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I can’t just walk away from Tourette Syndrome

Hey, I’m Johanna! I’m 18 years old and live in Lititz, Pa. I’ve had Tourette Syndrome for as long as I remember, but it was very mild until age 16. My tics range from neck tics, to full body convulsions, screaming obscenities and screaming fun words like MOM BIT ME! I have to many tics to name!

The hardest part about my TS is the severity. My tics are constant, and sometimes I struggle to do simple tasks such as feed myself. TS comes in a wide-range of symptoms. Unfortunately, mine is at the very severe end.

One of my favorite things to do is bowl. Most people don’t know that with TS, no matter how bad, the tics can calm when focused. Did you know there’s a surgeon with severe TS? Yep! That’s right! When he’s performing surgery, he doesn’t tic at all!

I think people should know that Tourette isn’t a funny swearing disorder. Only 6 to 10 percent of people with TS display coprolalia, a comorbid disorder which is associated with Tourette. Tourette is a movement disorder and uncontrollable vocalizations such as grunting or humming.

My wish is that people understand we can’t help it. We can’t control it, and I promise you it bothers us more than it bothers you. At least they can walk away from it. We can’t.

JohannaJ

5 Comments

  1. hi johanna! glad to see u r writing here. JB mentioned videos…where can i see them?

  2. Hello. I’ve seen your videos on youtube through links form JaylensChallenge. You’re awesome. And I wish lots of people were educated about it instead of holding on to those stereotypical misconceptions. I hope your tics get better. Have a nice day!

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