DOVER — The Delaware Chapter of the Tourette Syndrome Association strives to help those with tic disorders and their families with support groups in both Wilmington and Middletown.
Delaware Chapter leader Susan Breakie, a mother of a child with Tourette Syndrome, is on a mission to spread awareness of the disorder which goes misunderstood by many.
“A lot of people think of TS as the ‘swearing disorder’ but that type of TS only effects a small percentage of people,” she said. “Its a neurological spectrum disorder that is different for everyone.”
The Tourette Syndrome Association estimates that one in every 100 Americans is living with TS or other tic disorders. TS is a childhood-onset, neurodevelopmental tic disorder effecting three times as many boys as girls. The disorder causes sudden, uncontrollable movements and/or sounds called tics. A few examples include head bobbing, arm jerking, shoulder shrugging and grunting.
Symptoms can range from mild to severe. There is no cure for TS or medication that eliminates tics so in most cases, tics persist through the lifespan although the symptoms may vary in severity.
“To be diagnosed, symptoms must persist for more than one year and sometimes the symptoms aren’t very noticeable,” Ms. Breakie said. “I knew there was something different about my son, but it was actually a school counselor that brought his specific symptoms to my attention.”
The support groups help parents and families cope with children and even adults with TS giving them peer support, information and resources.
“When you come, it’s very easy to make friends because you already have this in common and everyone can understand what you’re going through,” Ms. Breakie said. “It’s also helpful that some members have older children so they can help those with newly diagnosed children with the process and guide them through what to expect when it comes to school and home life.”
Some students with TS may qualify for an Individualized Education Plan or other services at school and the Tourette Association can give advice on educating their child’s teacher about TS and can provide a Youth Ambassador to come into class and teach classmates about TS.
“It’s very difficult to see your child struggle with something they can’t control,” Ms. Breakie said. “The main problems they face are from others, especially classmates who don’t understand the condition. It’s been three years since my son was diagnosed and this is the first year his classmates have begun to accept and understand TS.”
The mission of the Tourette Association doesn’t stop at addressing immediate issues that children and their families face.
“Another major role of ours is advocacy,” Ms. Breakie said. “That includes talking to our federal legislators about health care bills and making sure they know about TS, and the same goes for the state level. We want our legislators to be educated.”
The local and state chapters also donate to the national chapter which is pursuing research to identify the cause of, find the cure for, and control the effects of TS.
A new fundraiser the Delaware Chapter is hosting this year is a 5K Tourette Syndrome Awareness Walk on May 16 at Glasgow Regional Park.
The walk is open to the public and will provide an opportunity for the public to meet families with children living with TS to learn more about the mission of the Tourette Syndrome Association. All proceeds will go toward the local and national chapters of the association.
The walk begins at 10 a.m. with day-of registration beginning at 9 a.m. at Glasgow Regional Park in Newark.
Pre-registration is $25, $20 per child (ages 4 through 17), $20 per senior (65 and older). Registration is free for children 3 and younger.
Pre-registration can be completed at tourettedelaware.org/events. The deadline to register online is noon May 15.