The first Hispanic/Latinx MS Experience Summit: Encouraging our community to live their best lives

I was barely a teenager, but there I’d be at the doctor’s office to interpret when my mom switched from English to Spanish in the middle of a sentence, explain what her made-up words meant and push her to take the medication the physician prescribed, instead of garlic, her go-to remedy.

My parents, the children of Mexican immigrants, grew up San Antonio, Texas, and speak some English, but Spanish is their main language. At home, they tried to speak English to my two siblings and me, so we’d do well in school, but slipped into their mother tongue when they got upset. My grandmother, on the other hand, scolded me about my imperfect Spanish. And during our regular gatherings with dozens of relatives, we went back and forth between the two.

So, armed with those language skills, I helped my mom, Anita, navigate routine medical appointments when my dad was hard at work at the post office. It wasn’t until years later that I realized that without someone filling in the gaps, my mother would have missed crucial medical information. And in a way, my role as her improvised interpreter led me down a career path in which I help others, including members of the Hispanic/Latinx community, make their way in the world of health.

The National Multiple Sclerosis Society’s first Hispanic/Latinx MS Experience Summit on September 15 will be a bright moment in its efforts — and mine — to open doors for a group that has often been left behind.

A fulfilling path

I stumbled upon the Society in 2001, when I returned home after a psychology degree and case management work in Texas and Florida. Following a friend’s suggestion, I started out as a volunteer, putting packets together for a bike ride. Within two weeks, I was answering the phone as an information and referral specialist.I’d found my life’s passion.

I knew little about multiple sclerosis or MS as it’s commonly called, a disease of the central nervous system that disrupts the flow of information between the brain and body. Nearly 1 million people in the United States live with it. We used to think that it primarily affected people of Northern European descent. But soon after I joined the Society 21 years ago, I started meeting Hispanics/Latinx with the disease in my work throughout Texas. “Are there others?” they’d ask me. There were, but before the widespread use of email and social media, making those connections was difficult.

That is why the Society’s Summit is particularly important to me. We now know that the presence of the disease among people of color is greater than we thought and that, among Hispanics/Latinx, it’s on the rise. It also tends to present itself earlier, be more severe and lead to more disability.
I’ve witnessed the frustration and anxiety a Multiple Sclerosis diagnosis can bring to someone's life, along with the challenges of receiving quality healthcare to manage the disease and symptoms that can include fatigue, difficulty walking, fogginess and vision problems. I’ve seen that for people faced with a language barrier, these emotions and challenges can be even more difficult.

I hope that those who join us online that day from — whether they’re people with the disease, their relatives or caregivers — will walk away with information from experts that will help them make important decisions about the disease and learn that early treatment is crucial to slow it down. I hope the Society will show them that it can help them improve their lives and connect them to valuable services and resources in English and Spanish. I hope attendees will consider joining clinical trials, which badly need Hispanic/Latinx participants to better understand how MS affects us. I hope we at the Society will hear more from the MS Hispanic/Latinx community and learn how we can better serve them.

Most importantly, I hope that if you decide to participate, you will leave the Summit knowing that, as I used to tell people back in my early days at the Society, “You're not alone.”

To register and for more information, visit nationalMSsociety.org. To comment on social media, use #LatinxMSExperience.