- Dystonia is a
movement disorder leading to automatic contractions and spasms in the
- This leads to
repetitive twisting movements and awkward postures.
- Dystonia Awareness
week is a platform to raise awareness about this condition.
is a movement disorder causing involuntary muscle contractions and spasms.
These involuntary muscle contractions lead to repetitive twisting movements and
awkward postures. Dystonia can affect a single area in the body or affect a
group of muscles throughout the body. This condition affects children, women
and men of all ages.
is often a
secondary symptom of various other neurological disorders like Huntington's disease and Multiple Sclerosis. Secondary dystonia is far more
common than primary dystonia since it is a symptom of other neurological and
‘Dystonia is a movement disorder leading to automatic contractions and spasms in the muscles. This leads to repetitive twisting movements and awkward postures. Dystonia Awareness week is a platform to raise awareness about this common condition. People with dystonia are often perceived as unsocial and awkward and this week is a chance to sensitize the public about this condition.’
is no single diagnostic test for dystonia and doctors often diagnose through
medical history and clinical symptoms. Tests like electromyography(EMG)
or electroencephalography (EEG),
blood tests, cerebrospinal fluid analysis and genetic testing for forms of
dystonia may be used.
can often be painful and lead to mild to moderate disability. Dystonia does not
impact cognitive ability or lifespan. Currently, there is no cure for dystonia but a range of
medications are available to relax the muscles and control the spasms.
Why is Rare Disease Day Important
disease treatment has fallen through the cracks of the Indian public health
system. Indian health insurance companies do not cover rare disease treatment
or hospitalization quoting the "pre-existing clause." None of the health
policies across the state have any reference to rare/genetic disorders.
Currently, a "skewed" national policy for the treatment of rare diseases was released
in 2017. India needs a holistic rare disease policy with a robust orphan drug
act. India also clearly lacks concrete epidemiological data on rare diseases.
There are very few accurate disease registries. This creates a significant gap
in determining the disease burden. Given India's population, it is important to
get an accurate estimate of the number of people suffering from rare/genetic
disorders in order to be able to put in place prevention programmes.
this scenario, Rare Disease Day is a significant platform for making the public
as well as health sector, government and agencies aware about its myriad
complexities and need for redressal.
Awareness Week 2018
Since dystonia is a
condition with visible muscle spasms and awkward postures, it can often be
embarrassing for the person. Often people with involuntary spasms
and postures are mistaken to
be unsocial and "doing it deliberately." Dystonia awareness week has been
conceived as a platform to raise awareness about the condition and sensitize
the public. Dystonia week is observed each year from 5th
May. Patient groups and supporters across the world use this week to intensify
awareness of the condition in society. Just like any other disability,
communities need to be sensitized that people with dystonia cannot control or
stop the involuntary spasms and awkward postures. This is a medical condition
and people should be given the right accommodation just like other
disabilities. People with dystonia may face some limitations because of this
but they can participate in all activities like education, career, marriage,
socializing and being a part of society like any other person. The stigma
attached to dystonia is simply because of ignorance and lack of information about
the condition in society.
Dystonia like Tourette's
can be awkward and embarrassing for the person who
involuntarily contorts and twists his/her muscles. These feelings arise because
people around are not sensitive and a spasm may often result in stares.
Dystonia awareness week brings together people with dystonia to spread
awareness and information about this condition. It is important for people to
know that they must not engage in stares or whispers when they encounter a
person with dystonia who has involuntary spasms. Awareness week involves a
range of events like care walks, public talks, roadshows, social media
campaigns and radio announcements. Whether dystonia is primary or secondary,
our communities need to empathize with the condition and not make it more
socially awkward for people.
Dystonia is not a
contagious condition and people with dystonia have a right to engage in all
social activities. Society's negative reactions towards people with dystonia
often hold them back from being themselves and engaging actively for fear of
stares and comments. By focusing on the positive aspects and creating a level
of sensitivity, dystonia awareness week can change the negative perceptions of
- Dystonia Awareness Week 2018 - (https://www.dystonia.org.uk/news/dystonia-awareness-week-2018)
- What is Dystonia? - (http://www.dystoniacanada.org/whatisdystonia)