Editor’s note: In the interest of promoting diversity, equity and inclusion, the Foundation is sharing stories of the Parkinson’s journey specific to people of color. While all members of our community are welcome to contribute, this series centers the experiences of those navigating Parkinson’s in the context of racial bias.

When I think about the actions I can take to counter diversity and bias in medical research and health care, I am aided by holding the perspectives of both a woman and an immigrant. It’s on all of us in the field to represent the population at large. And we have to work hard to break down barriers that stand in the way of every person benefiting fully from advances in research and care.

I’ve often entered research meetings as the only woman of color — I find it critical to no longer accept this as the norm. I think a lot about the lack of data in women of color. In my own leadership position, I find myself reinforcing the need to prioritize the study of data applicable to women as well as to men. Women have different biology and lifestyle factors that impact the manifestation and experience of disease, but research into these topics is rare. Unfortunately, this is one more example of a well-documented historic inequity — women’s health is misunderstood or is diminished both in terms of scientific inquiry and financial support.

As someone with Indian heritage, I also am struck by how little our field has thought about Parkinson’s disease outside of the West. In India alone, that’s a billion plus individuals who should be factored into disease research. This is not only an obvious disadvantage to those people, but also is holding back the research itself. The more data we have, and the more widely diverse populations we systematically study, the greater our understanding of human disease. And that means faster knowledge turns toward major breakthroughs.

There is something Michael often says, wryly: “Biology is hard.” The pursuit of improved treatments for disease is an extraordinarily challenging one. We have the greatest chance of success if research welcomes, encourages and enables the participation of all people. The good news: Society and the field as a whole have begun to recognize these inequities. I’m optimistic that we’re moving in the right direction. We all have a role to play and for the first time, I think there’s a growing level of commitment spanning across generations and communities.

Sohini Chowdhury is Deputy CEO, Head of Research, at MJFF.

I’m a fellowship-trained movement disorder specialist. So when I received my Parkinson’s disease (PD) diagnosis, not only was it unusual, it was eye-opening. I got a first-hand glimpse at the barriers and disparities women — and especially women of color — go through in the health care system. I had to fight hard for my voice to be heard in a male-dominated field. It was troubling having to advocate for myself and the symptoms I was feeling when talking to various physicians. I would hear the same thing repeatedly from doctors, “You’re Hispanic; you’re a woman; you’re in your 30s. Why would you have Parkinson’s?” And I would answer, “I’m a Parkinson’s specialist; I think I would know.”

This personal PD journey led me to a passion for advocating and empowering communities of color — especially the Hispanic community — to fight for their diagnosis and be included in critical research. Trained physicians must understand that Parkinson’s can affect all races and genders. As a Mexican American, I understand that the Hispanic community often faces language barriers. It’s important that physicians not only translate materials, but understand the experiences, cultures and belief systems to empower patient dialogue. My favorite Van Gogh quote, “To understand blue you must first understand yellow and orange,” holds true to the idea that by looking into diversity and differences we can better understand the disease itself.

María L. De León, MD, is a movement disorder specialist, avid research advocate and MJFF Patient Council member. Listen to the Foundation’s recent Parkinson’s Podcast episode on inclusivity in Parkinson’s research to hear more of María’s story.

I was diagnosed with young-onset Parkinson’s disease (YOPD)) at 27, but my symptoms started as early as 17. It took a decade to get the right diagnosis even after experiencing classic PD symptoms such as stiffness, fainting, difficulty moving and trouble speaking.

According to PD literature, minorities face several challenges to get diagnosed correctly. It’s a sad and a truthful reality. The neurologists I consulted thought I was a drug addict. They didn’t examine me, order tests or even listen to me. I felt powerless and stigmatized, abandoned by the healthcare system.  I did not receive the medical care that I desperately needed. I resent that I had a double battle to fight — discrimination and Parkinson’s disease.

I was determined to remain resilient in my search for a diagnosis. In 2011, I was referred to the Montreal Neurological Institute where I was officially diagnosed. Since then, I have received the best Parkinson’s medical care from a multidisciplinary team. I see my movement disorder specialist every six months. I am highly satisfied and treated with dignity.

I want people, especially clinicians, to know that Parkinson’s can impact anyone, regardless of age, race or ethnicity. I am using my voice to help raise awareness and break down myths and stereotypes grounded in racism. I created a Facebook group dedicated to connecting members of the Parkinson’s community of all ages and races — I now have more than 12,800 + members worldwide. This group gives me a sense of purpose. It’s very active and informative. I am grateful to make a difference in the lives of people living with Parkinson’s.

Manon Day is a Parkinson’s advocate based in Montreal, Canada, and creator of the Facebook group “Everything about Parkinson’s Disease.”

I joined the Foundation four years ago because I saw it as an innovative research organization, not because I had a personal connection to the disease. Or at least, I thought I didn’t. I am Dominican and Pakistani, and I didn’t even know my great-aunt had Parkinson’s until years later. This speaks volumes about the stigma and lack of awareness around PD in communities of color. “Parkinson’s” didn’t enter my vocabulary as a child, even as I saw the tremor in my own aunt. She has passed now, and to this day, I don’t know if she got the best care or the right treatment for her disease. 

My work at MJFF is focused on understanding barriers for communities of color to participate in research. But it strikes me that even before a patient can raise their hand to join a trial, they first need a diagnosis. While speeding research is our ultimate goal, we as a scientific community can’t leave out the other critical need for disease education that must be addressed at the same time.

Bernadette Siddiqi is Associate Director of Research Partnerships at MJFF. 

It is difficult for me to understand how society can take one word, a label, and think it conveys the depths of a person’s experiences. When I moved to the United States, I knew I was labeled as black, a woman and also an immigrant. I worried that these labels would limit me in my personal life, and my career. And it has struck me that there is a whole community of people with Parkinson’s who are labeled, too.

One of my first MJFF assignments was drafting a social post to promote a story about a young black woman who struggled to receive her PD diagnosis — medical professionals assumed her symptoms were because of drug use or because she had AIDS. It broke my heart. I couldn’t imagine being in her shoes. No one believed her experience because she was a black woman. It was inconceivable to me.

I manage our social media and I see people of color who engage with our content but are often not the most vocal. As I reflect on issues of systemic racism, I wonder if the labels that people feel they carry prohibit them from speaking up. And I ask myself how I can use my role at the Foundation to help break down the negative associations with these labels. I’m committed more than ever to using my role to help shed light on the issues that people of color living with Parkinson’s face.

Kimberley Marumahoko is Marketing Officer of Audience Development and Engagement at MJFF.