Dystonia Awareness Week

Advertisement

What is Dystonia?

Dystonia 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. Dystonia 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 muscular disorders.

There 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.

Dystonia 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.

Advertisement

Why is Rare Disease Day Important for India?

Rare 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.

In 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.

Advertisement

Dystonia 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 5^th to 13^th 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 syndrome 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 people.

References:

1. Dystonia Awareness Week 2018 - (https://www.dystonia.org.uk/news/dystonia-awareness-week-2018)
2. What is Dystonia? - (http://www.dystoniacanada.org/whatisdystonia)

Source-Medindia