很多人想到的时候 妥瑞氏综合征，他们想到的是强迫性咒骂. But University of Utah Tourette's Center of Excellence Clinical Program Manager Eva Tukuafu, 垃圾, 世界基督教联合会, 解释这不是全部.
"People focus on that because it's what they see in movies and on TV,她说.
事实是，辅助性, 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).
卓越中心主任迈克尔·希姆勒, 博士学位, 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.
布鲁克林, 一个12岁的卓越中心病人, is one of many kids successfully treated and supported through the Center, 同类地区唯一的治疗资源.
难以诊断
布鲁克林 remembers the exact date her first vocal tic surfaced: November 23, 2014. 她才十岁.
“一开始，大发娱乐以为是咳嗽，”布鲁克林说.
"Early tics often manifest as coughs or sniffles,Himle说。. “它们经常被误诊为过敏."
但在百日咳测试呈阴性后, 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.
大约一个月后, 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.
从那时起, 布鲁克林还有其他特点, 她给其中一些起了“特里”这样的名字,或“杰瑞”," as if they're a rotating cast of characters dropping in and out of her life.
抽动症患者的抽动时常发生. Some of 布鲁克林's have included stomping, gasping, and coprolalia.
"I say inappropriate things at inappropriate times," 布鲁克林 admits, matter-of-fact.
治疗方案
就在中间 .5 percent and 1 percent of the population affected by the complex disorder, 妥瑞氏症的治疗方案很复杂.
据他说, 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.
“大发娱乐没有治疗妥瑞氏症的方法. 大发娱乐谈论的是学会与之共存，”希姆勒说. “第一步是治疗这些合并症, then we can sort out what symptoms are the Tourette's and which aren't."
有治疗抽动秽语相关症状的药物, 多年来，它们是唯一可用的治疗方法. 不幸的是, 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, 或CBIT（发音为See-bit）.
CBIT带来新希望
“临床试验表明，对许多患者来说, CBIT can be nearly as effective as even some of the 'heavier-hitting' medications,Himle说。. "And the positive effects tend to be lasting in the long-term."
不幸的是，进入CBIT是有限的. 据他说, 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.
来解决这个问题, 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.
Himle说：“这只是表面现象. "Most of those are in academic medical centers, so they're concentrated in cities. 这就留下了很多服务不足的领域."
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, 向患者及其家属传授CBIT的基础知识. 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.
团体支持、教育支持
除了CBIT，妥瑞氏症患者也可能受益于 职业疗法. Many see benefits from the education and support services offered by the Center for Excellence.
When 布鲁克林 was first diagnosed, she had some success with CBIT. 布鲁克林和她的家人也把这归功于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.
“大发娱乐虔诚地参加了该中心的支持小组,布鲁克林的妈妈说, Beckie, referring to the monthly group run by Tukuafu in Salt Lake City for families and patients living with Tourette. 在犹他县也有一个类似的组织每月聚会一次.
“我爱互助小组的朋友们，”布鲁克林补充道. "I feel like I can tell them anything and they understand because they've dealt with it too."
But it's when dealing with 布鲁克林's school that Beckie says Tukuafu has been invaluable.
“上个学年真的很难熬,贝琪说。, "But this year Eva reached out to 布鲁克林'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, 布鲁克林 maintains a positive attitude.
“我觉得这是有原因的. 每一天, kids come up to me at school and tell me their problems and I'm able to relate and help them, 这让我很开心,她说. "If I didn't have Tourette's, I wouldn't have met all of the amazing people I've met. 这是一个很好的机会."