Did you know that if everyone with Tourette’s lived in one nation, it would be the 20th most populated in the world behind Germany? It may seem like a rare condition, but the numbers will make you think otherwise.
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.cdc.gov (1)
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.cdc.gov (1)
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:
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.BMJ Journals (3)
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 how many people have Tourette’s 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.
TS population ranked alongside world 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 The Republic of 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.
|29||Republic of Touretteland||48,3600,000|
But we don’t want to stop there. If the true statistic is that 1 in 100 children has Tourette’s, this moves us up even further and juuuuust 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.
Our biggest city would be on the same scale as London, Paris and 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.
How many people have Tourette’s? Conclusion
TS numbers are between 1 in 100 to 1 in 1000. Although with better testing and more awareness, the number will surely be closer to the 1 in 100 mark. This will be seen in future studies.
Currently, worldwide numbers are between 7.8 million and 78 million.
A vast difference between the two, but over time this gap will close.
Despite the uncertainty, we know that it is a lot more common than previously believed. This should be of great relief to anyone recently diagnosed, and anyone feeling insecure after diagnosis.
It is safe to say we aren’t alone!
For information about TS associations in your country, ESSTS has a great directory to help you in the right direction. This can be viewed by clicking here.
- CDC article– MMWR- Prevalence of Diagnosed Tourette Syndrome in Persons Aged 6–17 Years — United States, 2007
- CDC.gov– Data and Statistics on Tourette’s Syndrome
- BMJ Journals– Stern JS, Burza S, Robertson MMGilles de la Tourette’s syndrome and its impact in the UKPostgraduate Medical Journal 2005; 81:12-19