Rogers is a member of the Facebook page Neuronauts, a closed dystonia support group with about 650 members that Raines created in 2012. Raines says she encouraged the Neuronauts to post their stories on CNN's iReport in honor of Dystonia Awareness Month.
"We are isolated as a whole," she says of the group and people who suffer from dystonia. "We have no support. We have no money. We're just trying to keep ourselves alive."
Michele Weber, a mother of two who has a Ph.D. in political science, is also a Neuronauts member. Like Raines, she has multiple forms of dystonia that affect her neck, limbs and facial muscles.
She began experiencing symptoms as a child and started seeking medical opinions in her 20s. But Weber says she wasn't diagnosed until her 40s.
"(Dystonia) is devastating to people socially and economically," she says. "We're not the glamour illness. We don't have the celebrity spokesman."
Weber's peers are often shocked to hear she works as a financial adviser, an "assumption" that her visible symptoms are indicative of "lesser intelligence," she says. She bucks her natural tendency to keep personal issues private because she believes raising awareness is key to advancing treatment and a cure.
"Until I know that everybody is diagnosed or have adequate treatments, I'll keep being a big mouth about this," she says.
Like Rogers, Weber considers herself fortunate because she has her husband's support and quality care from a doctor she trusts. Her symptoms constantly limit basic abilities such as using her hands and legs.
"I am disabled -- no more, no less," she says. "All of our abilities are temporary."
All three agree that the medical community's lack of understanding of dystonia contributes to the public's lack of awareness.
Dystonia's wide variety of forms has caused a lag in research and treatment, says Dr. Mahlon DeLong, medical director of the Dystonia Medical Research Foundation and professor of neurology at Emory.
"There was a period of time in the '50s, '60s and '70s when physicians thought this could be psychogenic," he says, meaning it originated in the mind. "It was a very unfortunate time."
DeLong says that the medical community now understands dystonia's symptoms are not psychological and that the recent discovery of new genes creates opportunities for advancements in treatment -- and may lead eventually to finding a cure.
"We're beginning to understand the molecular disturbances in the brain," he says.
Identifying the genes that may be involved in dystonia will allow researchers to learn about their different mutations, Jinnah says. These findings will then enable scientists to understand better how the mutations alter patients' biochemistry and how the mutations affect the brain's normal neurological functions.
But DeLong also says that not all forms of dystonia are genetic and so gene mapping is not necessarily a Rosetta stone for grasping dystonia.
"I think we're on the edge of discovery and better therapy," DeLong says. "Some of the new approaches that are coming out will prove very affective for dystonia."
More funding and research cannot come soon enough for Raines, who says her pain is constantly fluctuating between a four and an eight on a scale of 10.
She can still drive short distances, getting out about three times a week to go grocery shopping and take her son to school. In August, she will enter her first art show since being diagnosed with dystonia. But she devotes the rest of her time to supporting and encouraging fellow Neuronauts.
She says people diagnosed with dystonia need to vocalize what they are going through.
"My background is all about expressiveness and being creative," she says. "The more you can express yourself, the more healthy you are on a cellular level."