Real Stories from People Living with Tourette Syndrome: Emma

I have Tourette syndrome and have lived with the diagnosis of TS for 5 years. I’ve had tics my whole life, but at 10 years old, I was finally given an answer to what I had. All the noises I made and all those uncontrollable movements, were given a name. Tourette syndrome.

One thing I have always had trouble with is telling my peers about my Tourette–even some of my closest friends. I was scared about the outcome, so I always kept the name hidden. As I’ve gotten older, the tics haven’t gone away, but I deal with them the best I can. I have HOPE. I realize that despite the challenges ahead of me, I can do this. I had 2 choices when I was diagnosed: I could play the victim or I could make the decision to live boldly with the challenges that I faced.

Five years ago, I was a scared victim of Tourette syndrome. Just one year ago, I was able to speak on Capitol Hill in Washington DC about TS. I did not let Tourette win! One thing that Tourette has done for me is given me the determination to succeed and to help others, especially my brother, Charlie, who was diagnosed with Tourette two years ago.

Since my trip to Washington DC, I have had the opportunity to talk to healthcare providers, human resources professionals, medical students, and most important, kids. Meeting the children and families with Tourette in DC was an eye opener, and I decided that I wanted to make a difference in the way people looked at me and others affected by this disease. The tools I was given in the Youth Ambassador Program external icongives me the strength to stand up and tell my story. It has been amazing seeing the way just telling my story effects people and they seem to want to understand better what makes me “Tic”. I’ve learned that Tourette will never be as strong as my will. I have chosen to deal with it, learn from it, and grow from it. Why me? Because I can.

CDC would like to thank Emma for sharing her personal story.

If you would like to share your personal story, please contact us at cdcinfo@cdc.gov