Hi, I’m Kelsey and I have Tourette  Syndrome, but Tourette Syndrome doesn’t have me.

2005

2005

So, you’re probably wondering… Do I have the “cursing Tourette’s?” “Do I have a really bad case?” “Are you weird?” No, I do not have coprolalia, the proper term for the kind of Tourette’s syndrome that involves cursing.  Fortunately I have a mild case. I am very blessed because some children are not so lucky. That doesn’t mean to say that I don’t have struggles of my own.

I was diagnosed with Tourette’s at the age of 11 after showing symptoms at the age of five. What do I mean by “symptoms”? I mean vocal tics, physical tics, such as humming while I ate. Now, you’re probably thinking… what the heck… I like a good hum now and then as well! Do I have Tourette’s too?! The answer: Probably not… actually, no. I was always a happy, bubbly kid, but not only did I hum while I ate, but I cleared my throat an awful lot. Then I started skipping, but at random times. Whenever I was told to stop doing a tic, I couldn’t help but do it more.

2008

2008

When I was growing up…Tourette’s? What was that? It was not very common. My parent’s knew nothing about it, and neither did I! I was just a kid. In fact, it was so new that it was difficult finding a specific doctor who dealt with neurological disorders.

I won’t bore you with my countless doctors’ visits, and depressed ages, but I will tell you this. I used to be very embarrassed because of my Tourette’s. It was always a battle as of what to do in school… Tell my friends and peers and possibly have them make fun of me? (Which I quite often was made fun of and mildly bullied) or not tell anyone and keep it almost as a secret? Well, I chose the second and didn’t tell many people. I kept it that way for a while throughout my schooling. Certain, trusted friends knew about it, but I was NOT willing to let everyone in on my “little secret”.

2010

2010

It amazes me right now though that I am sitting here, typing with ease about having Tourette Syndrome. In fact, I am blessed to have Tourette’s. It has helped me to grow into a caring, nurturing, sympathetic person, with a big heart, and a big understanding for kids with struggles- whether big or small. I can confidently say that I am okay with having Tourette’s and sharing part of my story on our foundation website.

I am so proud that I helped start this non-profit organization with my mom and brother that raises money to give scholarships to college students who have Tourette Syndrome who need some financial help. When I went through college I unfortunately did not have the resources to receive a scholarship for my disorder (yes, it’s a neurological disorder). So my mom and I are giving back to those who need it! I also volunteered at Camp Twitch and Shout this past summer up in Georgia. It’s a camp for children ages 7-17 with Tourette’s syndrome. I was honestly kind of nervous because I had never been around other people with Tourette’s before, so it was definitely  a new experience, and a wonderful one!

2015

If you have any questions, comments, or concerns about my Tourette’s, please feel free to comment below. I’d be more than happy to answer questions. I’m not shy at all with my Tourette’s anymore, so start sending those messages!

Thanks for reading!

Kelsey Diamantis