is a genetic disease that is
characterized by involuntary
movements and sounds, called '
', which are very hard to suppress. The most common
physical tic is blinking, while the most common vocal tics are sniffing and
throat clearing.
Attention-deficit
hyperactivity disorder (ADHD), autism, and obsessive-compulsive disorder as
well as (OCD) may also be associated with TS.
Symptoms include physical and vocal tics. The former may involve mouth pouting, mouth
opening, head nodding, blinking, twirling, or grimacing, while the latter is
characterized by grunting, throat clearing, sniffing, or coughing sounds.
The treatment
essentially involves psychobehavioral therapies such as psychoeducation for the
patients to gain emotional stability. Medications include certain
neuroleptic drugs such as haloperidol which help
to suppress severe forms of TS, which currently has no cure.
How is Tourette's Awareness Day Celebrated?
Tourette's
Awareness Day is celebrated through various events and activities, some of
which are briefly highlighted below:
- Awareness
Campaigns: These are always very effective in igniting public interest
in the condition. For example, Tourette's Action, a charity organization
based in Hampshire, UK is conducting a campaign called Move for Tourette's which
encourages people to "get moving" by participating in sponsored physical
challenge events such as walkathons, marathons, triathlons, swimming,
cycling, and many more
- Public
Lectures: Popular lectures by renowned neurologists and psychiatrists
on the topic of Tourette's syndrome are very effective in enlightening
people about the condition, as well as clearing many misconceptions. These
talks also help to create a better understanding and empathy for those
suffering from Tourette's
- Social Media
Publicity: This is one of the most powerful technologies for reaching
the maximum number of people in the shortest time. Posting information,
stories, photos, and videos related to TS on popular social media sites
such as Facebook, Twitter or Instagram can reach millions of people in no
time.
- Illumination
of Landmarks: Lighting-up prominent landmarks is a novel way to
generate awareness and is very appealing to the eyes too. For example, the
world famous Niagara Falls and the CN Tower in Toronto, Canada are being
lit-up in 'teal', the awareness color for TS, on the occasion of Tourette's
Awareness Day
- Art
Exhibitions: Displaying artwork by Tourette's patients is a splendid
way of showcasing their talents and generating awareness about the
condition. Additionally, these events will give the Tourette's patients
much encouragement and pleasure, as well as raise money from the sales of
the artwork
- Fundraising:
There are many ways to raise funds. Some of these include cake sales,
coffee mornings, quiz nights, sponsorships for sporting events, proceeds
from musical performances, or through online campaigns
- Wearing
'Teal': The official color for Tourette's is 'Teal'. Therefore,
wearing something of this color, such as a T-shirt, wristband, awareness
ribbon, lapel pins, buttons, or shoes, will not only show support for
Tourette's patients, but also raise funds from the sales for improving
their lives
History of Tourette's Syndrome
The first recorded
Tourette's patient was Mary Hall of Gadsden, who was diagnosed in 1663 by Dr.
William Drage, an English physician and apothecary. But it was Dr. Georges
Gilles de la Tourette in 1885, who first described in great detail a cohort of
cases, which made him famous and earned him a permanent place in the annals of
Medicine.
Tourette's Syndrome: Facts & Figures
- 1 percent of children aged 5-19 years have TS with
varying severity
- 300,000 children and adults have TS in the UK
- 138,000 children aged 6-17 years suffer from TS in
the USA
- 200,000 Americans suffer from the most severe form
of TS
- Over one-third of Tourette's patients also suffer
from OCD
- First symptoms of TS usually appear in childhood
between 5-9 years of age
- Tics are regarded as the 'tip of the iceberg', with
many underlying problems
- Tics can increase or decrease in frequency, number,
complexity, and severity
- Prevalence of tics is 4.4 percent in boys and 1.1
percent in girls
- 10 percent of Tourette's patients have the swearing
tic or coprolalia
- Tourette's syndrome is not caused by bad parenting
or abuse
- 86 percent of children with TS also suffer from the
following co-morbid conditions:
- ADHD - 63 percent
- Anxiety - 49 percent
- Learning difficulties - 47 percent
- Autism - 35 percent
- Speech problems - 29 percent
- Intellectual disability - 12 percent
Latest Research on Tourette's Syndrome
Some of the latest
developments in the area of scientific research on Tourette's are briefly
highlighted below:
- Genetic
Basis of Tourette's Syndrome: A very recent major genetic study has
confirmed that many genes contribute to the risk of developing TS. The
study was led by scientists at the Massachusetts General Hospital, with
active collaboration from other US universities. The study has been
published in the American Journal of
Psychiatry.
- Medicinal
Cannabis for Treating Tourette's Syndrome: A clinical trial is ongoing
in Australia, which is evaluating the effectiveness of medicinal cannabis
(marijuana) for treating TS. The trial is being conducted by Wesley
Medical Research in Queensland, with support from the Lambert Initiative
at the University of Sydney, Australia
- App for
Tourette's Patients: The Tourette Syndrome Association of Australia in
collaboration with Torrens University Australia in Adelaide has developed
a novel app called TAC'TICS that helps to educate and create awareness
among children suffering from TS. The app has recently been launched in
schools across Australia
Life of Tourette's Patients
Tourette's syndrome
patients have a poor quality of life due to psychiatric conditions such as
depression,
anxiety, autism,
ADHD and OCD,
learning difficulties. The severity of
the tics also reduces the quality of life of Tourette's patients. Moreover,
other complicating factors include delayed diagnosis, treatment by
non-specialists, inadequate educational support, and lack of employment
opportunities. There is also a lack of understanding and compassion for
Tourette's patients among doctors, teachers and the general public. Children
suffering from Tourette's find solace only in their parents. This is because
the parents can only understand the child's misery and try their level best to
help the child cope with the condition.
So,
on
Tourette's Awareness Day, we should stop, think, and try to develop a deeper
understanding of this highly misunderstood neuropsychiatric condition, so that we can
look upon Tourette's patients with greater compassion and empathy. Moreover, we
should pool our resources together to raise funds to
provide Tourette's patients
with the practical support and social acceptance they need to lead a fruitful
and fulfilling life!
References : - Stern JS, Burza S, Robertson MM. Gilles de la Tourette's Syndrome and its Impact in the UK. Postgrad Med J. 2005; 81: 12-19.
- Tourettes Action - (https://www.tourettes-action.org.uk/)
- Data & Statistics on Tourette Syndrome - Centers for Disease Control and Prevention (CDC), USA - (https://www.cdc.gov/ncbddd/tourette/data.html)
- Yu D, Sul JH, Tsetsos F, Nawaz MS, Huang AY, Zelaya I, et al. Interrogating the Genetic Determinants of Tourette's Syndrome and other Tic Disorders through Genome-Wide Association Studies. Am J Psychiatry. 2019; 176 (3): 217- (https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2018.18070857)
- Australian First Medicinal Cannabis Trial for Tourette's Syndrome - Wesley Medical Research, Queensland, Australia - (https://www.wesleyresearch.org.au/australian-first-medicinal-cannabis-trial-for-tourettes-syndrome/)
- 2019 TAC'TICS Program - Tourette Syndrome Association of Australia - (https://tourette.org.au/2019/03/tactics/)
Source: Medindia