Stories from 4 famous people with Tourette syndrome

Let’s start by understanding what Tourette syndrome is. It’s a neurological disorder characterized by involuntary and repetitive vocalizations, sounds, and movements known as tics. Importantly, these tics are neurological in nature, meaning that individuals with Tourette syndrome have no control over them.

There are two main categories of tics associated with Tourette syndrome: vocal and motor. Vocal tics may involve actions like sniffing, throat clearing, tongue clicking, grunting, or, in rarer cases, the utterance of socially inappropriate words or phrases. Motor tics, on the other hand, can manifest as eye blinking, shrugging, nose twitching, head jerking, facial expressions, touching objects or people, spinning around, imitating someone, or jumping up and down.

Numerous well-known individuals, from actors to pop stars, have openly discussed their experiences with Tourette syndrome. Here are a few notable figures:

Lewis Capaldi

  • The Scottish musician received a Tourette syndrome diagnosis in September 2022. Following his diagnosis, Lewis made efforts to continue performing, but it eventually took a toll on his mental and physical well-being. After struggling through his Glastonbury performance, Lewis announced to his fans that he would be taking an indefinite break from performing and singing. His documentary, ‘Lewis Capaldi: How I’m Feeling Now,’ available on Netflix, provides further insight into his journey with Tourette syndrome.

Billie Eilish

  • American singer Billie Eilish was diagnosed with Tourette syndrome at the age of 11. In 2022, she sat down with David Letterman on his Netflix show, My Next Guest Needs No Introduction, to discuss her experiences living with Tourette syndrome. When describing her tics, she expressed, “I never don’t tic at all because the main tics that I do constantly, all day long, are like, I wiggle my ear back and forth and raise my eyebrow and click my jaw … and flex my arm here and flex this arm, flex these muscles. These are things you would never notice if you’re just having a conversation with me, but for me, they’re very exhausting.”

Dan Aykroyd

  • Best known for his roles in Ghostbusters and The Blues Brothers, Dan Aykroyd has been an advocate for Tourette syndrome throughout his illustrious career. The actor was diagnosed with physical tics that caused him to grunt when he was 12 years old. He sought therapy, which helped alleviate his symptoms.

Baylen Dupree

  • While not a pop star or actor, Baylen Dupree has nearly 9 million TikTok followers and has used social media as a platform to raise awareness about Tourette syndrome. She emphasizes that the condition manifests differently for everyone. Baylen experiences what’s known as coprolalia, which involves uncontrollable swearing and gestures. It’s important to note that only 10-15% of individuals with Tourette syndrome experience coprolalia. Baylen has shared numerous TikTok videos where she occasionally utters socially inappropriate words, providing insight into how she navigates social situations. (Language warning!)

At Trusted Care & Support Services, we understand the significance of raising awareness and supporting individuals with conditions like Tourette syndrome. We are committed to providing inclusive and compassionate care to NDIS participants, ensuring that their unique needs are met and that they can lead fulfilling lives