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September is Dystonia Awareness Month

September 02, 2015

September is Dystonia Awareness Month

I was checking out the latest on Facebook one day when I found a post from a dear friend of mine about a Cleveland Zoo Walk for Dystonia.  I honestly did not know too much about the disorder so I did a little research.  I was shocked and saddened to find out the horrific details of this neurological disorder.   Just in North America Dystonia affects more than 500,000 children and adults.  The onset is most commonly in early childhood.  Dystonia is the third most common movement disorder and a symptom of Parkinson’s disease.  As we all know the Michael J. Fox Foundation (MJFF) has been dedicated to finding a cure for Parkinson's disease.

Last year (2014) The MJFF established a collaborative research alliance with The Bachmann-Strauss Dystonia and Parkinson Foundation to boost visibility for Dystonia and Parkinson’s. Please visit his site for more information.  

Unfortnately, at this time there is no cure for this painful condition that causes involuntary muscle spasms and contractions.  Right now people with dystonia are bringing more awareness to this neurological disorder so they can help future patients avoid a lengthy journey to diagnosis.

Dystonia is a common symptom for people with Parkinson’s who have a mutation in the Parkin gene.  It is estimated that 40% of people living with Parkinson’s has some form of Dystonia.  Both are movement disorders.

There are two types of Dystonia.  One is Primary which is mostly genetic and Secondary that may be a result of a head trauma, drug use or exposure to rare toxins but for the majority of the cases it is still not known what cause this debilitating condition.

Dystonia can affect one muscle, a group of muscles or muscles though out the body.  Some symptoms of Dystonia may include involuntary muscle contractions that cause slow repetitive movements or abnormal postures.  It can affect the eyes with uncontrolled blinking in one or both eyes.  Tremors or difficultly in speech are also common occurrences.  

Its like the neurotransmitters in the brain are not in sync and the cells can not communicate with the brain.  There may also be a problem with the way the brain processes information and generates commands to move.

A lot of the treatments for Dystonia are shared with Parkinson’s.  They may use medications, surgical treatments, physical therapy to help relax muscles.  Many patients also have said that Yoga, Tai Chi, and Meditation have been beneficial, though there is no medical evidence yet to support this.

Thank you for reading this Blog on Dystonia.  Please be reminded that this is my perspective on this disorder.  I have gathered this information from my own research on this subject.  If this post has moved you to learn more about Dystonia, please find more information, and a list of groups exclusively focused on dystonia (including pediatric dystonia) at Dystonias Information Page .  Information from the National Institute of Neurological Disorders and Stroke (part of the National Institutes of Health).

Some great sites to check out!

Dystonia Medical Research Foundation

DystoniaFoundation.org

JulesObsession.com ~ For this featured Awareness Bracelet and Many, Many Others!

Until Next Time!

Julie

JulesObsession.com




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