The dystonia community is filled with leaders and champions, one of them being Sumbul. Sumbul is mother to two wonderful and philanthropic daughters, a business owner, a competitive swimmer and someone living with dystonia. Sumbul recently got in touch with the DMRF Canada about wanting to get more involved and raise more awareness and funds for dystonia. As a competitive swimmer Sumbul has started formulating plans to develop a Swim-a-thon in 2018 called Laps of Love. Read below to learn more about Sumbul. You can donate to Laps of Love here.
How long did it take you to get your diagnosis?
In the fall of 2013 I suffered a silent stroke, which left me with residual symptoms that affected my daily life. The doctors and specialists could not find a logical reason why someone with my health and age would suffer such a thing. I overcame many of the challenges from a stroke however, not all of me was healing. I began to have difficulty speaking, and swallowing and my neck would twist involuntarily, my face would twitch and pull at random, and I was in immense pain.
After a year of seeing countless specialists, in the spring of 2014 I was diagnosed with hemi-facial spams and in the fall of 2014 I was diagnosed cervical dystonia.
What was your first thought after you were diagnosed?
Initially I was devastated, scared and confused. I had never heard of either forms of dystonia before. Being an athlete, I never expected that I would be diagnosed with any illness, let alone one that was neuromuscular and slowly progressive. I was 33 at the time of my diagnoses, I was swimming competitively and an active mom with 2 young children (at the time they were 4 and 2), I was afraid that dystonia would prevent me from raising them with the full quality of life that I dreamt of.
What has made you decide to launch the Laps of Love Campaign to support DMRF Canada and dystonia awareness?
There’s just not enough awareness or information out there. I have come across so many people who look at me or see my head tilted or face pulling and think I’m trying to be funny and when I explain to them that I have dystonia, they have no idea what it is.
My daughters were the main inspiration to my campaign, Laps of Love. They would come to my swim practices and swim meets and cheer so loudly and scream “go mommy go, we love you!” When I am struggling with practices or I am having trouble because of my symptoms, they stand at the end of the deck saying “, you can do it mommy, we love you!” or “take a break mommy”
One day after my swim, I sat on the deck dangling my feet in the water looking at the starting blocks feeling defeated. I remember thinking that there had to be some way raising awareness and connecting with the community. That’s when I started to journal my ideas about a swim-a-thon for Dystonia. I reached out to DMRF Canada and shared my thoughts about dedicating my masters swim seasons as part of the Laps of Love and my hopes of organizing a swim-a-thon. They were so supportive and enthusiastic. When I found out that Chuck’s first event was a swim-a-thon many years ago, I was thrilled. What a full circle, and I certainly feel honoured to bring it back.
DMRF Canada has supported me along with so many others who have been impacted by Dystonia. I believe that strength comes in numbers. The more people who know about dystonia, the more it will strengthen the dystonia community and the support for on going research.
To learn more about Sumbul and read blog posts by her click here.
To donate and help Laps of Love come to fruition please click here.