Woman meets teen battling same rare disorder

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TALLAHASSEE, Fla. (WCTV) -- A few weeks ago, Destiny Sasser took part in the MDA Muscle Walk.

The Tallahassee, Florida woman is battling an exceedingly rare disease called Andersen-Tawil Syndrome.

Fewer than 100 people worldwide have been diagnosed with it, but after sharing her story recently, Sasser got a message from a teen in Jacksonville, Fla. battling the same thing.

They met last week for the first time.

"It's nice to finally meet you. Can I give you a hug?"

Sasser had never met anyone besides her dad with Andersen-Tawil Syndrome. That changed on Friday at Tallahassee's Cascades Park.

"I was completely overwhelmed and I got super emotional," Sasser said. "I never met anyone with the same condition as me... I'm about to start crying again," she said with a laugh. "It was just incredible."

"It meant so much to me," Paige Richards said. "I talk to people who have the same condition as me because it makes me feel more normal. Most people still avoid me because of what I have."

"You feel very isolated," said her mother, Wendy Richards. "So it normalizes it. We're all just normal people and Tallahassee's not that far away."

15-year-old Richards struggled for years to find out why her body kept freezing.

"I've even had a psychiatrist tell me it's all in my head," she said.

Both young women cope with bouts of periodic paralysis that can last a day or a week or longer. Both families pushing for a diagnosis, some medical explanation for it all.

"I just went doctor appointment to doctor appointment. It was just one thing after another," said Destiny's mother, Amanda Sasser. "I'm going to find out. I'm not going to quit fighting."

"Of all the forms of periodic paralysis, Andersen-Tawil's the hardest one to pinpoint," Wendy Richards said.

Now, finally someone who understands, who can compare notes and can help spread the word about this rare genetic condition.

"Aww... It's so cute!"

Paige's mother brought a surprise gift for both young women: matching Zebras. They're symbolic of rare conditions; a sign that though rare, they're not alone.

It's a memento to commemorate "meeting a fellow zebra," she said.

Both young women also now belong to a Facebook group that connects periodic paralysis patients.

Read the original version of this article at wctv.tv.

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