When many people think of Tourette's Syndrome, they think of compulsive swearing. But University of Utah Tourette's Center of Excellence Clinical Program Manager Eva Tukuafu, MSW, CSW, explains that's not the whole story.
"People focus on that because it's what they see in movies and on TV," she says.
The truth is that coprolalia, the compulsive use of socially inappropriate words and phrases, only affects a small portion of people diagnosed with Tourette.
So if Tourette's isn't swearing, what is it, and how can it be treated?
University of Utah Health's program is one of 10 national Centers of Excellence designated by the Tourette Association of America (TAA).
Center of Excellence Director Michael Himle, PhD, defines Tourette as a relatively rare tic disorder usually manifesting in childhood and considered by many experts to be on a spectrum with obsessive-compulsive disorder. In order for a person to be diagnosed with Tourette, they must exhibit both vocal and motor tics.
Brooklyn, a 12-year-old Center of Excellence patient, is one of many kids successfully treated and supported through the Center, the only regional treatment resource of its kind.
Difficult to Diagnose
Brooklyn remembers the exact date her first vocal tic surfaced: November 23, 2014. She was ten years old.
"At first, we just thought it was a cough," Brooklyn said.
"Early tics often manifest as coughs or sniffles," says Himle. "They're often misdiagnosed as allergies."
But after a negative test for whooping cough, visits to multiple specialists and one ENT's camera up her nose, a neurologist at Primary Children's finally diagnosed the chronic cough as a transient tic—a compulsive vocalization that came and went.
About a month later, she added an unspecified motor tic—a compulsive movement that prompted a Tourette diagnosis and referral to the Center. That was July 2015, nearly eight months after her first tic surfaced.
Since then, Brooklyn has acquired other tics, some of which she gives names like "Terry," or "Jerry," as if they're a rotating cast of characters dropping in and out of her life.
Tics come and go for patients with Tourette. Some of Brooklyn's have included stomping, gasping, and coprolalia.
"I say inappropriate things at inappropriate times," Brooklyn admits, matter-of-fact.
With just between .5 percent and 1 percent of the population affected by the complex disorder, treatment options for Tourette are complicated.
According to Himle, treatment is highly individualized and depends on factors like age and other diagnoses.
"Comorbidities are very common with Tourette," says Tukuafu.
Many patients diagnosed with Tourette's also have attention deficit hyperactive disorder (ADHD) and or obsessive compulsive disorder (OCD). A smaller number have a tendency toward general impulsivity or even Autism Spectrum disorder or Intermittent Explosive Disorder.
"We don't have a cure for Tourette. We talk about learning to live with it," says Himle. "The first step is to treat those comorbidities, then we can sort out what symptoms are the Tourette's and which aren't."
There are medications to treat Tourette-related symptoms, and for years they were the only treatment available. Unfortunately, the medications in question can have serious side effects and so, unless tics are causing direct harm to the patient or significantly interfering with daily life, currently the recommended first option for treatment is Comprehensive Behavioral Intervention for Tics, or CBIT (pronounced See-bit).
New Hope Through CBIT
"Clinical trials show that for many patients, CBIT can be nearly as effective as even some of the 'heavier-hitting' medications," says Himle. "And the positive effects tend to be lasting in the long-term."
Unfortunately, access to CBIT is limited. According to Himle, a survey of Tourette families showed that most patients had never been exposed to the therapy simply because no specialist in their area was trained to offer it.
To combat this lack of access, Himle, with support from the Tourette Association of America (TAA) travels extensively in an effort to train therapists in the application of CBIT. To date, this program has trained over 300 therapists internationally.
"That's just scratching the surface, though," says Himle. "Most of those are in academic medical centers, so they're concentrated in cities. That leaves a lot of underserved territory out there."
That's why Himle is searching for ways to broaden the reach of CBIT. The therapy has been shown to be effective when administered online with video call technology.
Himle is also currently involved in the clinical testing of an interactive online program, TicHelper, to teach the basics of CBIT to patients and their families. Though not a replacement for the intervention of a trained therapist, the method shows promise in helping patients while they seek a more permanent treatment solution.
Support Through Groups, Education
Beyond CBIT, patients with Tourette may also benefit from occupational therapies. Many see benefits from the education and support services offered by the Center for Excellence.
When Brooklyn was first diagnosed, she had some success with CBIT. Brooklyn and her family also credit Eva Tukuafu, who acts as the center's resident social worker in addition to her duties as program manager, with helping them to navigate the world of living of with Tourette.
"We attend the Center's support group religiously," says Brooklyn's mother, Beckie, referring to the monthly group run by Tukuafu in Salt Lake City for families and patients living with Tourette. A similar group also meets monthly in Utah County.
"I love my friends at support group," Brooklyn adds. "I feel like I can tell them anything and they understand because they've dealt with it too."
But it's when dealing with Brooklyn's school that Beckie says Tukuafu has been invaluable.
"Last school year was really tough," Beckie says, "But this year Eva reached out to Brooklyn's teachers and conducted training before school started that has made a huge difference in how any problems are handled as they come up."
As difficult as living with Tourette can be, Brooklyn maintains a positive attitude.
"I feel like I have this for a reason. Every day, kids come up to me at school and tell me their problems and I'm able to relate and help them, and that makes me happy," she says. "If I didn't have Tourette's, I wouldn't have met all of the amazing people I've met. It's a great opportunity."