Name: Predicting My MS
Uploaded: undefined
Duration: undefined

Nova

Koch Foundation

NOVA Science Trust Logo

In 2005, filmmaker Jason DaSilva was diagnosed with primary progressive multiple sclerosis, a rare type of MS that has no known cure and inflicts a host of progressively debilitating symptoms. In this moving personal film, DaSilva looks back on the challenges he’s faced, delves into the science behind MS, and investigates the potential risk factors that may–or may not–have contributed to his rare diagnosis. Refusing to be labeled as a “tragic” case, he continues to advocate for people with disabilities and to pursue his career as an artist and filmmaker.

A filmmaker with a rare type of multiple sclerosis explores the mysterious causes of MS.

A filmmaker with a rare type of multiple sclerosis explores the mysterious causes of MS.

United States

Northern Mariana Islands

Puerto Rico

American Samoa

Guam

U.S. Virgin Islands

U.S. Minor Outlying Islands

US & Territories

In 2005, filmmaker Jason DaSilva was diagnosed with primary progressive multiple sclerosis, a rare type of MS that has no known cure and inflicts progressively debilitating symptoms. In this moving personal film, DaSilva looks back on the challenges he’s faced, delves into the science behind MS, and investigates the potential risk factors that may–or may not–have contributed to his rare diagnosis.

Predicting My MS

Body & Brain

Predicting My MSPBS Airdate: February 23, 2022 JASON DASILVA: March, 2020.During the height of the pandemic, I felt frozen. I did all of my meetings and doctor’s appointments online. So, what’s it like out in the hospital?JONATHAN HOWARD, M.D. (NYU Langone Health): At the moment, I think Bellevue’s doing okay.JASON DASILVA: Yeah, it was convenient, but it was lonely.Long story short: I spent my days staring out the window, waiting for my daily roll in the park. The never-ending isolation left me with an infinite amount of time for reflection. I began to think about my own particular situation and how I got here. Now, this isn’t a story about the pandemic, it is a story about a mysterious disease and my quest to find out why I got it.In 2005, I was 26 years old, living a full life as an artist and filmmaker, working on several documentary films. I noticed that I was having trouble walking. I went to my doctor to get it checked out. I was diagnosed with Primary Progressive Multiple Sclerosis. Multiple: having several parts; sclerosis: the abnormal hardening of body tissues.In M.S., nerve damage disrupts communication between the brain and the body. A healthy person’s body attacks threatening germs, but the immune system of somebody with M.S. is confused and attacks the protective sheath, known as myelin, of the nerves in the brain and spinal cord. This makes it harder and harder for the brain to tell the body what to do. Multiple sclerosis causes many different symptoms, including vision loss, pain, fatigue and impaired coordination.I have a rare subtype of M.S. called Primary Progressive Multiple Sclerosis. M.S. symptoms like fatigue, muscle spasms, stiffness and weakness, typically come and go, but with P.P.M.S., it’s just a slow and steady decline.The doctors told me in seven years I may be in a wheelchair. There I was in the prime of my life, but my body kept getting worse. I tried everything to stop it: going to the gym, acupuncture, numerous treatments. But I was unable to avoid the inevitable.Depression, confusion, a complete loss of control swirled about me.This past year, seeing the world try to make sense of chaos, the feeling of lack of control about my future returned, in full force. I needed some kind of answers. So, I decided to go backwards to look for possible factors that may have caused me to get P.P.M.S.Let’s start where M.S. was first discovered. Multiple Sclerosis was described as a distinct disease, in 1868, in a series of lectures by French scientist Jean Martin Charcot. This tricky disease evaded treatment, until 1951, when the steroid cortisone was used to treat flare-ups. In 2001, magnetic resonance imaging, known as M.R.I., was included in the McDonald criteria for diagnosing M.S. While MRIs can help detect lesions in areas like the brain and spinal cord, they are only part of a diagnosis.Today, M.S. can be treated with various medications, physical therapies and injections, but there is still no cure.When looking at the probability of getting M.S., on paper, my chances should be slim to none. In the United States, the rate of M.S. is approximately one case per 333 people. Only 15 percent of those are Primary Progressive M.S. That’s one case per 2,222 people. So why me?My investigation led me through a list of potential risk factors. The genetic risk factors of M.S. are complicated. Genome-wide studies have revealed over 200 genetic variants associated with an increased risk of M.S. Some studies have also shown that having close family members with M.S. increases your risk. Did I have a genetic predisposition to M.S.?If nothing else, I can definitely rely on my family to give me some clarity.Leigh do you know of anybody in our family, throughout the generations, that has had M.S.?LEIGH DASILVA (Jason DaSilva’s Brother): Uh, I think it’s just you man, unfortunately.MARIANNE D’SOUZA (Jason DaSilva’s Mother): You’re the first person in our family that, that got it. We did inquire, but we…no, I don’t know of anybody, unless they are relatives we don’t keep in touch with.EDWARD DASILVA (Jason DaSilva’s Father): I’ve asked a lot of people, family members and nobody seems to give me a positive response, so the answer is no.MAUREEN RODRIGUEZ (Jason DaSilva’s Paternal Aunt): Not, not this side. No, we’re the heart disease people and cholesterol, ‘cause we love the cream and the sugar and the alcohol and stuff like that.JONATHAN DASILVA (Jason DaSilva’s Cousin): I mean, I personally don’t know. From my knowledge there’s no one in our family. But my knowledge only really goes up to Mama, Mama and Papa, the grandparents, you know? If you wanted to go further back than that, I think if you ask my mom, if she doesn’t know, she’ll point you to who does know.WANDA DASILVA (Jason DaSilva’s Maternal Aunt): Among Mama’s siblings, I don’t know anyone who has any neurological problems, but going back to her mother, she was born in Russia and got married and left Russia, in, I think, 1920.MARUSHKA SEQUEIRA-PALHA (Jason DaSilva’s Cousin): Mama Lucia was very healthy. I don’t think that even her parents had any, you know, such thing. However, her mother was German Jew. I don’t know if the Jewish side, they had anything or on Grandpapa Victor’s side. But, as far as I know, they were very healthy.JASON DASILVA: Turns out, to my knowledge I don’t have anyone with M.S. in my family. But I did learn that I have Russian and German heritage. Who knew?ANTHONY TRABOULSEE, M.D. (University of British Columbia): By investigating these people where there’s multiple family members with M.S. we might learn about how M.S. works. And that’s been one of the biggest problems with progressive M.S. We don’t know why people progress.JASON DASILVA: Most people experience their first symptoms between ages 20 and 40, but the Primary Progressive subtype that I have often shows up about 10 years later. I was diagnosed when I was only 26.JONATHAN HOWARD: M.S. classically occurs in young adults between the ages of 20 to 40. It can definitely occur younger than that, usually in teenagers. I mean it’s unusual that it occurs in, sort of, true children, you know, under the age of 10, but it can happen. But the vast majority of cases are between the ages of 20 to 40, or so.JASON DASILVA: Hi, Lisa. I got a question. Do you see more women or men with M.S.?LISA LAING, R.N. (N.Y.U. Langone Health): There are definitely more female patients than male. The ratio is two to three times more females. Some research indicates it’s as much as four times as much.JASON DASILVA: This could be related to a number of factors, such as different levels of sex hormones or differences in body fat percentage and distribution, which relate to differences in overall inflammation. However, the reason for this is still unknown. Whatever the reason may be, I’m a male. I was only 25 percent to 50 percent as likely to get M.S. as a female.LISA LAING: Yeah, quite a bit more females. But males tend to, tend to be more, become more disabled.JASON DASILVA: In general, people living beyond the 40-degree mark north or south of the equator, are more likely to develop M.S. than those living nearer the equator. Besides my newfound Russian heritage, my family roots are in Goa, in Southern India. M.S. can strike people of any ancestry, but it’s relatively rare in people of Asian descent.Here’s the kicker: I grew up in South Florida, well under the 40-degree-mark.VERNON: Hey what’s that? I don’t know. I can’t identify it. It looks like a Jason.JASON DASILVA: La-coocoo. La coocoo.Florida was a magical place growing up.DANIEL: Hello, South Florida.JASON DASILVA: I loved the nature and wildlife, playing baseball,…VERNON: Give me some of that mustard.JASON DASILVA: …being around family and adventures with friends.VERNON: I think we’re lost.JASON DASILVA: Yes, let’s go.And that’s where I really started falling in love with the camera.VERNON: And I’m the pitcher.JASON DASILVA: We know. And I’m the video cameraman.And then it all changed.VERNON: Okay, Jason, today is Tuesday?JASON DASILVA: Uh huh.VERNON: July 14?JASON DASILVA: Yes.VERNON: Say goodbye to the plants.Howdy kids!LEIGH DASILVA: How’s it going?VERNON: Are you ready for the 10,000 kilometer trip?JASON DASILVA: My family moved to Vancouver, Canada, when I was 14 years old.MARIANNE D’SOUZA: Tennessee River.JASON DASILVA: T-T-T Tennessee.VERNON: And this is Iowa.Here we are in Sioux Falls.Where we now, Jason?JASON DASILVA: Uh, South Dakota?VERNON: Right. And where are we heading now, after this?JASON DASILVA: Grand Canyon?VERNON: Mount Rushmore!JASON DASILVA: Oh!MARIANNE D’SOUZA: Oh, Canadian flag!JASON DASILVA: Government of Canada customs immigration.VERNON: We’re here.LEIGH DASILVA: This is our house. Not much, ay? Or is it?VERNON: Ta-da!FLOYD WARREN, M.D. (NYU Langone Health): Turns out that moving from areas of low risk to high risk, especially the younger you are when you move, the greater the risk. Some studies have looked at different age cutoffs. So some use 10, some use 15. So, you’re 14, you know, you’re right at that in-between stage. It’s not that you can’t get M.S. in Miami, but it’s certainly much higher in Canada.VERNON: And this is Vancouver, on a very cloudy day. Right, Leigh?LEIGH DASILVA: Yeah.JASON DASILVA: Researchers attribute it to sunlight and the production of Vitamin D.HELEN TREMLETT, PH. D. (University of British Columbia): If your serine vitamin D levels are particularly low, there is suggestion of an association with possible M.S. risk. And in South Florida you, I understand that you would potentially make vitamin D all year round. But in Vancouver, you’re not going to. It will only be in the summer months.VERNON: Hi, Eddie!EDWARD DASILVA: Passionate pink.JASON DASILVA: So far, I’ve got nothing definitive. I’m at the point of desperation, so I call my mom for some support.Mom, I have a question. Would you have moved us to Vancouver if you knew I would’ve got M.S.?MARIANNE D’SOUZA: Oh, that’s a stupid question. Would I really move from Florida to Vancouver, South Florida to Vancouver, with the knowledge that my older son was going to contract M.S. and be severely disabled? If I had known that, I wouldn’t have. Isn’t that a stupid question?JONATHAN HOWARD: Yeah, so, you can’t blame your mom for this one, I don’t think. Where people grow up, it does seem to matter for M.S. And it’s where they spend the first 15 years of their life. So, by the time you reach age 15, that risk factor is firmly established. And this is one of the things that has been known about M.S. for decades. One of the classic findings is that the further you grow up away from the equator, the higher the risk of M.S.JASON DASILVA: At the age of 17, I was a multi- disciplinary artist. That’s actually a portrait of Elvis Costello.INTERVIEWER: Okay, and over here?JASON DASILVA: This one represents, basically, the alien represents imagination. And this represents myself and my day-dreamy attitude towards life and that sort of thing.Along with drawing, painting, and everything else, I was an avid photographer. I spent my school days in the darkroom. Handling and breathing those chemicals all day, in a poorly ventilated darkroom, most likely, did not help.MARC WILKENFELD, M.D. (Chief of Occupational Medicine at NYU Langone Hospital –– Long Island): We know that some of these chemicals, they are toxic to the nerves and to the brain. It has not been shown, but I think the reason that it’s not really been shown is because it hasn’t been well studied.JASON DASILVA: Darkroom solvents weren’t the only kind of chemical exposure that I’ve had. The Twin Towers were attacked just before I arrived in New York City. I joined in the efforts to provide assistance as a disaster relief counselor to the rescue workers and people that lived in the area, right across the street from Ground Zero.Today, research is being done to see if the chemicals and toxicity in the air after the attacks could have a link to different autoimmune disorders. Could this have had a hand in the onset of my M.S.?MARC WILKENFELD: We do know that the workers, including yourself, that were downtown were exposed to a variety of toxins. That could potentially cause autoimmune disease and neurological disease. I, myself, have seen a lot of people with multiple sclerosis, but at this point, from a governmental point of view, they don’t think there’s enough evidence.JASON DASILVA: And I’ve inherited my family’s tradition of being on the move. Like my family, I can’t sit still.I’ve been to so many different countries where travel vaccinations are required. Could that have been a factor as to why I got M.S.?JONATHAN HOWARD: So, vaccines are something that have been pretty conclusively not linked to M.S., and, of course, M.S. existed well before any of these vaccines existed.HELEN TREMLETT: Interestingly, there are some vaccines that may reduce your risk of Multiple Sclerosis. So, no, if anything, those vaccines may have reduced your risk.JASON DASILVA: Well, so much for that.All the variables that I explored are ones that I personally had exposure to. However, on my journey of discovery, I learned of other risk factors.JONATHAN HOWARD: There are a handful of risk factors that we haven’t covered yet. Certain things like head trauma in high school, for example, may be linked to multiple sclerosis.HELEN TREMLETT: Obesity during the childhood years. Now, I’ve seen your first film, and you were not obese. You were a skinny little kid, so we can rule that one off.JONATHAN HOWARD: Cigarette smoking may increase the risk.HELEN TREMLETT: You know, if you ever smoked a lot, and then Epstein-Barr virus. Most of us are exposed to Epstein-Barr virus, and most of us should acquire it in our early childhood. If you’re exposed to Epstein-Barr virus slightly later in life, in your adolescence, you can present with mono, or mononucleosis. So it’s that delayed exposure that may increase your risk of M.S.JASON DASILVA: I never had mono, I didn’t really smoke, and I was never obese. Yet more things to cross off the list.A number of factors can contribute to a risk of M.S. The way I like to think about it is it’s like having an empty bucket, and each of these factors is like a glass of water. Eventually, if you pour enough glasses of water into the bucket, the bucket will overflow.Presumably, this is when your risk of M.S. is greatest.FLOYD WARREN: The feeling is it’s a multifactorial process, probably a combination of environmental, genetic factors.HELEN TREMLETT: They interact with each other, meaning that exposure to something, whether that’s smoking, obesity, the level of sunlight, will probably be relevant in context of your genetic background.LISA LAING: I’m confident that there will be a cure. And, in the interim, they are coming out with better and more efficacious medications. So, that, that gives me a lot of hope.ANTHONY TRABOULSEE: I’ve been working in this field for about, gosh, 20 to 30 years. I lose track. And when I started, we had very minimal treatments for relapsing forms of M.S. and nothing for progressive M.S. And nowadays, the treatments we have for relapsing M.S. are much more effective. And we have something for progressive M.S. that slows it down a little bit. So I am optimistic.JONATHAN HOWARD: I think that patients with M.S. should not feel guilty for a second that they did something wrong, or that they did something to deserve the disease, and if only they’d done something differently, they wouldn’t have gotten sick. Who knows, maybe, maybe we’ll discover one day that there is some behavior that leads to M.S., and we can tell people to avoid it, but we’re certainly not there yet. And that’s a very important message, I think, that people should take home.JASON DASILVA: Being diagnosed with M.S. is oftentimes considered tragic. I always like thinking of my life as seeing the glass half full. When I was told that I have P.P.M.S., and I could be in a wheelchair, I found a way to turn it into something that could help others.By 2008, my ability to walk really began to deteriorate. As I attempted to navigate the world, I discovered many barriers preventing me from doing something as simple as grabbing a coffee or having lunch with friends. So, I created AXS Map, a crowd-sourced, data-driven, digital mapping tool that allows its users to rate and review different venues on their accessibility.ANN NOTARANGELO (Newscaster, CBS5 Eyewitness News, Film Clip): Dozens of volunteers roamed the streets of San Francisco today, to rate the accessibility of businesses for people with disabilities.MAPPER #1: There might be a back entrance, but you would be going through the kitchen.MAPPER #2: Through the kitchen, oh.JASON DASILVA: While nobody’s found a cause or a cure for M.S., its treatment has made great strides. I get two infusions a year, to keep the progression of my disease at bay. When I was diagnosed, I really felt like I lost control of my body.My quest for answers led to no definitive conclusions. I’m left feeling frustrated that there’s no answer as to why I got M.S., yet also hopeful that my journey is not at its end, and one day there will be a fuller understanding about why people get Multiple Sclerosis.But I do know that while we can’t control everything that happens to us, we can lean on each other for support.

NOVA investigates the story of cannabis from the criminalization that has disproportionately harmed communities of color to the latest medical understanding of the plant. What risks does cannabis pose to the developing brain? How much do we know about its potential medical benefits? As cannabis becomes socially accepted, scientists are exploring its long-term health consequences. (Premiered September 29, 2021)Check out a previously recorded panel discussion and audience Q&amp;A featuring experts and producers from "The Cannabis Question" <a href="https://youtu.be/nSTT5RZ_hxA">here</a>.

As state-legalized cannabis spreads, NOVA explores its little-known risks and benefits.

The Cannabis Question

A 2006 composite image from NASA's Hubble Space Telescope and Spitzer Telescope shows the chaos of baby stars in the Orion nebula some 1,500 light-years away. Image Credit: NASA/JPL-Caltech/STScI

With the upcoming launch of the James Webb Space Telescope, the Hubble era is gradually drawing to a close. Here are some highlights from the countless wonders Hubble has shown us during its 31 years in space.

10 spectacular Hubble Space Telescope images

A statue of Zheng He at the Sam Poo Kong Temple in Java, Indonesia. Image Credit: Budianto Santosa, Shutterstock

In the 1400s, Zheng He sailed thousands of miles around Asia and Africa in ships the size of soccer fields, spreading Chinese innovations like compasses and gunpowder in the process.

Predicting My MS

Support Provided By

Explore More

Epstein-Barr infection found to increase risk of multiple sclerosis

New Stem Cell Treatment for MS is a 'Game-Changer'

Augmented

Transcript

Credits

Participants

Support Provided By

Explore More

Epstein-Barr infection found to increase risk of multiple sclerosis

New Stem Cell Treatment for MS is a 'Game-Changer'

Augmented