Raising awareness on the syndrome

Newton Grove residents Wyatt Lanier and his grandmother Paula Brinkley have racked up miles upon miles traveling across the eastern part of North Carolina, advocating for those with Tourette syndrome and raising awareness of the neurodevelopmental disorder. That has included lobbying towns to adopt proclamations observing Tourette Syndrome Awareness Day — the City of Clinton joined that growing list earlier this week.

Wyatt lives the neurological condition every day, and some of those days are better than others. In fact, Brinkley’s eldest daughter, Victoria, who is Wyatt’s mother, also has Tourette Syndrome. It is a part of them, but doesn’t define them.

“While they both persevere daily, the struggle is real,” Brinkley said. “From communication to merely walking, they face this disability with grace and dignity. By educating and informing, we hope that the stigma is lessened one person at a time.”

A hallmark of Tourette syndrome are the unwanted, involuntary muscle movements and sounds known as tics that can’t be easily controlled — a blinking of the eyes, stomping, shoulder shrugging or unusual sounds, all in an effort to scratch an unscratchable itch. Those tics range from mild to severe, with the latter interfering with communication, daily functioning and quality of life.

There are more than 200,000 cases per year in the United States. More than 23,000 school-aged children in North Carolina alone are dealing with Tourette Syndrome. Although some of these cases are aided by medication — antidepressants and hypertension medication among them — there is no standard treatment or known cure for the disorder. The exact cause isn’t known.

TS is an American with Disabilities Act (ADA)-recognized disability, but many still don’t know about it, Brinkley attested.

At the behest of Brinkley and Wyatt, who is a youth ambassador for the National Tourette’s Association of America, Clinton Mayor Lew Starling and the Clinton City Council on Tuesday proclaimed June 4, 2023 as Tourette Syndrome Awareness Day. The Council adopted a similar proclamation last year. National Tourette Syndrome Awareness Month is recognized from May 15 to June 15.

While 1 in 60 school age children have Tourette or a tic disorder, a staggering 50% go undiagnosed. Tourette is widely misunderstood, misdiagnosed, and under-diagnosed, and there is no standard treatment. The only “cure” for TS is education and awareness to reduce the stigma. Proclamations boost that awareness.

“In having this in our town, we believe it will be instrumental in bringing awareness to Tourette Syndrome and to the support services the Tourette Association of America has available, reaching people who had previously suffered in silence,” said Brinkley, a volunteer with the Greater Carolina Tourettes Association. “It will help those of us with TS get one step closer to the only ‘cure’ available — awareness.”

Wyatt and his grandmother have reached out to solicit proclamations from nearly every North Carolina municipality in the eastern part of the state, from Fayetteville to Oak Island, Greenville to Garland, and everywhere between and beyond.

Proclamations have been received from Wilmington and Richlands, Carolina Beach, Clinton, Kenansville and Wallace. Also, Greenville as well as New Bern have approved and proclaimed May 15 to June 15 as Tourette Syndrome Awareness Month.

Brinkley said an “awesome thing” that towns adopt proclamations — some with more fanfare than others — but if it isn’t discussed past that general statement, awareness campaigns die as soon as those brief ceremonies are held.

“It stops when we leave there,” said Brinkley, who noted that despite a wealth of efforts by her and Wyatt in recent years, she can only point to one article written about a Tourette Syndrome proclamation or Wyatt’s story.

She said Tourette Syndrome is not often the subject of public awareness campaigns so it suffers from lack of education and knowledge, contributing to the stigma. Where more have come to know about juvenile diabetes and autism, for instance, Brinkley said that has not been the case with TS. It is something she and her grandson have sought to change with their constant advocacy and the mileage they rack up visiting towns across North Carolina.

She said Wyatt writes handwritten “thank you” letters to all the towns that adopt proclamations.

“Clinton has supported Wyatt and his endeavors,” said Brinkley. “It means a lot.”

Regionally, Sampson County falls directly under the Greater Carolina’s Tourette’s Association led by Heather Ramsey, who is diagnosed with TS as well as both her college age children. Wyatt has received training for presenting information on TS to spread awareness and educate the public in general as TS is most often misunderstood, misdiagnosed and undiagnosed and currently has no known cure.

During Wyatt’s training, he lobbied on Capitol Hill with North Carolina senators Richard Burr and Thom Tillis as well as U.S. Rep. David Rouzer’s office for procurement of a variety of bills that will help support research as well as healthcare plans that will cover treatment and medicines.

During the proclaimed awareness month, each Tuesday is considered Teal Tuesday. Tentatively, Wyatt, who is finishing his junior year at Mintz Christian Academy, will be presenting at all three levels of school at the school.

Wyatt was diagnosed with TS at 7 years old. He is now 17. He started out in public schools, specifically Hohbton, but Brinkley said they just could not meet some of the required accommodations.

Wyatt takes medication five times a day to manage his TS. He does everything he can to try to ensure it doesn’t hinder him.

Wyatt drives to school, from Newton Grove to Roseboro, he’s “smart as a whip” and loves archery, Brinkley said, attesting her grandson could shoot the core out of an apple. He has excelled in Battle of the Books and has aspirations to be a radiologist, with thoughts on attending Methodist or Campbell to study toward a career in medicine.

He’s just like any other teenager, but sometimes TS can rear its ugly head.

High excitability and environmental effects — anxiety and stress — can have an adverse impact on Wyatt. Some TS can show itself in explicit episodes, but Wyatt’s is the kind characterized primarily by involuntary physical and vocal tics.

“People just don’t know, but it is recognized as a mental disability,” said Brinkley. “It doesn’t mean he’s crazy.”

That’s what both Wyatt and his grandmother want people to know, not just about Wyatt, but about anybody afflicted with TS.

Tourette Syndrome is often accompanied by other mental health disorders such as attention deficit and obsessive-compulsive disorder, learning disabilities, and anxiety.

“It’s a lifetime journey,” said Brinkley. “Some days he can talk, Some days he can walk; other days are difficult.”

In proclaiming Tourette Syndrome Awareness Day in the City of Clinton, Starling deemed it “a special day to promote understanding, compassion, and acceptance for all of our fellow citizens who deserve and need our support to break the stigma that surrounds Tourette Syndrome.”

“There is an important need for more professional help with interest and expertise to identify, counsel, and treat people with Tourette Syndrome,” the Clinton proclamation read in part. “Positive actions to assist children and families living with Tourette Syndrome would result from a broadening of public and professional knowledge and acceptance of Tourette Syndrome.”

After reading it into the record, Starling presented the proclamation to Wyatt.

The Tourette Association of America is actively providing services to families, educating medical professionals and teachers, and supporting research to better understand the signs and treatment of TS. Brinkley, Wyatt and others are on the frontlines in that advocacy.

Those proclamations, like the one adopted locally this week, are often utilized to point to the presence of local support when lobbying for legislation and advocating on behalf of those with TS.

“It is just a piece of paper,” said Brinkley, “but it means a lot.”