A Grammy artist with Tourette Syndrome

Would you consider a career as a singer if you had involuntary tics from Tourette Syndrome?

Well, it apparently didn’t stop 20-year-old Contemporary Christian musician Jamie Grace.

In fact, Grace attributes singing with helping her cope with her disease.

And now she is being rewarded with a Grammy nomination for best contemporary Christian music song, Hold Me.  The song features TobyMac, who is a Grammy winning Christian recording and hip/hop artist. He saw so much potential in the young artist that he signed her to his own record label- Gotee Records, in 2010.

2 years from symptoms to diagnosis

Grace began to have symptoms of  uncontrolled movements and sounds (tics) at 9 years old, and was eventually diagnosed with Tourette Syndrome at the age of 11. She was given medication for the disease, but says that it caused her hair fall out and made her feel “like a zombie.” Her typically “bubbly” personally became more sullen and she lost her self confidence.

When she was 14, her grandfather gave her a drum set. She learned to play the drums, as well as piano, guitar, banjo and the ukulele. And she started to sing again, something she had become reluctant to do when she started to have symptoms.

Music became a way to relieve stress. And she noticed that the tics were less frequent when she was singing or playing.

After her hair fell out, God had a plan

After hearing a testimony by Christian singer Tammy Trent, Grace decided that God had a message and a plan for her- to bring a message of hope to others.

In 2006, she founded Teens with TS to help other teenagers diagnosed with the disease. “It’s all about taking control over what I can control and that’s saying, ‘Hey, I’ve got Tourette’s, but I can also play guitar, I can also sing and write songs about it” … Hopefully I can encourage other kids who are going through crazy stuff too.” The mission of Teen with TS is two-fold:

… to just tell kids that you’re not alone in what you’re going through. And I wanted to raise awareness to Tourette because kids would bully me and pick on me and strangers would often times stair at me or mock at me.

15 things to know about Tourette Syndrome

1.  Tourette syndrome (TS) is a neurological disorder characterized by tics–involuntary, rapid, sudden movements and/or vocal outbursts that occur repeatedly.

2.  Motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other vision irregularities, facial grimacing, shoulder shrugging, and head or shoulder jerking.

3.  Vocal tics might include repetitive throat-clearing, sniffing, or grunting sounds.

4.  Symptoms can change in number, frequency, type and severity–even disappearing for weeks or months at a time.

5.  Tics are often worse with excitement or anxiety and better during calm, focused activities.

6.  No definite cause for TS has been established yet, but considerable evidence points to abnormal metabolism of at least one brain chemical called dopamine.

7.  It is  estimated that some 200,000 in the United States have the disorder.

8.  The early symptoms of TS are almost always noticed first in childhood, with the average onset between the ages of 7 and 10 years.

9.  TS occurs in people from all ethnic groups; males are affected about three to four times more often than females.

10. Obscene language (coprolalia) is not a typical symptom of TS. Cursing, uttering obscenities, and ethnic slurs are manifested by fewer than 15% of people with TS.

11. The diagnosis is made by the observation of symptoms and by medical history. Blood tests and/or x-ray tests are not necessary.

12. Most patients experience peak tic severity before the mid-teen years with improvement for the majority of patients in the late teen years and early adulthood.

13. Because tic symptoms do not often cause impairment, the majority of people with TS require no medication for tic suppression.

14. Effective medications are available for those whose symptoms interfere with functioning. Medications called neuroleptics (such as haloperidol and pimozide) are the most consistently useful medications for suppressing tics.

15.  As a group, children with TS have the same IQ range as the population at large. But problems in dealing with tics, often combined with attention deficits and other learning difficulties, may call for special education assistance.

I think Jamie’s story is an inspirational one. I always appreciate when celebrities use their own illnesses as “teachable moments” for others with the same disorder.

Michele Berman is a pediatrician who blogs at Celebrity Diagnosis.

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