Bringing my Huntington’s advocacy to Brown University students

When I received the invitation from Brown University’s School of Public Health to discuss my memoir, “We Exist,” I felt deeply honored. As an advocate for Huntington’s disease (HD) awareness, particularly from the perspective of a marginalized community, I knew this was an invaluable opportunity to engage with future medical professionals and public health leaders. I was eager to share my journey not just as a person living with HD, but as someone who has navigated the complex and often unjust realities of the healthcare system.

From the moment I arrived on campus last week, I felt embraced by an atmosphere of curiosity and kindness. The intimate conference room where the discussion took place created a setting that encouraged honest, open dialogue. Students from various majors filled the space, eager to listen and ask questions. I could see the genuine interest in their eyes, not just in understanding HD, but in grasping how biases and systemic barriers affect people like me.

The students’ engagement was remarkable. Their questions were thoughtful, insightful, and, at times, deeply personal. They wanted to know about my early symptoms, my journey to a diagnosis, and the obstacles I’ve faced. More importantly, they wanted to understand the skepticism I encountered — why medical professionals doubted me, why my symptoms were dismissed, and why there is a persistent misconception that Black people don’t get HD.

This was a safe space to be real. I didn’t hold back. I spoke candidly about the pain of being dismissed, the frustration of being misdiagnosed, and the resilience it took to keep advocating for myself. But I also shared my triumphs, including the moment I decided I wasn’t just going to live with HD, but thrive despite it.

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Moments of impact

One of the most fulfilling parts of the event was knowing that I was speaking to some of the brightest minds of the next generation. These students will soon become doctors, researchers, and public health leaders. They are the future of medicine. I wanted them to walk away understanding that one size doesn’t fit all in healthcare. People are people, and care should never be based on race, creed, color, national origin, or lifestyle.

I emphasized how the medical field has long relied on biased frameworks — how statistics and assumptions often overshadow individual patient experiences. A diagnosis should never be dismissed because a patient doesn’t fit into a predefined box. I shared how my story is just one example of why inclusivity and personalized care matter.

During the discussion, the moderator asked me about the misconceptions surrounding HD and what I wish to see changed, especially in the medical community. I expressed my hope that future doctors will look beyond textbooks and statistics and truly listen to their patients. Research is critical, but so is empathy.

I stressed the importance of improving quality of life for those living with HD. I also mentioned the inclusion of all people in research. If marginalized communities are excluded, how can we ever expect treatments to be effective for everyone? Advancements in medicine should benefit all people, not just a select few.

Shaping the next generation

After the discussion, I had the privilege of signing copies of “We Exist” for students and faculty. This moment felt personal. Many students shared their thoughts on how my story had impacted them. Others said they felt empowered to challenge biases in their own future medical careers.

Before I left Brown University, I made sure to leave the students with a challenge: Be the change. I urged them to be the kind of healthcare professionals who break barriers, advocate for the unheard, and ensure that no patient is dismissed because of their background. Change begins with education, but it also requires action. Whether it’s supporting research, pushing for inclusive healthcare policies, or simply listening with an open mind, everyone can play a role in creating a better future for people living with chronic illnesses.

As I reflect on my time at Brown, I feel immense gratitude. Advocacy is never easy. Sharing my story means revisiting painful experiences, but it also allows me to inspire change. If even one student walked away from that discussion with a renewed sense of responsibility to challenge biases in medicine, then my mission was accomplished.

I left the university feeling hopeful that the future of medicine is in the hands of compassionate, thoughtful individuals. These students are the ones who will redefine healthcare, ensuring that stories like mine become rare rather than routine. And for that, I am profoundly grateful.

Together, we can create a world where everyone — regardless of race, background, or diagnosis — receives the care and respect they deserve.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.