Getting to know Dystonia

Dystonia is defined as a movement disorder characterized by sustained or intermittent muscle contractions causing abnormal, often repetitive movements, postures, or both. Dystonic movements are typically patterned by twisting and may be tremulous. Dystonia is often initiated or worsened by voluntary action and associated with overflow muscle activation. It is the third most common movement disorder, impacting the lives of 200,000 people in North America alone. Parkinson’s Disease is its closest medical comparison carrying a higher level of public awareness.

Many patients manage their dystonia with the help of doctors, specialists, family and friends, and are able to live a relatively normal lifestyle. Dystonic symptoms do sometimes occur as a side-effect of some degenerative conditions, but dystonia itself does not contribute to a shortened life span.

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There are number of known varieties, named for the parts of the body that exhibit symptoms. Patients usually develop characteristic spasms during or before puberty but have been diagnosed anywhere from childhood to adulthood. Identifying symptoms range greatly but are all manifested in the form of uncontrollable muscular contraction or tension. The variables of spasm severity, cadence, and location differ in almost every case.

Secondary symptoms associated with prolonged or patterned muscle contraction include soreness in the effected areas and general fatigue, both mental and physical. There is no cure for Dystonia, yet. Effective treatment depends on many variables and usually required a multi-faceted approach with medication, physical therapy, and sometimes surgical solutions. It is not a cognitive ailment.

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Dystonia’s known history has taken many turns. Symptoms are seen depicted in ancient art and literature, even in legendary figures such as Alexander the Great. Causation of the disorder, while still not completely clear to this day, has been a contentious subject in the not so distant past. Schools of though have supported both physical and psychological aspects in both the cause and effects of dystonia since its introduction into medical history in the 1500s.

Recent advancements in technology have opened new doors of comfort and hope for those with dystonia. Deep brain stimulation, a surgical option, has come to forefront as a leading option for the suppression of spasms. FDA approved neurotoxin injections have been noted to do the same, although with less permanent effectiveness.

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It is our mission to help add to this timeline by funding both research and educational efforts on dystonia and its complex place in the medical world.