Dystonia Awareness Month - PMD Alliance

An estimated 250,000 people in the United States have dystonia, a chronic movement disorder affecting the brain and nervous system. It is the third most common movement disorder after essential tremor and Parkinson disease. Dystonia causes excessive, uncontrollable muscle spasms. The muscle spasms twist the body and limbs into involuntary movements and awkward postures. Estimates suggest that 70% of patients are misdiagnosed prior to a dystonia diagnosis. “Individuals often suffer years without proper treatment, and this can have devastating effects on employment, schooling, and overall quality of life,” says Art Kessler of Chicago, Illinois, President of the Dystonia Medical Research Foundation (DMRF). “Delayed diagnosis also prevents people from having access to the information they need to make informed treatment decisions and peer support from others who understand the challenges of living with dystonia.”

Mr. Kessler began experiencing symptoms of dystonia around age eight. “When I started having symptoms, my foot would turn in, and then the symptoms spread to the rest of my body. My arms became stiff and twisted uncontrollably,” he explained. “As I got older, my back started to arch when I walked, and my head would be pulled over.” In 2007, Mr. Kessler had deep brain stimulation (DBS), a neurosurgical procedure that uses an implanted medical device to treat movement disorders including dystonia, essential tremor, and Parkinson disease. His symptoms are 80-90% reduced.

Dystonia can affect many muscles all over the body or target a specific body area. Common symptoms include abnormal head and neck movements, excessive blinking, a breathy or strangled-sounding voice, hand cramps, and/or a twisted foot. Dystonia occurs when the nervous system is overcome by chaotic signals, causing muscles to contract involuntarily. Causes include genetics, traumatic brain injury, drug reaction, and numerous neurological or metabolic diseases. In many cases, there is no apparent cause.

Dystonia affects adults and children of all ages. Because dystonia may alter the subtle cues of natural body language, symptoms are sometimes mistaken in social situations for behavioral disturbance, substance abuse, or bad manners. Treatment options are available including oral medications, botulinum neurotoxin injections, deep brain stimulation (DBS), and supportive therapies depending on the needs of the individual. Prompt diagnosis is critical because research suggests that treatment may be more successful when symptoms are treated early.

Throughout September, the DMRF is mobilizing volunteers across the country to promote dystonia awareness by participating in Virtual Dystonia Zoo Day on September 25, 2021. The DMRF is a non-profit organization that supports dystonia research, promotes greater awareness, and provides support resources to affected individuals and families. For information about dystonia, treatments, support resources, and locating medical specialists, visit the DMRF website or contact them at 800-377-DYST (3978).

Common Signs of Dystonia

  • A body part is flexed or twisted into an abnormal position.
  • Repetitive and patterned body movements, which may resemble tremor.
  • Dystonic symptoms may worsen or occur only with specific tasks. For example, hand dystonia may be present only when writing or playing a musical instrument.
  • Attempting a movement task on one side of the body my activate dystonia symptoms on the opposite side.
  • Dystonic movements and postures may be temporarily relieved by a gentle touch or specific action called a ‘sensory trick.’

Common Misdiagnoses

Dystonia symptoms should not be confused with:

  • Orthopedic conditions (e.g., scoliosis and congenital torticollis)
  • Muscle cramps
  • Muscle contractures
  • Essential tremor
  • Tics
Download a Dystonia Fact Sheet

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