Young Woman Battles Immune Disease, Shares Story in Documentary

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Shelby Tozier looks like your typical 21-year-old, but for most of her life she’s been battling an immune disorder.

“Ultimately if I get sick, the antibodies that attack the bacteria in me will end up attacking my brain,” said Tozier.

At age 6, she was diagnosed with PANDAS, a Pediatric Autoimmune Neuropsychiatric Disorder.

Symptoms seem to correlate with mental illness, like depression or anxiety.

“It’s weird for a 9-year-old to be so depressed. I had these motor ticks like this and it was just so weird it came out of no where.”

The actual illness is not mental and can be cured with an antibiotic.

Tozier said, “It got really bad when I was 16, but after I found the right one I got all better in like a month.”

Much of the research on the illness is brand new.

Which is why Governor Paul LePage has named October 9th, PANDAS Awareness day in Maine.

PANDAS Specialist, Dr. Rosario Trifiletti said, “Part of PANDAS awareness day is to hopefully for parents and doctors as well to at least consider this before they would commit a child to a long course of psychiatric medication,”

Once Tozier went on medication, life became a little easier, but the illness inspired her to meet other people in her shoes.

“When I was sick I started a documentary all over America,” said Tozier.

She discovered how common PANDAS can be.

Dr. Trifiletti said, “It’s not rare at all, it’s probably on the order of being as common as Autism.”

Tozier believes the people she met along the way have inspired her.

While her road to recovery won’t be easy, she’s prepared to fight.

“I could rebuild my life but if I get really really sick again there could be a chance I would just have to lose it all and I have to kind if prepare for that,” said Tozier.

For more information on her documentary, “PANDAS: A Real Life Case of Dr Jekyll and Mr Hyde,” visit the movie’s Facebook Page.

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