Down with Dystonia - Seeking Better Dystonia Treatment and Awareness

Dystonia may not be a disorder you're currently familiar with, but in North America alone, over an estimated 300,000 people suffer from it daily. So, what is it and what is being done to research and treat dystonia or cure it? Down with Dystonia, a Los Angeles-based nonprofit organization, is one group asking such questions and working towards a solution.


Before we get into the work Down with Dystonia has in their sights, let's first give a basic overview of dystonia. Keep reading to learn more about this neurological movement disorder.


photos by Jamal Eid - @jamal.eid


Down with Dystonia Feature


-ABOUT DYSTONIA-

As mentioned above, dystonia affects over 300,000 individuals throughout North America and of all the movement disorders, is actually the third most common. But what is dystonia and how does it manifest in individuals who have the disorder?


Dystonia is a neurological disorder which causes involuntary muscle contractions and tension, similar to Parkinson's Disease. It is thought that dystonia may have to do with problems in the basal ganglia, the brain region which initiates the contraction of muscles. It may be genetic or it may be acquired at some other point in life from some unknown event. There is still a lot of mystery around dystonia. Whatever the cause, dystonia is a disorder which can emerge without warning at any age, from infancy to adulthood.


Dystonia has a long history of being misdiagnosed, so one of the challenges the medical community currently faces is finding better ways to diagnose and treat dystonia early. Dystonia is characterized by uncontrollable muscle contractions. The severity, location and duration of these spasms differ widely from case to case. One person with dystonia may experience debilitating spasms in their face while another may have only occasional, milder symptoms occur in their back.



Even though there is currently not a cure for dystonia, many people who have it manage to lead relatively normal lives. Dystonia treatments and therapies are available, including deep brain stimulation and botulinum toxin injections, however they are only temporary solutions. Dystonic symptoms may return at some point following such therapies.


Now that we understand the basics of this disorder, let's take a look at the nonprofit organization Down with Dystonia and their founder Devin McClernan, a person living with dystonia himself.


-ABOUT DOWN WITH DYSTONIA-

Down with Dystonia was founded by Devin McClernan in 2015. As a child, Devin was highly active and loved playing baseball. Things started to change after an orthodontics appointment for a routine visit. First, he began to lose his ability to speak clearly. Then, his symptoms worsened. He began to experience spasms in his neck, jaw and back, which resulted in abnormal postures and the contortion of his body. While nothing seemed to help at first, Devin maintained a positive outlook.


Twenty plus years and countless medical treatments later, Devin has found therapies that work to lessen his symptoms, mainly Deep Brain Stimulation, and is always eager to hear about new treatments for dystonia. Devin's symptoms of dystonia today still manifest themselves in his neck, jaw and back, causing near-constant muscle spasms and making it difficult for Devin to speak. However, with the help of his Deep Brain Stimulation implant, Devin is able to live an independent, healthy and productive lifestyle. 



So productive in fact, that he recently started the nonprofit organization Down with Dystonia. Down with Dystonia currently has five clear points of focus:


  1. Stories - Through written and visual content, Down with Dystonia will help others share their journey in an effort to grow awareness for the disorder.
  2. Digital Content - Meant to help individuals living with dystonia and to grow awareness, Down with Dystonia will spearhead the creation of content ranging from social posts to informational videos.
  3. Training and Presentations - Down with Dystonia will help educate first-responders and the medical community about the disorder.
  4. Encourage and Support - Connecting individuals living with dystonia with one another is a major goal of Down with Dystonia.
  5. Advocacy - Finally, Down with Dystonia will leverage relationships among the dystonia community, other organizations and the medical community at large to develop better treatment options and ultimately, a cure. Additionally, Down with Dystonia strives to assist the adding of dystonia to the list of qualified disabilities by the federal government.


In December of 2019, Down with Dystonia held their 2nd Annual FunDrive in El Segundo, California. The event was held at the Automobile Driving Museum and featured plenty of entertainment, classic cars and presentations from keynote speakers.


photos by Jamal Eid - @jamal.eid


The event was an opportunity for guests to learn more about dystonia and Down with Dystonia, and to interact with Devin and his support team. If you're interested in attending the next Down with Dystonia FunDrive, you can join the Down with Dystonia mailing list at the bottom of their homepage. You can also get involved directly with their efforts and remember, DWD is a non-profit charitable organization. Their ability to accomplish this mission depends on donations and volunteers.


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