Often misdiagnosed, families fight for more PANDAS/PANS awareness

Families fight for PANDAS/PANS awareness

LITTLE ROCK, Ark. (KTHV) - This year, the Arkansas General Assembly passed a resolution, proclaiming the 9th of October as National PANDAS/PANS Awareness Day.

It’s not the type of pandas you might be thinking of; it's much more serious. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder and PANS stands for Pediatric Acute Onset Neuropsychiatric Disorder. Both are often misdiagnosed, yet treatable.

People get the disorder by catching the flu, strep, pneumonia or mycoplasma. Then, seemingly out of nowhere, they experience lasting obsessive compulsive disorders, intense fear, anxiety, and other devastating symptoms. That’s why families gathered at the State Capitol Monday to share their stories and spread awareness.

One of those people was Cathy Puckett. She said that her 19-year-old son, Cameron, woke up one day and was completely different. He was depressed and suicidal.

“He lost the zest for life,” she said.

PANS had infected his system, changing his thinking and personality. Like Cameron, people with PANS are often left with intrusive thoughts, eating disorders, and anxiety. Cameron said it was tough going through life.

“I went day to day not really wanting to do anything and not really wanting to enjoy anything,” said Cameron. “It was tough to live life but not really live it.”

After numerous incorrect diagnoses, he was finally diagnosed with PANS. Yet, doctors kept turning him away due to lack of knowledge about the condition and because of his age.

Eventually, one doctor took a chance on Cameron and he received treatments that were effective. For other families, the lack of knowledge about PANDAS/PANS meant years spent fighting the condition with little help or answers.

That includes the family of Max Wallace, a 13-year-old with PANS, who took his own life after a constant battle with the disease. Also, for Marcy Nelson, her daughter went 5 years with no answers before a PANS diagnosis and now options are limited.

“A lot of the smaller scale therapies that you would try quit working or don't work and the brain is just being attacked constantly,” said Nelson.

Although the road ahead is unsure, she said she is not giving up.

“We refuse to give up on her because we know her as a lovely child who is very intelligent and can still live a good life even if she’ll always deal with this the rest of her life,” said Nelson.

Nelson started a Facebook group for people with PANDAS/PANS and you can find that by clicking here.

For more information about the PANDAS/PANS, click here.

© 2017 KTHV-TV


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