I keep looking back to my childhood, wondering if I knew something was different about me before my diagnosis.
But what is ‘abnormal’ behaviour to a child?
My earliest memories are woven between symptoms of Tourette. Not that I knew that back then. I remember it being stressful, but so was being stung by a wasp and falling off my bike. It was just another experience in this crazy new thing called life.
It was only when my parents started to notice my behaviours that I began to understand that my brain was a little bit different, and this began a long journey of discovery and adaptation.
I was born in 1989, but I still remember my earliest tics very well. My mum worked nightshift, and in the middle of the night I would jump into bed with my dad. It couldn’t have been a great night sleep for dad, as I’d spend half the night climbing in and out of bed.
Dad: “What are you doing?”
Me: “I’m biting the carpet”.
Dad: “Why?!?!”
Me: “I have to”.
My mum would look after my sister and I during the day, after what was probably just a few hours sleep working as a care nurse. My strange behaviours were present during the day too, manifesting in different ways. With some knowledge of Tourette syndrome, my mum sought advice from the school and family GP.
The diagnosis looks to have been confirmed on the 16th April, 1999. I can see this from the five documents I received when I requested my medical records around the Covid pandemic.
Around 1999-2001, I travelled from my small village up to Newcastle regularly. A 45 minute journey, which seemed an eternity thanks to constant travel sickness.
The following quote is from a document sent from my Consultant Paediatric Neurologist to a Consultant Paediatrician, part of five documents I have in my medical records:
"Many thanks for asking me to see 9 year old Samuel who I agree has the Tourette syndrome. Over the past 18 months the parents have noticed that Samuel has developed a variety of tics which include repeated blinking of the eyes, head jerks, facial twitches, jerks of his arms and legs which are worse when he is tired in the evenings. He also makes a variety of vocal tics which include screeching sounds, grunting, belching and uttering obscenities including 4-letter words."
Because these movements and sounds are the reason I was evaluated, this seems the most logical place to start in this article.
There is so much more going on in a Tourettic brain, but the movements and sounds are the main reason parents know something needs addressing.
Understanding tics
In short, tics are the movements and/or sounds someone with Tourette Syndrome (TS) carries out.
I created this article- if you want to take a look- that highlight’s the crazy amount of tics experienced over a lifetime, provided these tics occur very few seconds on average.
WebMD states that:
"There are two types of tics -- motor tics and vocal tics. These short-lasting sudden movements (motor tics) or uttered sounds (vocal tics) occur suddenly during what is otherwise normal behavior. Tics are often repetitive, with numerous successive occurrences of the same action."
This certainly describes the behaviours that led to my diagnosis. Looking into motor and vocal tics, it becomes apparent that there are subcategories to both.
Motor and Vocal Tics
So far, I have found the following subcategories for motor tics:
- Tonic (tightening of muscles)
- Clonic (sudden, brief, repetitive movements)
- Dystonic (abnormal postures and prolonged movements)
- Copropraxia (making obscene and inappropriate gestures)
- Coprographia (writing or drawing obscene or inappropriate words, phrases, or images)
Vocal Tics seem to consist of:
- Random words and/or phrases (non-swearing)
- Coprolalia (swearing and obscene phrases)
- Echolalia (repeating words and/or phrases said by others)
- Sound and action-based tics (e.g. coughing, laughing etc)
If you recall the witch-hunters book Malleus Maleficarum from my article The History of Tourette syndrome, the earliest written account of what could be considered copropraxia or coprolalia dates back to the year 1487. Pretty fascinating to know people struggled with tics then, and it isn’t just some recent phenomenon.
Simple and Complex Tics
Tics can also be categorised as simple or complex.
This doesn’t necessarily refer to the severity of the tic, or how often a specific tic occurs.
It comes down to how many muscles are being used in the process, with some focus on duration and if there are thoughts involved in the movements and/or sounds.
Mayo Clinic defines both simple and complex tics.
"Simple tics: These sudden, brief and repetitive tics involve a limited number of muscle groups."
Some examples of simple motor tics are blinking, head nodding and shoulder shrugging. Short, sudden movements in one area of the body.
Simple vocal tics are similar, but with sound. Whistling, humming and grunting are common examples of simple vocal tics.
Complex tics involve more muscle groups:
"Complex tics: These distinct, coordinated patterns of movements involve several muscle groups."
Complex motor tics were described in the following document between specialists during my diagnosis. It seems that during this time my tics became more frequent, and more complex in nature.
The following quote is from this document:
"In addition to the muscular tics which effect his eyes, his face, his head and his hands there are also some quite complex movements which as you say seem to have an obsessional quality, although Samuel maintains that he has very little control over them. Some of these "tics" are quite risky, For example, he feels obliged to put his fingers in the crack of any door when it is closing and removing them at the last moment. Similarly, he feels an obligation to scrape the back of his hand along the floor, with the result that it has become quite sore and scarred. Another complex movement is that whenever he gets into the car he has to kiss the back of the seat on which he is sitting. Samuel is quite unable to give any explanation as to why he carries out these movements which are variable in their intensity. They are also "shifting", for a few weeks he will scrape the floor then when this stops some other complex movement replaces it."
Complex tics seem to (sometimes) involve thought processes, at least in my experience. For example, I remember having to put my fingers in the cracks of doors because of the risk involved. My brain would register a specific action that would increase the risk of injury and then I simply had to do that action.
Tics that have an 'obsessional' quality
I wanted to add a segment here regarding tics of this nature. I want to do so because I feel it is something a huge chunk of the Tourette community can relate to, and experience daily. For some, tics aren’t just an involuntary action, they have deeper meanings or thought processes behind them.
OCD is often a co-occurring condition for individuals. According to this International OCD Foundation article:
Up to 60% of TS sufferers have been reported to have OCD symptoms, 50% of children with OCD are reported to have had tics, and 15% met criteria for TS.'
A huge number of people seem to experience both Tourette and OCD concurrently. Examples from my experience are reversing ‘bad’ thoughts with ‘good’ ones. This could involve saying a ‘nice’ thing out loud- similar to vocal tics- to register it as a ‘cancelling out’ of the bad thought.
I call these ‘phantom tics’.*
If I have three blinking tics in a row, a fourth obsessional tic may be carried out due to my dislike of odd numbers. The fourth tic wasn’t an intense urge to do the action like the first three were, it occurred because I would not feel comfortable doing only three tics.
Tourette and OCD isn’t always possible to tell apart. A more accurate term to describe behaviours combining both Tourette and OCD is Tourettic-OCD.
Tourettic-OCD is a relatively new term, and as far as I am aware, isn’t officially recognised. I have published an article dedicated to this phenomenon below if you want to read it.
*I decided to Google ‘phantom tics’ in case it was already being used in the community. It turns out it is, but meaning something else.
PubMed has an article on tics that are carried out not because of an internal urge, but an urge felt outside the body:
"We report a patient whose sensations associated with tics were felt in other people and in objects. The discomfort associated with his out-of-body sensations was temporarily relieved by touching or scratching the object involved."
This sounds very similar to my urge to touch the floor, or cracks of doors as described in my diagnosis documents. Are these examples of phantom tics? Maybe so.
Tourette doesn't always involve swearing
The belief that everyone with Tourette swears is a false. There are a few reasons as to how this myth may have occurred.
When I was in high school I remember watching a comedy sketch on someones phone. This video consisted of an animated character being driven home from school by his dad. The kid began to insult his dad by swearing and cursing, claiming he had Tourette’s. It’s safe to say the dad wasn’t happy.
Now I don’t doubt the kid in this sketch had tics, he did struggle to hold them in. I’ve seen far worse ‘attempts’ of humour on TikTok from people pretending to have the condition and failing badly.
Anyways this video went viral and I heard people talking about Tourette’s a lot more after that.
Coprolalia as mentioned earlier, is the name given to tics that involve swearing. Often seen as bizarre, comedic and simply shocking, it isn’t a surprise the media picked up on it, focusing all their attention on individuals experiencing tics of this nature.
CDC states the following on swearing tics:
"Known as coprolalia, this only affects about 1 in 10 people with Tourette. Coprolalia is a complex tic that is difficult to control or suppress, and people who have this tic often feel embarrassed by it."
It is interesting to read that the CDC considers swearing in general a complex tic. They know more than I do, but I always considered one-word-utterances a simple tic, similar to tics only involving one muscle group. I assumed phrases or complete sentences were more of a complex tic.
Tics aren't always Tourette
Everyone with Tourette has tics, but not all tics are due to Tourette syndrome.
To be diagnosed with Tourette, there has to be both motor and vocal tics present. These have lasted longer than a year.
Tourette is different to other tic disorders, and we will get into these differences here.
The DSM-5 (1) classifies three main types of tic disorder:
- Provisional Tic Disorder
- Persistent (Chronic) Tic Disorder
- Tourette’s Disorder
They give us a clue to their nature in the name… apart from Tourette. This name doesn’t really stick to the theme.
This is because Tourette syndrome is named after the neurologist that published studies of tics in 1885. Georges Gilles de la Tourette.
Who decides on the criteria?
The DSM-5 was briefly mentioned above, this publication describes the tic-disorders that are diagnosed today.
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) is published by the American Psychiatrics Association and the most up to date publication.
The DSM classification is used to diagnose various mental disorders. It will help us understand what each of these tic disorders consists of and what makes them unique.
What makes tics Tourette syndrome
For tics to be classed as Tourette:
- Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently
- The tics may wax and wane in frequency but have persisted for more than 1 year since first tic onset
For Tourette to be diagnosed, both motor and vocal tics need to be present in an individual. They need to have lasted at least one year.
What makes tics Persistent (Chronic) Tic Disorder
- Single or multiple motor or vocal tics have been present during the illness, but not both motor and vocal
- The tics may wax and wane in frequency but have persisted for more than 1 year since first tic onset
- Criteria have never been met for Tourette’s disorder
Instead, it is either motor or vocal tics. These can be simple or complex.
These have to be present for more than a year after the tics started and the person must have not been diagnosed with Tourette previously.
What makes tics Provisional Tic Disorder
Provisional basically means temporary, and to be possibly changed later.
Provisional Tic Disorder is:
- Single or multiple motor and/or vocal tics
- The tics have been present for less than 1 year since first tic onset
- Criteria have never been met for Tourette’s disorder or Persistent (chronic) motor or vocal tic disorder
Provisional Tic Disorder can be diagnosed if tics have lasted less than one year.
These can be simple or complex, and be both motor and vocal tics.
Provisional basically means temporary– and this diagnosis can change if the tics last longer than the year needed to diagnose Persistent Tic Disorder or Tourette.
Current disqualifying factors
The DSM-5 also states that these tic disorders can be diagnosed only if:
- Onset is before age 18 years
- The disturbance is not attributable to the physiological effects of a substance or another medical condition
The age qualification is interesting, because more and more people have been experiencing a sudden onset of tics, even in adulthood.
Whether this age criteria remains will have to be seen.
Numerous conditions, medications and drugs can cause tics or tic-like symptoms, that are not tic-disorders. This is why certain conditions and substances can rule out a diagnosis.
Source:
American Psychiatric Association. Desk Reference to the Diagnostic Criteria : from DSM-5 by American Psychiatric Association.
A sudden onset of tics
Wired ran an article in March 2021 about young girls in particular asking for advice after developing tics.
It’s fascinating to learn about the sudden onset of tics so many people experienced around the time of the Covid pandemic.
Whether this is the pandemic, social media or something else entirely… it is something that needs a lot more research.
I was diagnosed with Tourette’s as a kid, however during the pandemic I have seen an increase in my own tics. Particularly my motor tics.
Fascinatingly, boys tend to be diagnosed more regularly with Tourette Syndrome, as is true for many other neurological disorders.
Are people watching videos about Tourette’s and being affected? It is well known that sufferers do tend to have increased tics when reading or watching other sufferers.
Vice ran an article about Great Ormond Street Hospital seeing an ‘explosion of tics’, with young girls being referred more frequently than ever before.
The difference between wanting and needing to tic
We don’t want to tic, in the same way we don’t want to scratch an itch. It’s more that we have to.
By carrying out the tic, the uncomfortable feeling before it goes away. But only temporarily.
Tics come and go like itches do. Some stronger, some weaker. Every second or every minute. But before the tic there is often a feeling driving it.
The premonitory urge.
The premonitory urge
Tics can seem ‘out of the blue’ to onlookers. This is because there are little-to-no external signs of an oncoming tic. The urge to tic often comes from a sensory urge or ‘itch’ within.
This ‘itch’ is more mental than physical, but acts in the same way. The itch comes, it stays until you either wait for it to leave or scratch it.
Tics have also been described as hiccup-like. Some people describe a buildup of physical pressure inside the body.
Voluntary or involuntary?
The NHS in the UK describes them as involuntary:
"Tourette's syndrome is a condition that causes a person to make involuntary sounds and movements called tics."
The CDC states that sufferers cannot prevent tics:
"Tics are sudden twitches, movements, or sounds that people do repeatedly. People who have tics cannot stop their body from doing these things. For example, a person might keep blinking over and over. Or, a person might make a grunting sound unwillingly."
It seems that the many medical definitions are in agreement.
Involuntary may not be the best description
Imagine someone robbing a bank.
The robber goes in and demands money from the bank teller.
The bank teller, clearly under huge pressure to give money, voluntarily hands the money over to the robber.
Although the worker voluntarily handed the money over, they were left with very little choice.
It would be unfair to say the employee voluntarily handed money over, although they did. The employee’s job would probably be safe during an investigation.
Although the money was given voluntarily, there was incredible pressure to do so.
For some (but not all) of tic sufferers, this is an accurate way of describing the feeling of having to do a tic.
Voluntary, with a lot of pressure to do so.
The urge before the tic is involuntary, the tic itself can be voluntary
Another way to describe tics would be like scratching an itch.
We can all agree that the sensation of an itch is both unwanted and involuntary. It just happens from time to time.
Scratching that itch however, that is voluntary.
A tic can be described as a voluntary action to relieve an involuntary, sensory urge.
Some people don’t feel a premonitory urge. A tic feels much more immediate and sudden.
The NHS states that:
"Most people with Tourette's syndrome experience a strong urge before a tic, which has been compared to the feeling you get before needing to itch or sneeze."
As a sufferer, this seems accurate. I do find myself going to the itch comparison over the sneeze comparison however.
An itch better describes a voluntary movement to rid an unwanted urge, similar to my experience with tics. I can often control the tic and hold it in most of the time. It isn’t totally involuntary.
The only involuntary aspect is the premonitory urge that makes me want to do the tic in the first place.
Describing this urge
It can feel like static. Like a fuzzy tickly feeling under the skin. it can feel like a dull ache in certain parts of the body.
Some people don’t experience a feeling before a tic
Some people may find the sneeze analogy more suitable, as the tic feels much more involuntary and sudden.
A tic may feel like it happened to us, more than a voluntary action. I have noticed this myself when looking back on videos, noticing way more tics than I acknowledged at the time.
Think about being with friends, enjoying deep conversation. Imagine if it was being filmed to look back on. Notice how many times you scratch an itch, from the obvious instances to the more subtle touches.
It is realistic to assume that some of those scratches were done subconsciously. We do it so often our body does it without thinking. The same when we sleep.
For some, tics feel much more involuntary and unexpected.
Studying the premonitory urge
Jade-Jocelyne Zouki is a PhD candidate researching functional brain connectivity and Tourette syndrome at Deakin University in Melbourne, Australia.
Jade-Jocelyne kindly answered some questions for Dealing with Disorder, on the technology and methods used to better understand the premonitory urge.
For a deeper understanding of the urge, you can read the article here.
What is a 'syndrome'?
Tourette has a longer, more interesting name. The full name is Gilles de la Tourette’s syndrome.
‘Gilles de la Tourette‘ is the neurologist that the condition is named after. ‘Syndrome‘ helps us understand what we are dealing with.
According to Merriam Webster, a syndrome is:
1: a group of signs and symptoms that occur together and characterize a particular abnormality or condition 2: a set of concurrent things (such as emotions or actions) that usually form an identifiable pattern
Okay so their first definition doesn’t help clear things up for me. I still struggle to understand how a disease differs from this.
The second definition helps me more. It seems here that it isn’t just bodily sensations, pains or reactions that define a syndrome. It can also be behaviours.
What I take from this is; a disease is a condition that affects the normal functioning of our bodies and minds. It is something we can point to and say- this isn’t normal and we need to fix it.
We know how it could have developed there. We know how the body should look without it and therefore the aim is to get it out of the body. Disease is only harmful with no positive effects.
I think of disease like ice on a road. We know how the road should look without ice. We know the dangers of ice on a road and the aim is now to remove the ice.
A syndrome is a collection of factors that we can identify, however may not have an identifiable cause.
Those with syndromes can live happy, healthy lives, and (in Tourette Syndrome at least) doesn’t reduce life expectancy on it’s own.
It is harder to pinpoint a syndrome. You can’t look into an MRI scanner and say ‘ah, that’s Tourette syndrome!‘ as nothing will show up. Instead, it takes longer to diagnose and is usually diagnosed through a persons behaviours.
I now think of a syndrome like a rocky road.
For a truck driver it doesn’t cause problems. For the delivery person riding a bike with a fresh pizza in their bag, it’s not so easy.
Each individual has a different experience– and with that- different strengths and weaknesses.
It is harder to distinguish where the road ends and the open land begins, similar to pointing out Tourette syndrome in a persons behaviours.
Is Tourette a disability?
Tourette is indeed a condition that affects movement, senses and activities. For some more than others.
Some people struggle with activities such as driving, cooking or playing sports. Others are fine with such activities, but repetitive tics cause injuries or long term damage to the body. This can impair movement.
It is easy to understand the limitations as a sufferer. But the limitations being recognised by authorities is another challenge altogether.
According to Tourette Association of America, many Americans ‘are able to receive disability benefits’.
Tourette’s-Action in the UK states that ‘TS is considered a disability under UK law, which prohibits people with the condition being discriminated against because of it.’
They have a useful factsheet available to read in the link above if you want to read it.
According to tourettes.org.nz, New Zealand’s Ministry of Health does not recognise Tourette Syndrome as a disability.
This was a shock to me, however a reminder that Tourette’s awareness is so important.
Some countries consider TS a disability if it affects day to day life.
This leads me to believe that it is sometimes considered case by case, similar to driving with Tourette’s. It isn’t a one-size-fits-all.
Tourette may not be classed as a learning disability as the syndrome does not impair intelligence directly.
But there are many factors that can disrupt learning, many seen in the poster above.
Tourette’s Action states that:
"Tourette Syndrome (TS) is not a learning disability but some of the symptoms and co-occurring conditions can have a substantial impact on a child’s ability to learn. It is important that children with TS are properly supported at school to help them reach their full potential."
The UK charity has great information on their ‘Information for Teachers‘ page, that can be viewed here.
Treatment, but no cure
The CDC states the following:
"Although there is no cure for Tourette Syndrome (TS), there are treatments to help manage the tics caused by TS. Many people with TS have tics that do not get in the way of their living their daily life and, therefore, do not need any treatment."
The NHS in the UK says something similar:
"There's no cure for Tourette's syndrome and most children with tics do not need treatment for them. Treatment may sometimes be recommended to help you control your tics."
It seems treatment is the way forward when managing life with TS.
The NHS also says that ‘There’s no single test for Tourette’s syndrome. Tests and scans, such as an MRI scan, may be used to rule out other conditions‘.
Treatments seem to vary just as much as the tics, making it difficult to find a universal treatment, let alone a cure.
Why do treatments vary?
According to this NIH article, various factors make treating Tourette difficult:
"Studies are challenged by the complexity of the disorder, the periodic waxing and waning of symptoms, the presence of associated comorbidities (e.g., ADHD and obsessive-compulsive disorder), and the lack of definitive target receptors for treatment."
Most of us with Tourette experience the waxing and waning of tics mentioned in the quote.
The constant change in tic severity may make it difficult to prescribe a certain dosage of medication day to day.
The comorbidities mentioned may be worsened by certain medications also.
I once visited a neurologist as I needed help for both ADHD and my tics getting worse.
He basically said (if I recall correctly) that Tourette is an overload of dopamine in areas of the brain, and ADHD is a lack of dopamine.
Taking medication for ADHD would flood the brain with dopamine, including the areas with the dopamine overload related to tics. This would increase tics significantly.
This helped me realise that certain medications used to treat conditions may make other conditions worse.
The complexity issue
The complexity of the condition leads many charities and organizations to focus on improving the lives of those with TS and not waiting for a cure.
Tourettes Action’s Managing Tourette Syndrome page states the following:
"Some treatments and therapeutic approaches aren't for everyone, and with each being approximately 50% effective, it's important that every individual makes choices for themselves or their child, based on their personal experience."
Although preventing tics would be ideal, the focus currently is to improve the lives of those living with TS.
Education is equally important, ensuring the general public is aware of the realities of life with TS, without the stereotypes and myths surrounding the condition.
Until there is something close to a cure, creating a society that allows people with TS to thrive and feel accepted is the next best thing.
How many people have Tourette?
Studies show that up to 1% of the population may have Tourette’s Syndrome. The current world population is 7.8 billion, meaning that up to 78 million people may have Tourette’s around the world. Current figures are between 1 in 100 and 1 in 1000.
In order to understand how many people have Tourette’s, we need to look at the studies.
Current estimates of 1 to 30 per 1,000 people
Because some people are undiagnosed, getting an accurate number is very difficult. Depending on the study, estimates are between 1-in-100 to 1-in-1,000.
The below quote comes from this cdc.gov article, highlighting the difficulty in measuring how many have TS:
"Worldwide estimates of TS from population based studies have ranged from 1 to 30 per 1,000 persons. This wide variation likely results from differences in sample size, population source, sample age, diagnostic criteria, and study methods (e.g., parent report, teacher report, and direct observation). TS prevalence described in recent community-based studies ranges from 3.0–8.0 per 1,000 persons."
Because of the numerous ways children get diagnosed, studies vary. Some children are unable to receive the same specialist service, and may not get diagnosed at all:
"The detection and diagnosis of TS is less likely for children with limited access to specialty health-care services. Thus, the observed survey based prevalence of 3.0 per 1,000 likely is an underestimate of TS prevalence in children. Results from community-based studies that independently evaluate children for TS and do not rely on parent-reported diagnosis invariably identify cases that were previously not diagnosed."
Estimates between 1 in 100 to 1 in 360 children
Studies that included children with diagnosed and undiagnosed TS estimate that 1 in every 162 children has Tourette’s, a percentage of 0.6%. A CDC study (using parent reports) of children between 6-17 years old shows that 1 in 360 children (0.3%) has TS (2).
Estimates that 1 in 100 children have TS has also been documented, such as this from a British study (BMJ Journals (3):
"Two pilot studies followed by definitive studies suggested that Tourette’s Syndrome was much more common than previously thought, with a ball-park figure of about 1% of schoolchildren between the ages of 5 and 17 years. This figure of 1% refers to a condition of wide severity including cases of motor and vocal tics of such mildness to be of no concern to the individual or others."
The number increases when taking into account individuals with a mild case of the syndrome. Some people with TS may never get diagnosed, as the frequency of tics is considered too low, or not a cause for concern in daily life.
Does Tourette depend on nationality?
It seems that anyone of any nationality can have TS, although diagnosis may be more difficult in countries where TS is not researched as much.
The CDC study above concludes that ‘non-hispanic white children are twice as likely to have a TS diagnosis as Hispanic and non-Hispanic black children’.
There isn’t enough research to suggest whether this is genetic or whether certain groups have had less access to the necessary healthcare for diagnosis.
It would be logical to assume that every region of the world has an equal number of TS cases, and no study has shown this to be inaccurate.
It is however true that males are more likely to have TS, with a ratio of males to females being around 4:1. This could be due to a difference in genetic, hormonal and environmental factors, but it is still unclear.
Tourette worldwide population vs nations
If the rate around the world were as low as 1 in 1000, those with TS would roughly make up 7.8 million of the worlds population.
This puts Touretteland (yes, I just named it) right above Hong Kong in the ranks.
Not a bad start.
However if the number of cases is 1 in 162, this gives our little island nation a more impressive population of 48,360,000. Internationally this moves us up the rankings and into the top 30, between Kenya and Colombia.
But we don’t want to stop there. If the true statistic is that 1 in 100 children has Tourette, this moves us up even further and into the top 20. Germany would be positioned just above us in 19th place, with France in 21st place. Our population would reach 78 million.
A country populated enough to have multiple major cities. Our biggest city would be on the same scale as London, Paris or New York City.
Taking into account a reduction of tics in adulthood
It is believed that half to two thirds of children will see a significant reduction in tics going into adolescence and early adulthood. Some see TS disappear altogether.
In this worst case scenario (or best case, depending on how you look at it!), 52 million people would no longer show signs of tics as they age. This would leave our island nation with about 26 million inhabitants. Not a small number by any means, but significantly reduced compared to our earlier figures.
Some people still show some signs of TS as they age, and as rare as developing TS in adulthood is, it is possible.
Moving forward
The Tourette Association of America, the largest organization in the world supporting Tourette funding and research, has the following to say on their 50-year anniversary and 5-year strategic plan:
"Never has the case for accelerated progress been more urgent for bold strides toward funding research due to nearly 1 million Americans suffering from some form of Tic Disorder, the gap between symptoms and diagnosis still being large, and an astounding 50% of the population still going undiagnosed."
50% of the population still going undiagnosed is unacceptable. Although the 1 million Americans statistic may now be an underestimate, it is still far too many people not getting help.
Knowing the true number may be a catalyst for change. Although treating such a large number of people will be a challenge, a stronger push for funding will aim to make this a possibility.
Co-occurring conditions
A percentage of people with Tourette also experience co-occurring conditions. Tourettes Action states that:
"up to 85% of the TS population will also experience co-occurring features and conditions. These can be just as, if not more, challenging to manage than tics."
Image credits:
Featured image: Photo by 🇸🇮 Janko Ferlič on Unsplash
Abandoned bike: Photo by KT on Unsplash
Newcastle Quayside: timsaxon- Getty Images
St. Vitus Cathedral: Photo by Matt Cramblett on Unsplash
School corridor: Photo by Poh Soo Donald Soh on Unsplash