Part of advocacy is challenging assumptions about Huntington’s

One of the hardest parts of living with Huntington’s disease is when other people don’t believe me when I discuss my health.

I’ve spent years being challenged by medical professionals, questioned by strangers, and even pushed out of organizational spaces that were supposed to support people like me. It wasn’t because I don’t have Huntington’s disease or because I’m not symptomatic. It was because I don’t fit the narrative that many people have regarding this disease.

I am a Black woman with Huntington’s. For some people, that still runs contrary to their preconceived notions about who gets this disease and what they think it should look like. That bias has followed me from exam rooms to advocacy spaces to invitations that were extended and then quietly pulled back. I’ve felt what it’s like to be welcomed when my story sounds inspiring on paper, only to sense discomfort when my presence asks people to confront the truth: Huntington’s disease doesn’t belong to a single race, type of family, or polished version of advocacy.

Recommended Reading

March 5, 2026 Columns by Tanita Allen

I insist on being seen as I am, not as someone else’s story

We deserve to be listened to

There’s a difference between being included and being convenient.

Too often, the public narrative about Huntington’s disease is shaped by people who are gene-positive but asymptomatic, by relatives reflecting on loved ones, or by professionals and advocates who do not live in a symptomatic body themselves. I’m not saying those voices have no value. Family members carry grief, fear, and wisdom. Gene-positive people live with uncertainty that is real and heavy. Clinicians and researchers play an essential role. But none of those perspectives should replace the voices of people who are actively living with symptoms right now.

I think that replacement happens more than people want to admit.

When people center voices that are distant from symptomatic experiences, the disease becomes easier for the public to misunderstand. It becomes a theory instead of a reality. It becomes a tragic image from the past instead of a present-day, lived condition shaped by science, medication, support systems, and the resilience of people who are still here building lives in the middle of it.

If the Huntington’s community is serious about education, advocacy, and progress, then the people speaking publicly about this disease should include those who know it from the inside out — not only from family memory, genetic possibility, or professional distance, but also from the inside.

This matters even more because Huntington’s disease has never belonged to only one ethnicity. The Lake Maracaibo region of Venezuela has long been recognized as home to one of the world’s largest and most studied Huntington’s disease clusters. That fact alone should challenge the assumption that Huntington’s is somehow disconnected from people of color. And yet many people still move through this world as if a Black woman with Huntington’s disease is an exception so unusual that she must first prove herself before she is believed.

I certainly know what that feels like. It feels like having your diagnosis questioned. It feels like being looked at with suspicion instead of being offered care. It feels like being invited to speak, only to realize that your truth is only welcome as long as it doesn’t disrupt someone else’s preferred version of the story.

But my life is not a disruption. It is part of the truth.

The truth is that people with symptoms deserve to be seen, heard, and taken seriously. Lived experience matters. Medical professionals should be giving the most up-to-date information available. And advocacy organizations should be brave enough to put symptomatic people at the center of conversations about this disease, not at the edge or as an afterthought. Who better to speak about Huntington’s disease than those of us waking up and living with it every day?

If the goal is awareness, then let the awareness be real. If the goal is education, then let the education be current. If the goal is representation, then let it include the people who don’t fit the old narrative.

I don’t need to fit someone else’s image of Huntington’s disease to belong in this conversation. I and others like me belong here.

If the Huntington’s disease community wants a fuller, more honest future, then it must make room for voices that have too often been doubted, filtered, or pushed aside — not because our stories are trendy or because diversity looks good on a brochure. But because truth matters.

And the truth is this: People living with symptoms are not the wrong messengers. We are the message.

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.