Folsom Woman Raising Awareness For Debilitating Disorder Not Many Know About

FOLSOM (CBS13) — A Folsom woman is sharing her story about her experience with a debilitating disorder called dystonia that not many people know about.

Nicole Dean was just 17 years old when her life changed forever. It would be three months before she was diagnosed with the disorder.

One day she woke up feeling a little different.

"I remember going to my parents and saying it's my brain, something's off with my brain," she said.

In days, the spasms, tremors and excruciating pain began. That was six years ago, and it's never gone away.

"It will get worse. There's no cure," she said.

The disorder causes involuntary and uncontrollable contractions of the muscles. For Nicole, the disorder affects her neck.

"I look normal looking at me you wouldn't think she has a disorder or she's disabled, but I feel it all the time, even sitting here now I'm in excruciating pain," she said.

She's far from alone. More than half a million people in the United States and Canada live with the disorder—more than those living with amyotrophic lateral sclerosis and multiple sclerosis combined.

PETITION: Promote dystonia awareness by recognizing Dystonia Awareness Month in September

"It blows my mind that so many of us have it and no one knows what it is," she said.

Nicole is determined to spread the word. She's asking people to sign a petition to get the White House to declare September Dystonia Awareness Month.

With awareness, she says, comes more money for research for the disorder not many seem to know about.

For now, Nicole is on a treatment plan that helps with her spasms, but it's not a cure. She says those signatures could be one step closer to finding one.