What is Tourette syndrome and how does it typically affect those who are diagnosed?
Tourette's is a neurodevelopmental disorder, meaning a disorder that begins during the time of brain development. It's characterized mainly by tics. And tics are sudden, rapid, repetitive movements or sounds. To meet a diagnosis of Tourette syndrome, you have to have both motor- or movement-related tics, and then also sound-related tics or vocal tics.
Some of the most common tics that we see in terms of motor tics are eye blinking, facial grimacing, shoulder shrugging and neck stretching. And some of the most common sound-related or vocal tics we encounter are things like sniffing, grunting and throat clearing.
It's diagnosed by an examination and history in the clinic by a qualified physician. We don't have a blood test or a scan that can give us a definitive diagnosis.
Lewis Capaldi was diagnosed with Tourette's in his mid-20s. What's the average age of onset for Tourette's?
Typically, Tourette's symptoms usually begin around age 5 or 6. It may go undiagnosed for several years, especially if the symptoms are subtle or mild. They might not be recognized or might be mistaken for normal behaviors or mannerisms, but symptoms typically become worse around puberty. And so often the early teenage years are the times when people with Tourette's might be most affected. So it's often around that time as well that people are being diagnosed.
In the media and movies, Tourette's is often displayed as people shouting obscenities. Is that a common part of Tourette's?
It's pretty rare. It certainly can be a symptom of Tourette's syndrome, both shouting obscenities and also sometimes making rude gestures or things like that. Maybe 10 or 20% of people with Tourette's have those symptoms. And it's definitely not required that you have those to be diagnosed with Tourette's.
Is it possible for people with Tourette's to suppress their tics?
Yes. And knowing that that's the case actually helps us make a diagnosis. Hearing that people can suppress their tics, that's a very typical feature of tics or symptom of Tourette's. Usually people can suppress their tics voluntarily for a matter of seconds or minutes, but as they do so, they often experience this increasing sense of discomfort or tension, almost kind of a desire to do the tics or perform the tics that builds the longer they suppress them.
Often people who stutter don't stutter when they sing. Are there any unusual effects like that with Tourette's?
Yes, it's actually pretty common as well for tics to disappear or become less severe when someone is at ease and engaged in something, especially if it's something they enjoy. Like painting or playing music, for example. Tics are commonly worse in situations that are stressful or anxiety-provoking. So giving a speech in front of a class or a group of colleagues, things like that.
How is Tourette's typically treated?
There is a range of treatments. The first would be behavioral interventions. There’s a particular intervention called habit reversal training, which basically is a cognitive therapy that aims to improve people's understanding of their tics and the environmental factors that affect their tics and then enhance that ability for them to suppress the tics. There are even online programs where people can do this. They sign up on a website and it basically walks them through this training at their own pace. So they may not need a psychologist or counselor.
And beyond that, there are medications that we can use to treat Tourette's. Those medications were really designed and developed as a treatment for something else – other psychiatric conditions or neurologic conditions – and have been co-opted into being used for Tourette's. So we don't have a lot of good evidence or studies to say what's the best medication or if one medication is better than another. So there's often some trial-and-error aspect to prescribing medications.
We also sometimes use Botox, or botulinum toxin, injections for tics that show up in very specific muscle groups, sometimes in the neck or certain groups of muscles that are amenable to Botox. And in severe cases, surgery – deep brain stimulation – has been used to treat Tourette's.
And how successful has that been? Can it be completely cured, or is it just suppressed?
It certainly can be reduced significantly by things like surgical interventions, but they're definitely not a cure. They probably help regulate abnormal brain activity that is leading to these tics, but they certainly don't eliminate symptoms.
How can it affect patients' mental health? Do they frequently need to be treated for physical health and mental health symptoms?
Yes, definitely. And it's very common that people with Tourette's have some sort of other mental health or psychiatric condition as well. Some of the most common ones are OCD, or obsessive-compulsive disorder, and ADHD. But depression and anxiety are pretty common too.
You can imagine that OCD and ADHD can overlap and oftentimes be mistaken or can be hard to differentiate from Tourette's because ADHD, for example, would make people seem fidgety and hyperactive and makes it difficult for them to concentrate. And Tourette's and tics can do a lot of the same things. So yes, certainly treating those as well is often part of the treatment for tics or Tourette's. And that's why being involved with both the neurologist and the psychiatrist is often helpful.
How does Tourette’s affect patients’ lifestyles?
There is certainly a broad range depending on the severity of people's tics. If they're mild or subtle, it may cause no impact in their day-to-day life. But it's pretty common that people are at least aware, if not embarrassed, or otherwise limited in daily social interactions at school or at work. Kids with tics or Tourette's may often need some sort of accommodations, breaks or arrangements that help avoid certain triggers for their tics. But I think it's also important to say that it's definitely possible for people with Tourette's to be very successful both in school and work.
Can Lewis Capaldi's public presence help kids struggling with this, and if so, how?
I think, in general, it speaks to a lot of other things we've seen recently with other celebrities or people speaking up about both medical and mental health conditions that they're dealing with, which helps put a name to it, increases public recognition, and hopefully minimizes some of the stigma accompanying Tourette's, because that's obviously a big issue as well.