Tourette’s Syndrome: All you need to know about the neurological condition that made Lewis Capaldi struggle with his set at Glastonbury Festival 2023

In late June, Scottish singer-songwriter Lewis Capaldi struggled to complete his set on stage at the Glastonbury Festival 2023, after he lost his voice. As always, his dear fans continued to sing the song while he tried to recover from it and provided him support. However, Capaldi has announced that he will be taking a break from the stage for the unforeseeable future. The singer, who revealed to his fans in September 2022 that he has Tourette's Syndrome, also suffers from anxiety as well as mental health issues.

Capaldi has also released a statement on social media about the break. This came after he came to the festival from a previous three-week break, which he took to rest and recover. In the most recent statement on Instagram, after Glastonbury, he said, "I used to be able to enjoy every second of shows like this and I'd hoped 3 weeks away would sort me out. But the truth is I'm still learning to adjust to the impact of my Tourette's and on Saturday it became obvious that I need to spend much more time getting my mental and physical health in order, so I can keep doing everything I love for a long time to come." While Capaldi's case is more recent, in India, 2018 Bollywood movie Hichki starring Rani Mukerji has previously addressed the syndrome and has helped create awareness about it.

Mid-day Online spoke to Dr Annu Aggarwal, consultant Neurology, Specialist Cognitive and Behavioural Neurology, Kokilaben Dhirubhai Ambani Hospital Mumbai to understand more about the syndrome, its effects and how people can help.

What is Tourette's Syndrome and what is its prevalence in India?
Dr Aggarwal: Tourette's syndrome is a neurological disorder that primarily affects children and young adults. It is characterised by the presence of tics, which are involuntary movements or sounds. Tics can manifest as motor tics, involving movements like eye blinking or shoulder shrugging and vocal tics, which include sounds like humming or grunting. While complex tics, such as imitating others or uttering words or phrases can occur, they are rare compared to the more common tics seen in Tourette's syndrome.

Individuals with Tourette's syndrome may be able to suppress their tics temporarily, but this often leads to restlessness and discomfort. Eventually, they experience a strong urge to release a flurry of tics, which provides temporary relief and a sense of comfort. Tics can vary in frequency and severity by appearing, disappearing and reappearing over time.

It is important to note that tics, in general, are relatively common, with about 10-15 per cent of the population experiencing one or more tics like throat clearing. However, Tourette's syndrome itself is a specific neurological condition and is estimated to affect approximately 1 per cent in 1000 teenagers.

What are the causes of Tourette's Syndrome?
Dr Aggarwal: The exact causes of Tourette's syndrome are still unknown. It is not a degenerative disease and most people with Tourette's tend to do well in the long term. Tics associated with Tourette's syndrome can come and go over weeks or months and they may or may not reoccur over time, spanning months or even years. It's important to note that there are various other reasons why people may experience tics that are not related to Tourette's syndrome.

In some cases, tics can be seen in individuals who have had certain brain diseases like multiple sclerosis, tumours, strokes, Alzheimer's or head injuries. Tics can also occur in individuals who are using certain substances such as cocaine or alcohol, or those affected by sexually transmitted diseases. However, it's important to remember that these factors are not the primary cause of Tourette's syndrome itself.

At what age does the onset of Tourette's Syndrome take place?
Dr Aggarwal: Tourette's Syndrome commonly manifests itself in young adulthood. Tourette's syndrome affects one out of every 100 young people. It can also affect older people; however, this is uncommon.

What are the effects of Tourette's Syndrome?
Dr Aggarwal: Tourette's Syndrome can have various effects on individuals. Apart from the physical aspects of tics, it can also impact emotional well-being and social interactions. People with Tourette's may experience embarrassment, frustration, or anxiety due to their tics, which can affect their self-esteem and quality of life.

What are the symptoms of Tourette's Syndrome?
Dr Aggarwal: The symptoms of Tourette's Syndrome primarily consist of motor tics (involuntary movements) and vocal tics (involuntary sounds or words). Motor tics can include eye blinking, facial grimacing, head jerking, or repetitive movements. Vocal tics can manifest as throat clearing, grunting, or involuntary utterances of words or phrases. In addition to tics patients can also suffer from anxiety, hyperactivity, obsessive-compulsive disorder (OCD) and depression, which can further impact their well-being.

What are the challenges faced by a person with Tourette's Syndrome?
Dr Aggarwal: Individuals with Tourette's Syndrome face various challenges in their daily lives. They often encounter difficulties in social situations, as their tics can attract attention and lead to misunderstandings from others. The stigma associated with their condition can also cause additional stress and make them feel misunderstood. Managing tics in public can be challenging, as individuals may feel embarrassed and attempt to suppress their tics, which can increase anxiety and discomfort. This often results in a sense of relief when they finally allow themselves to release the tics, but it can also lead to further embarrassment. These challenges can significantly impact their overall well-being and daily functioning.

What are the common misconceptions about Tourette's Syndrome?
Dr Aggarwal: There are some common misconceptions about Tourette's Syndrome:

1. All patients with Tourette's Syndrome swear or use obscene words/gestures: This is rare and not representative of the majority of individuals with Tourette's.
2. Tics are seizures: Tics are not seizures. They are involuntary movements or sounds, distinct from seizure activity.
3. Tics are seen in children with bad parenting or poor self-control: Tics are not caused by bad parenting or poor self-control. Tourette's Syndrome is a neurological condition and not a result of behavioural factors.
4. People can suppress their tics: While individuals with Tourette's may be able to suppress their tics for a short period, doing so often leads to increased stress and ultimately a release of tics in a flurry.
5. Tourette's Syndrome is associated with mental deficiency: Tourette's Syndrome is not associated with mental deficiency. It is a neurological condition and does not affect intelligence or cognitive abilities.

How can a person deal with Tourette's Syndrome?
Dr Aggarwal: Here's how a person with Tourette's Syndrome can deal with it:

1. Spread awareness and reduce stigma associated with Tourette's Syndrome
2. Provide counselling and boost confidence for patients and their families
3. Understand and acknowledge the fluctuating nature of tics
4. Seek medical advice for appropriate behavioural and medical treatments
5. Encourage individuals to embrace life and enjoy normal activities
6. Consult healthcare professionals and create a supportive environment

How can the family and friends of a person dealing with Tourette's Syndrome help them?
Dr Aggarwal: Family and friends play a crucial role in supporting individuals with Tourette's Syndrome. They can offer understanding, patience, and acceptance. Educating themselves about the condition can help them provide the necessary support. Being non-judgmental and creating a supportive environment can greatly benefit someone with Tourette's.

How can people recognise Tourette's Syndrome?
Dr Aggarwal: Not all people with Tics have Tourette's Syndrome. If you notice repetitive, involuntary movements or sounds that occur frequently over a period of time, it may be an indication of Tourette's Syndrome. However, it is important to consult a specialist for a proper diagnosis and evaluation.

How can schools and organisations help children and adults with Tourette's Syndrome?
Dr Aggarwal: Schools and organizations can support individuals with Tourette's Syndrome by promoting awareness and understanding among students, teachers, and staff. This can be done through educational programmes, training sessions, and creating inclusive environments.

Ever since Rani Mukerji's Bollywood film Hichki released in 2018, have you seen a lot more people become aware about the syndrome? How was it before that?
Dr Aggarwal: Rani Mukerji's film ‘Hichki' has certainly helped raise awareness about Tourette's syndrome in India. It shed light on the challenges faced by individuals with the condition and sparked conversations about inclusion and acceptance. Before the film, there was generally less awareness and understanding about Tourette's Syndrome in the country. However, it is important to continue spreading awareness and addressing the needs of individuals with Tourette's Syndrome.

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