Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.

Primary dystonia affects an estimated 300,000 people in the United States and Canada. But that is just the tip of the iceberg when it comes to understanding the true prevalence of all dystonias.

Secondary dystonias that are caused by a number of diseases and traumas are much more prevalent than the primary forms. When we look at the dozens of diseases that can cause dystonia such as Parkinson’s, Huntington’s and Multiple Sclerosis the numbers of dystonia cases can be propelled into the millions.

With this in mind, it is fair to say that a discovery in dystonia research can have a far reaching impact for diseases such as Parkinson’s and Huntington’s and other neurological diseases and disorders.

Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.

Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.

Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that already exists.


WHAT CAUSES DYSTONIA?

Categorizing dystonia by the cause is not a simple task and can easily get complicated because scientists have not yet identified the precise biochemical process in the body that triggers the symptoms. This is often referred to as the “mechanism” of dystonia, and it is suspected that this mechanism is common to all forms of dystonia.

On the other hand, we do know that dystonia can occur as a result of trauma, certain medications, and mutated genes. So, we may say that the mutated DYT1 gene or physical trauma cause dystonia, but these explanations do not address the true origin of the dystonia and what happens inside the body to produce the symptoms.


HOW IS THE BODY AFFECTED?

When dystonia affects only one part of the body, it is called focal dystonia.

Segmental dystonia affects two or more connected body areas (for example the neck, shoulder, and arm). If two or more areas in different parts of the body are affected, the dystonia is termed multifocal (for exam
ple the eyes and vocal cords).

Generalized dystonia refers to dystonia that may affect the limbs, trunk, and other major body areas simultaneously. The term axial dystonia describes dystonia that specifically affects the torso.

When dystonia only affects muscles on one side of the body, it is called hemidystonia.

Certain dystonias are labeled task-specific which means that the symptoms occur only when the person is performing a specific task or movement. These forms often involve the fingers and hands or the mouth.

If symptoms only occur in “episodes” that last for minutes or hours, the terms paroxysmal dystonia and dyskinesias are used.

The word torsion is sometimes used, usually in reference to generalized, axial, or segmental dystonia. Torsion refers to the twisting element of dystonia. It describes muscles contracting against each other.


HOW DO YOU TREAT DYSTONIA?

Although there is presently no cure for dystonia, multiple treatment options are available. Because every person with dystonia is unique, treatment must be highly customized to the need of the individual. No single strategy will be appropriate for every case.

The purpose of treatment for dystonia is to help lessen the symptoms of muscle spasms, pain, and awkward postures. The ultimate goal is to improve the quality of your life and help you function with the fewest side effects possible. In most cases, the most appropriate kind of doctor to treat dystonia is a movement disorder neurologist. Establishing a satisfactory treatment plan requires open communication and patience on the part of both the affected individual and the physician. Make the effort to locate the most experienced physician you can, and someone with whom you feel comfortable.

Treatment of dystonia must be highly customized to each individual. The first step in treating dystonia is to determine as much as possible about the underlying cause. Information about the cause of dystonia may direct the course of treatment. For example, a person with dystonia associated with another neurological disorder will require a slightly different approach that a person with a primary focal dystonia.

The treatment options for dystonia generally consists of several approaches:

In addition to medications and surgery, complementary therapies and supportive therapies should be pursued. Treating dystonia is most successful when the overall treatment plan addresses the whole person: body (physical medicine), emotions (mental health), and spirit (patient support). The treatment plan should address each of these areas.


HOW CAN YOU SUPPORT DYSTONIA?

Donating is one of many ways to support and raise awareness for dystonia.  You can participate in the many fundraising races and walks such as Chuck’s Run for Dystonia which happens annually in June and the annual Dystonia Zoo Walk at the Toronto Zoo which happens annually in September.  There are also many smaller events to participate in or lend a helping hand as a volunteer.  Click here to see a list of events.

For information on dystonia visit the Dystonia Medical Research Foundation of Canada or feel free to contact me at swim@lapsoflove.ca


I hope that this post sheds some light on what dystonia is and is helpful to those who are potentially suffering or know of someone who is suffering.

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