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What is dystonia?
“What is Dystonia? ”
<Symptoms>
Dystonia is when the body's muscles continue to contract involuntarily and are unable to move according to one's will.
Symptoms vary from person to person.
Localized areas such as eyes (blepharospasm) vocal cords (spasmodic dysphonia) neck (spastic torticollis) hands and arms (writer's cramp)
Systemic disease where symptoms also appear in the trunk and legs due to genetic abnormalities or drug side effects
When performing specific movements such as pianists, guitarists, and golfers (yips)Symptoms may appear in occupational situations.
<Cause>
It is thought that the cause is damage to the basal ganglia of the brain, which controls body movements, resulting in abnormalities in the central nervous system that transmits will to the muscles, but little is known about it.not here.
There are various triggers for the onset of the disease, including genetic abnormalities, mental and physical stress, trauma, side effects of antipsychotic drugs, and the influence of other diseases such as cerebral diseases.
<Treatment>
Treatments include only symptomatic treatment, including oral therapy, botulinum toxin therapy using Botox, which is known to be used for cosmetic purposes to remove wrinkles, surgical treatments such as deep brain stimulation and muscle ablation, rehabilitation, and acupuncture. It is being done.
In recent years, botulinum toxin therapy using Nerblock has also been used.
<Patient concerns>
Because dystonia is a rare disease, it often takes time to get a correct diagnosis, and because there are few specialists, effective treatment may not be available, and some patients travel far to receive treatment from specialists. .
Since treatment is symptomatic, patients must continue receiving treatment for a long period of time, and the cost burden is a burden for patients.
Additionally, because it is not recognized as a specific disease by the government, it is difficult to gain understanding of the disease at home or at work, and some treatments are not covered by health insurance.
Even if you have a physical disability that makes daily life difficult due to dystonia symptoms, with the exception of some disabilities, you will not be recognized as a disabled person and will not be able to receive support from the government.
<Patient Association>
The Dystonia Friends Association, an NPO established in 2005, disseminates information for dystonia patients, publishes newsletters, holds networking events and lectures, petitions to the Diet, and publishes translated books. .
home page dystonia2005.com