For those who don’t know me, my name is Maya, and I was diagnosed with Tourette Syndrome in 2019. Soon after I was diagnosed, my tics became extreme: I would punch myself, slap my face, contort my body, and yell out random and sometimes obscene phrases due to tics. I had to stop going to school because I wasn’t able to do so safely. I started a new type of therapy called Comprehensive Behavioral Intervention for Tics, or CBIT, at Kennedy Krieger, where I learned how to manage my tics in a way that would allow me to fully live my life. Now, my tics are much less active but are still part of my daily life.
Even so, advocacy and awareness are very important to me. I have had my share of experiences where people have made rude or uneducated comments about Tourette, and it feels awful. No one deserves to be mistreated because of something that they cannot control. Unfortunately, this type of discrimination is the norm for many people with tics.
The Tourette Association of America has truly been a lifesaver during my journey with Tourette Syndrome. I have attended so many webinars and support group meetings and made lifelong friends through the Tourette Association. I have trained as both a Youth Ambassador and a Rising Leader, and have attended advocacy day virtually, in-person, and as a Team Leader for Maryland. These are some of my favorite days of the year because it is so incredibly powerful to share your story, meet new people doing amazing things, and know you can be a voice for people who feel voiceless.
This fundraiser is part of a movement called Transformation Teal, which aims to have every state raise money for Tourette Syndrome. This not only helps the Tourette Association continue to do research, train doctors and therapists, and run vital programs such as advocacy day and support groups, but it helps to raise awareness that helps people with tics live their daily lives without fear. Thank you!
Tourette Syndrome (TS) is a neurological disorder that causes tics. Tics are involuntary movements and sounds that can range from mild to extremely detrimental. People with TS also experience co-occurring conditions such as anxiety, depression, OCD, and ADHD. It is a very common disorder, effecting 1 in 50 children, with over 27,000 people in Maryland alone having Tourette Syndrome.
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