Warren man battling dystonia raising awareness for crippling disease with walk Sunday

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Dystonia is a rare disorder with a crippling effect. A 36-year-old Warren man has been diagnosed with dystonia, but he's determined to not let his diagnosis define him.

Jay Dunn can't use words, but through his bright smile, you see and feel his joy - even though his body is betraying him. 

"He describes it as annoying, but a lot of people describe it as very painful," says Jay's friend and advocate, Mike Delise.

When you watch jay walk, you can see what dystonia is doing to him. It's a neurological movement disorder that causes muscles throughout the body to contract and twist. It affects 250,000 people in the United States. Incredibly, it doesn't stop Jay.

"It gets frustrating," Jay tells FOX 2's Deena Centofanti through his communication device.

"The one thing about Jay is a lot different at, than a lot of people with dystonia, a lot of people with dystonia stay in the house or are reclusive. He's willing to do anything," Delise says.

With tails wagging and plenty of affection, his two dogs are a big part of Jay's world, and so is Delise. He met Jay 15 years ago and has been his friend and has been fighting for Jay ever since.
"You just need to get the word out. You just take one look at him, and then when you get people who look at him and have never heard the word dystonia, you know you've got work to do," Delise says. "You're never going to find a cure if you don't get the awareness out, and that's what we are all about, is awareness."

With awareness comes the potential of finding better treatments or even a cure. Right now, the cause is unknown. Treatment ranges from physical therapy, medication, injections or even surgery. But clearly, it's not enough.

"I feel like there should be better treatments by now," Jay says. "I have had it over thirty years and I still have hope."

Jay gives us all hope. On Sunday, you can help at the Dystance 4 Dystonia Walk at the Zoo. When you register either online or in person, that covers your entry to the zoo. So you can help find a cure and enjoy a day out at the zoo.

You can get more information or register online here.