Casey Kidson: Dyfying Dystonia

Dyfying Dystonia Logo

Meet Casey Kidson, a dystonia warrior. Casey’s Goal is to Raise Awareness Find a Cure for Dystonia

Casey Kidson was diagnosed with dystonia in 2003. Since that time, she has been dedicated to not letting Dystonia win. In an effort to raise more awareness of the disorder, and more funds for the cure, Casey has donated her entire 2017 running season, comprised of over 15 runs so far, this year, to Dyfying Dystonia. 

The DMRF Canada has set up a fundraising page so if you'd like to help Casey on her journey, you can do so by donating here. 

DMRF Canada sat down with Casey to learn more about her dystonia, and her Dyfying Dystonia campaign:

DMRF Canada:  When were you diagnosed with dystonia, and what type of dystonia do you have?
CK: I was diagnosed with Dystonia in 2003 at the age of 15. The form of dystonia that I have is Myoclonus Dystonia.

DMRF Canada:  How long did it take to get your diagnosis?
CK: Very subtle symptoms began around the age of 3 after a high fever. The symptoms continued to slowly progress until around age 15, I was referred to a neurologist in 2002 when I was 14 years old. After numerous tests including MRI's, EEG's and consultations with various other neurologists it was confirmed that I had Myoclonus Dystonia.

DMRF Canada:  How did you feel when you were first diagnosed?
CK: My diagnosis came following a large conference like meeting with approximately 10 specialists and neurologists, during which I was asked various questions and required to performed certain activities such as writing, walking, and exercises that challenged my balance and fine and gross motor abilities. Receiving the diagnosis was rather challenging. Questions buzzed through my mind "Is there a cure?", "Will it get worse?", "What will I tell people?", "Will it stop me from engaging in certain activities?" - so many questions that I didn't know the answers to. Although, as challenging as it was to receive the diagnosis, it also came as a relief to finally have an answer to why I had been experiencing all the involuntary muscle twitching and contractions for so many years.

DMRF Canada:  What made you decide to set up your Dyfying Dystonia campaign?
CK: "Purpose is the reason you journey. Passion is the fire that lights the way"

When I reflect back to a year and a half ago when I first laced up my running shoes for the Limestone Mile, a 1 mile Canada Day race here in Kingston, Ontario, I would have never imagined that road twisting and turning to bring me to where I am today.   My goal was simple, to finish that race, in my mind it was just a straight road with a start line and a finish line. However, I was very wrong about the straight road, as my journey continued and my passion for running grew to new heights, I knew that I no longer wanted to just run to finish the race, or train to just train. I wanted to run, train, and race for a purpose, a purpose that not only impacted myself but everyone else around me. That was the moment I decided I was going to allow my passion for running light the way on my journey to spread awareness and support for Dystonia Medical Research Foundation Canada. I came up with the campaign title 'Dyfying Dystonia' from Idina Menzel's song Defying Gravity, the lyrics really hit home for me:    

" I'm through accepting limits 'cause someone says they're so. Some things I cannot change but 'til I try, I'll never know!" - Idina Menzel.

Embracing and accepting my capabilities and challenges to push through barriers to discover how far I can actually go, because until I try I will never know.

DMRF Canada:  What do you hope to achieve with this campaign?
CK: With my Dyfying Dystonia campaign I hope to spread awareness and raise support everywhere I go.  My goal is to raise funds to support dystonia awareness and education initiatives and spread awareness for DMRF Canada with their goals of advancing research in hopes of finding a cure. Lastly, I hope that my campaign will bring the dystonia community closer together. We are in this journey together, we are strong and together we can 'Dyfy Dystonia'.

DMRF Canada:  How can others in the dystonia community get involved and help to support you in your effort to raise awareness of dystonia?
CK: The dystonia community can get involved and assist in supporting my efforts to raise awareness for dystonia by following my Facebook page and my tumblr page here

By sharing my pages and posts it will play a very helpful role in spreading awareness. You can also join me at any of my upcoming races, I would love to meet you and I think it would be amazing to have support from members of the dystonia community at the various races.

Thank you for your support! 

Last update: Nov 2018