Why is there very little information about how to treat and manage dystonia?
Dystonia includes a variety of problems with movement
Dsytonia is a movement disorder in which people lose control of their muscles.
The movement control centre in the brain send the wrong signals to the muscles (other brain functions such as memory and intellect are not affected). This leads to uncontrollable muscle spasms and twitches that affect one or more parts of the body, causing painful and disabling movements or postures. The symptoms may range from trivial - to extremely unpleasant and disruptive.
It's estimated that at least 400,000 people in the world suffer from Dystonias.
Common types of Dystonia
Some common examples of dystonia include:
- Writer's cramp: muscles spasms of the hand and forearm make writing difficult or even impossible.
- Blepharospasm: The muscles surrounding the eye go into spasm causing constant blinking and even complete involuntary closure of the eye. In the worst cases both eyes are affected leaving the person effectively blind.
- Spasmodic torticollis: Painful spasm of the neck muscles causes the neck to twist to one side or forwards or backwards.
Dystonias may also be triggered by some medications.
A confusing problem
Dystonia can be difficult to recognize, and unfortunately sufferers are sometimes sent to see the wrong specialist - even a psychiatrist - instead of the neurologists who are able to fully diagnose and treat the condition.
Drug treatment is not always effective but may help some people. Sometimes a treatment called Botulinum toxin is used to paralyse the abnormal muscles. A variety of other treatments are being studied. Good pain relief is important, as is support and understanding from family, friends and colleagues.