked for the test and thankfully the test came back positive.”
Similar to the personal stories in the documentary, “The Quiet Epidemic,” even after being diagnosed, the doctors weren’t able to figure out how to bring Kaleigh back to full health. The Aherns went through two years of trial and error.
“Trying different treatment approaches, trying to find out what was wrong, a lot of research on my part to try to,” Holly explained. “Well, obviously antibiotics are not the answer to this. So what are we going to do? And ultimately all that energy and effort returned her to functional and then gradually in increments she’s doing well now, and she actually went into the medical field, so she could pay it forward a little bit.”
“The Quiet Epidemic” also reveals the controversy of Lyme disease and explains why there are still so many questions about the disease nearly 50 years after it was discovered.
The film also touches on congenital Lyme and other tick borne infections.
Ahern will join the panel discussion following the screening of the documentary.
The screening begins at 2 p.m. Sunday, May 21, at the Charles R. Wood Theater in Glens Falls.
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