One of the most common threads I’ve found linking those of us with multiple sclerosis (MS) is that we share the common curiosity of “Why?” What exactly caused us to develop MS? What triggers contributed to our new reality? Did we happen to make choices in our earlier years that set off a domino effect leading up to the diagnosis? Did we do this to ourselves?
I know I’m not alone in asking these questions because I recently watched a short film about a young man’s journey through his diagnosis of MS. The film, “Predicting My MS,” premiered in February on NOVA, which airs on PBS, and it’s available for free online. It shows us the life of Jason DaSilva. He is a passionate, talented artist and filmmaker whose life was turned upside down by his primary progressive MS (PPMS) diagnosis at the young age of 26.
DaSilva was determined to find answers after being told he had PPMS. I believe that those of us with MS share a common thread of resilience. I think of it as a “make it work and get it done” sort of attitude. When watching this movie, I realized that Jason has truly found a way of taking his diagnosis and bringing education, positivity, and motivation to the table.
I applaud him so much, not just for putting his life story out there for the world to see, but also for the way he decided to go about it — incorporating education, science, research, and his own personal goals into the film.
My first takeaway after watching was that this movie would be extremely beneficial to anyone living with MS, or for friends and family who want to know more about MS and offer their support.
In the movie, DaSilva takes viewers through his quest to find answers. This includes reviewing the science behind MS, from its very early years of exploration in 1868 to its initial treatments in 1951, branching out to the use of magnetic resonance imaging (MRI) for diagnosing MS. He shares his knowledge of treatments, risk factors, and statistics. For example, he mentions in the film that only 15 percent of people with MS have PPMS. “That’s one case per 2,222 people,” DaSilva says in the film. “So, why me?”
The film also profiles several of DaSilva’s family members. This is particularly interesting because part of his mission involved digging deeper into his family’s medical history to find answers. As he went down the line, one family member at a time, he seemed to be the only person with neurological disorders. Watching this portion of the film was beautiful to me because it really showed the commitment his family had to his mission of finding answers.
I learned a lot about MS during the movie that was completely new to me. For instance, DaSilva pointed out that people of Asian descent are less likely to develop MS — I had no idea that there were racial disparities involved in the development of this condition.
DaSilva also considered whether any geographical factors may have played a role in his MS diagnosis. Having grown up in South Florida, DaSilva always embraced a love for nature and wildlife, along with quality family time and playing sports with friends. When he was 14, his family moved to Vancouver, Canada — quite a switch from South Florida!
In the film, DaSilva questions whether moving actually contributed to his risk factors. He describes MS risk as being a cup of water that you pour into a bucket. Each risk factor is a glass. But if you take multiple risk factors and continue to pour them into the bucket, then after a while, the bucket will be full, thus giving people an even higher risk of developing MS.
DaSilva also investigated whether he’d been exposed to any harmful chemicals that could have boosted his MS risk. He not only worked in photography, but he also had a job as a disaster and relief counselor after 9/11 and was working directly across the street from ground zero. Research is still being done to see if the chemicals and toxins in the air contributed to different autoimmune disorders, yet there is still no evidence to support a link.
Throughout researching possible risk factors that would lead him to answers, DaSilva seemed to find that it doesn’t take one trigger to contribute to a possible MS risk, but several. “The feeling is it’s a multifactorial process, probably a combination of environmental and genetic factors,” says Dr. Floyd Warren, a neuro-ophthalmologist at NYU Langone Health, says in the movie.
I was moved by the fact that DaSilva has found ways to give back to the MS community, despite his setbacks. If you’ve ever heard of AXS Map, that’s Jason’s creation! It’s an app to rate and review venues based on their accessibility for people with disabilities. It’s pretty genius if you ask me.
Although DaSilva didn’t find the exact reason why he developed PPMS, he discovered during making the film that regardless of his new reality, he will still pursue filmmaking, and he’ll continue to bring awareness to the MS community. Hats off to this warrior for turning something difficult into something empowering and strengthening.
“One day, there will be a fuller understanding about why people get multiple sclerosis,” DaSilva said. “But I do know that while we can’t control everything that happens to us, we can lean on each other for support.”
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MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists’ articles do not reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content is not intended as a substitute for professional medical advice, diagnosis, or treatment.