“Sitting in class, second grade, teachers would put me outside the hallway because I had been ticking so loud I was a ‘distraction,'” recalled 25-year-old Amber Comfort. “Teachers would walk by me back and forth and say ‘you’d better stop that before you get into my class next year.’ Things that were just completely obscene, that you would never expect the world to be, and I had to deal with on a daily basis.”
From the age of five, Comfort has suffered from Tourette’s syndrome, a neurological disorder that causes her to make involuntary movements and loud noises, known as tics.
For almost 20 years, the condition has shaped every moment of her life. “I don’t remember any parts of ever being tic free,” she said. “There’s not a day that’s gone by that I don’t remember moving or making noise when I couldn’t help it.”
But she has not let Tourette’s dictate how she lives. Comfort graduated from high school with honors and was even accepted to college on full scholarship. But her uncontrollable outbursts have made it hard to continue her education or even hold down a steady job.
There is one thing that comes easy though. Singing. She loves to sing, and when she does, her tics are curiously absent.
“Singing is what gets me through a lot of hard days. When I’m on the computer, when I’m driving, when I write poetry, basically anything with a sense of focus,” Comfort explained. “When I have to worry about my tics I do just that — I worry about my tics.”
Deep brain stimulation
There is no cure for Tourette’s syndrome. But after years of suffering and unsuccessful therapies, Comfort was selected for experimental surgery by specialists from the University of Florida’s Center for Movement Disorders.
The procedure is called deep brain stimulation (DBS), where small electrodes are implanted into the brain to stimulate affected regions in patients with movement disorders such as Parkinson’s disease or tremors.
The delivery of electricity is at the root of what makes DBS work. The electrodes are attached to an impulse generator, or pacemaker, implanted under the patient’s skin, which provides electrical impulses to the affected region of the brain.
By providing impulses to circuits in the brain associated with a specific motor skill, it’s possible to change the connections between neurons and stop the abnormal activity that causes the symptoms.
DBS was first approved for tremors in 1997 and since then more than 100,000 patients have had the procedure. But Comfort’s surgery would be the first time the technique had been used for Tourette’s.
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Robert Howell and Meera Senthilingam