More than 80,000 Signatures Still Needed! Click Here to Make September “Dystonia Awareness Month”

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In April, we introduced you to three women living with a rare neurological disorder called dystonia.

It causes involuntary movements all over your body.

KVRR’s Bianca Buono met up with one of those women again about a new petition supporting dystonia.

Joey Tehle uses this computer to communicate.

She was diagnosed with onset generalized dystonia after dealing with symptoms that affected every part of her body for 17 years.

“It’s still only about maybe 20 people out of 100,000 that develop this disorder so it’s still not that common. I think it’s also not taught very well in medical school so primary care physicians aren’t as aware of it or they don’t think about those sorts of things,” says Dr. Tanya Harlow, Director of Movement Disorders Clinic at Sanford.

Joey, along with thousands of others across the country, is trying to change that.

“We can help those who really need help to live a fuller life,” says Tehle.

They’ve started this online petition to officially make September “Dystonia Awareness Month.”

“By spreading awareness it makes people aware and more research can be done and possibly a cure,” Tehle says.

There is no cure for the disorder but that’s not what this petition is about.

Its purpose is to educate the public about its existence.

“It’s really important that people are more aware of it so that they know that there are places they can seek help. And so that maybe they can point their doctors to ‘I think I need to see a neurologist,” Dr. Harlow says.

Joey believes dystonia isn’t well-known because…

“Because people don’t die from it,” she says.

The petition currently needs more than 90,000 signatures to reach its goal but Joey isn’t giving up.

“I’ve found this is my passion,” says Tehle.

And she has a message for everyone watching.

“Please sign the petition it takes 30 seconds,” Tehle says.

Here is the link to the petition.

The goal is to get all signatures by September 24th.

Categories: North Dakota News