When we talk about Huntington’s, we can’t ignore conversations about race
Just look at the world's largest documented familial cluster in Venezuela
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Huntington’s disease (HD) doesn’t ask about your race before entering your family. It doesn’t examine your ethnicity, cultural background, or socioeconomic status before changing the course of your life. Yet somehow, conversations about who lives with HD have historically centered on certain populations while leaving others feeling like outsiders in their own disease community.
As a Black woman living with HD, I know what it feels like to have my diagnosis questioned because of the color of my skin. During my journey toward diagnosis, I encountered the assumption that Black people don’t get Huntington’s disease. Imagine experiencing neurological symptoms, searching for answers, and being met with disbelief because you don’t fit someone’s preconceived notion of who develops a particular disease.
That experience left me questioning something much larger than my own medical journey: How many people of color have been dismissed, overlooked, or misdiagnosed because their symptoms didn’t align with a physician’s expectations?
One of the most fascinating and overlooked facts about HD is that the world’s largest documented familial cluster is found near Lake Maracaibo in Venezuela. Families in this region have lived with the devastating effects of HD for generations. Their participation in groundbreaking genetic research helped scientists locate the gene responsible for HD, eventually contributing to its identification in 1993.
Think about that for a moment. Some of the most important discoveries in Huntington’s disease research were made possible through the participation of families in Latin America. Yet when we discuss the history of HD, how often do we acknowledge their contributions beyond the scientific discoveries themselves?
These families are more than research participants or genetic data. They are parents, children, grandparents, and entire communities whose lives have been shaped by generations of illness, poverty, and limited access to specialized care. Their stories deserve the same recognition as the scientific breakthroughs their participation helped make possible.
The experiences of these Venezuelan families challenge the perception that HD belongs primarily to people of European ancestry. Although research has documented differences in disease prevalence among ancestral populations, lower reported rates do not mean that people of African, Asian, Indigenous, or Latin American ancestry are immune. In some communities, limited access to neurological specialists and genetic testing can also make the disease more difficult to identify.
But the conversation cannot end with statistics. We must also examine how cultural stigma influences the experiences of people living with HD.
Whose symptoms are recognized?
In some families and communities, neurological and psychiatric symptoms may be misunderstood, feared, or kept private. Involuntary movements may be mistaken for intoxication. Behavioral changes may be interpreted as personal failings. Cognitive difficulties may be dismissed rather than recognized as symptoms requiring medical attention. These misunderstandings can exist across racial and cultural groups, but they may become especially isolating when families already face discrimination or barriers to healthcare.
We also need to recognize that communities of color are not interchangeable. Black Americans, Indigenous families, Asian communities, and Latin American populations have different histories, traditions, resources, and experiences with healthcare systems. Meaningful inclusion requires understanding those differences rather than treating diversity as a single category.
I often wonder how many people remain undiagnosed because they have never encountered a healthcare professional who considered HD a possibility. How many families carry generations of unexplained symptoms without knowing there could be a genetic explanation? How many people avoid seeking help because they fear judgment from their families, communities, or medical providers?
These questions deserve more than occasional acknowledgment during awareness campaigns.
Representation matters in rare disease spaces because it influences whose symptoms are recognized, whose experiences are believed, and whose voices shape research and advocacy. We need culturally responsive education, greater diversity in clinical research, improved access to genetic counseling, and opportunities for people of color to participate in leadership and decision-making.
Most importantly, we need to stop treating inclusion as an invitation extended to communities of color. We have always been part of the HD story.
My advocacy has never been about suggesting that one racial or ethnic group experiences greater suffering than another. Huntington’s is devastating regardless of who you are. My concern is that not everyone receives the same opportunity to be recognized, diagnosed, supported, and heard.
As someone who has experienced both the realities of HD and the consequences of racial assumptions, I believe we must challenge those narratives that continue to leave people feeling invisible.
Huntington’s disease has no racial boundaries. Our compassion, research, representation, and advocacy shouldn’t have them, either. HD has always had color. It’s time our conversations reflected that truth.
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.
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