- Dystonia is a rare disorder characterized by involuntary painful muscle contractions affecting various parts of the body.
- Dystonia awareness week 2017 celebrated from 29th April to 7th May aims to raise awareness and raise funds for dystonia research.
- The theme ‘go green for dystonia’ urges persons to wear green or even streak the hair green to show solidarity and to get involved in fundraisers and other events to spread the word about this condition.
Dystonia Awareness WeekDystonia awareness 2017 is being celebrated from 29th April to 7th May. During this week, many fundraisers such as marathons, walkathons, parties and sales are organized to spread the message and correct misconceptions about this painful and debilitating condition.
'Go green for dystonia' is the theme for dystonia awareness week. Participants and volunteers dressed in green get involved in events that would help to raise awareness. Distributing flyers, putting up posters or a stall in public places such as malls, marketplaces and parks. Holding sales and collecting donations and contributions from the public are some means of raising funds to promote research and scientific studies about dystonia, a condition about which little is known.
Dystonia - Facts and Figures
- Dystonia refers to a group of disorders characterized by involuntary muscle spasms that make the person assume abnormal postures or abnormal movements.
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- It is the third most common movement disorder after essential tremor and Parkinson's disease.
- Currently, it is estimated that there are at least 70,000 dystonia sufferers in the UK alone and over 300,000 estimated to be living with dystonia in the US.
- It is a painful and debilitating condition, not to mention the embarrassment and social stigma faced by dystonia sufferers.
- Very often, it is mistaken for a psychiatric condition, where correct diagnosis and initiation of treatment may take years.
- The cause of dystonia is not known and many theories have been put forward such as genetic mutation, brain injury, drugs and toxins and metabolic disorders.
- Dystonia is not a life threatening disease nor does it affect the lifespan.
- There is no cure for dystonia. However it can be effectively managed with medications such as botulinum toxin, surgery and other forms of treatment.
Living and Coping With DystoniaDystonia is a difficult condition to live with and treatment is challenging. It requires the concerted efforts of health professionals, family and friends to make the life of affected people better.
- Medications such as botulinum toxin repeated every 3-4 months may offer some relief. Drugs that target the neurotransmitters such as carbidopa-levodopa have also been tried.
- Physical therapy for relief of muscle spasm
- Speech therapy if voice is affected
- Massage therapy and stretches to improve muscle pain
- Pain management to treat the chronic pain associated with dystonia
- Deep brain stimulation to control muscle contractions
- Selective denervation for dystonias that are difficult to treat
- Stress relief measures such as meditation and deep breathing
- Yoga which combines the benefits of breathing, meditation, postures and stretches
- Biofeedback techniques
- Psychological counseling for anxiety and related disorders associated with this condition
Dystonia Support Groups and OrganizationsIt is important to learn as much as we can about this condition in order to bring hope and cheer into the lives of dystonia patients. Many organizations and support groups are doing their bit to educate the population and improve the life of people with dystonia. Some of these organizations and their web address is provided below:
- Dystonia Medical Research Foundation - https://www.dystonia-foundation.org
- The Dystonia Society - www.dystonia.org.uk
- Australian Dystonia Support Groups - https://www.dystonia.org.au/
- The Dystonia Society - (http://www.dystonia.org.uk/)