Sunday, March 25, 2007

Dystonia by any other name is still a twisting, strangling, socially isolating pain!

Two of the more uncommon types of dystonias are known as firstly, X-linked dystonia-parkinsonism, otherwise referred to as Lubag dystonia. Secondly, Rapid-onset dystonia-parkinsonism, commonly referred to as RDP. Dystonia does not only affect the person diagnosed. Family, carers and friends also share in the pains, sorrows and joys, experienced by those suffering from the many forms of dystonia, a neurological disorder or group of movement disorders for which there is presently no cure. I am writing briefly today about the two above mentioned forms of dystonia and also where to look for support close to you, wherever you may be.

Firstly, X-linked dystonia-parkinsonism or Lubag, refers to a form of dystonia that seems almost exclusively to affect men whose place of origin is Panay, an island in Indonesia. Although men are predominantly affected, it has been established that their women folk are the carriers of the gene, Xq13.

Lubag dystonia usually presents as a focal dystonia meaning it affects one part of the body. The dystonia then progresses to generalized dystonia affecting many parts of the body before parkinsonian features eventually appear in the majority of cases. Lubag dystonia is different to Rapid-onset dystonia-parkinsonism commonly known as RDP.

Secondly, RDP is recognized as an autosomal dominant movement disorder or dystonia. This means there is a chromosome identified as 19q13 linking people with this form of dystonia.

These people seem to be affected initially by bradykinesia which is slowness of movement common to Parkinsonism including poor balance. However, there is the additional evidence of involuntary dystonic spasms in limbs, voice (spasmodic dysphonia) and swallow (dysphagia).

RDP symptoms may appear quite suddenly over several hours or sometimes, days. The age range for onset of this type of dystonia seems to be from approximately 15 years to 45 years of age.

If you or someone in your family is affected by any form of dystonia, you need not feel alone. Dystonia Australia lists many support group sites and contacts around the world. Please, take time to look at these by scrolling all the way down the support groups page and follow up by contacting someone close to you. There is a lot of information around if we know where to look for it.

If you would like to say something about dystonia, please leave a comment. Alternatively, you may prefer to contact me at s.j.bayliss@bigpond.com.au. I will get back to you.

Sue Bayliss. Cairns, Australia.

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