Get-hooked September 13, 2020
Mumbai’s Huafrid Bilimoria & Canada’s Casey Kidson to mark Dystonia Awareness Month with unique run
September is Dystonia Awareness Month and to create awareness about this condition, two people with dystonia, one Indian and the other Canadian, have taken up quite a challenge. Read on to know more.
Dystonia is a movement disorder where muscles in the body contract involuntarily. This leads to repetitive, twisting movements. The muscle spasms range from mild to severe and can be painful. This affects the ability to do day to day tasks.
Living with dystonia is challenging and lack of awareness makes things worse for people with the condition. Huafrid Bilimoria and Casey Kidson have experienced this first-hand.
Casey has myoclonus dystonia, a condition that was diagnosed when she was 15 years old. “I was three years old when the symptoms started and not knowing what was causing jerks and twitches and spasming in my neck was very challenging”, says Casey. She is the founder of Dyfying Dystonia and a well-known dystonia advocate and change maker.
Huafrid has cervical dystonia, a condition that was diagnosed when he was 16. Like Casey, his early years were full of challenges. Today the 24-year-old feels he has turned a corner and is making a name in the field of social work and sports. Huafrid has the distinction of being the first Indian with dystonia to complete a 10-km swimming event.
The two met on social media and connected over these experiences. This led them to start thinking of ideas to promote awareness. Another thing Huafrid and Casey have in common is a passion for exercise. This has helped them both overcome some of the challenges of dystonia.
“I came across Casey’s profile on a dystonia awareness group”, says Huafrid, who lives in Mumbai. “We both wanted to do something that no individual with dystonia has done”.
What they thought up, says Huafrid, is ‘impossible’, something that a person even without a condition like dystonia would attempt. Through the 30 days of September, a month marked worldwide as Dystonia Awareness Month, Casey and Huafrid are planning to run 10-km every day.
There’s a whole new adventure this month and this will be a very challenging month. There are many people without dystonia who would find what we taken up challenging. We are doing this together to raise awareness. – Casey Kidson, Dystonia advocate
Huafrid and Casey started training for the challenge a month ago. They have included strength training along with their daily running practice. This also includes core exercises which is critical for distance running.
Raising funds for dystonia awareness
“The final goal is for each of us to finish a staggering 300-km in a month, and that’s why we called it Dystonia 600”, says Huafrid. “We are keeping our fingers crossed that we do this”.
Apart from awareness, Huafrid and Casey are also running to raise funds for Dystonia Medical Research Foundation (DMRF) Canada. DMRF was founded in 1976 by Samuel and Frances Belzberg of Vancouver, after their daughter was diagnosed with generalised dystonia. DMRF works to advance research for more treatments and ultimately a cure, to promote awareness and education, and to support the needs and well-being of affected people and families.
“We want to draw attention to people with dystonia in wheelchairs, those more affected by the condition than we are”, adds Huafrid. “There are people who cannot go out there or hold jobs We are so blessed that it is not so debilitating for us and that’s why it is important that we do this”.
Cheer for Huafrid and Casey. You can follow them on Instagram here.