Travelers Rest woman champions little-known neurological disorder

TRAVELERS REST, S.C. — A Travelers Rest woman is continuing her campaign to raise awareness of dystonia, a little-known neurological disorder that affects about 300,000 people in North America each year.

Dystonia causes uncontrollable muscle spasms that twist the body into involuntary movements and awkward postures. And throughout September, volunteers across the country are using their stories to increase public awareness and reach the un-diagnosed as part of the annual Dystonia Moves Me campaign.

In 2012, Kelley Rainey was diagnosed with cervical dystonia, a type of dystonia characterized by extreme, involuntary muscles spasms in the neck (along the cervical spine). Cervical dystonia causes twisting movements and fixed positions of the head and is typically tremendously painful.

Rainey decorated the gazebo on Main Street along the GHS Swamp Rabbit Trail in the spirit of promoting awareness locally.

"For those of us who live with dystonia every day, we pray for better treatments, but most importantly a cure," Rainey said. "A cure cannot happen without research, and research cannot happen without awareness."

According to the Dystonia Medical Research Foundation, the disorder is frequently misdiagnosed as conditions as diverse cerebral palsy or psychiatric disorders. It can strike children of virtually any age and disables adults in the prime of their lives. Dystonia may affect multiple generations in a single family or occur sporadically with no family history. Prompt diagnosis is critical because research suggests that treatment outcomes improve with early intervention.

By mayoral proclamation read in 2014, September is Dystonia Awareness Month in Travelers Rest.

For more information and/or to make a donation, visit

Related on the Tribune: Mayor McCall proclaims 'Dystonia Awareness Month' in Travelers Rest