HD in Color — Tanita Allen

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Tanita Allen, from Cleveland, Ohio, was diagnosed with Huntington’s disease in 2012. As the first in her family with the gene, she has pursued her education while managing symptoms. She holds a diploma in paralegal studies, an associate’s in science, and a bachelor’s in public affairs (2022) from SUNY Empire State University.

In 2023, she published her memoir, “We Exist,” chronicling her journey to diagnosis. Her other advocacy work includes being featured in Forbes, podcasts, webinars, and public speaking. Tanita is currently working on her second book and earning a master’s at Notre Dame of Maryland University. She enjoys art, music, and travel. Learn more about Tanita at tanitaallen.com.

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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…

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How October’s advocacy events sparked connection, HD awareness

This October has been one of the most inspiring and empowering months of my life as a Huntington’s disease (HD) patient advocate. I had the incredible opportunity to participate in three major advocacy events, each one special and impactful. Speaking to future doctors, celebrating with my dream medical team,…

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7 ways to support a friend with Huntington’s disease

It caught me off guard when a dear friend asked me recently, “How can I help you?” It wasn’t because I hadn’t been asked this before in different contexts, but rather that I realized I’d never truly given the question enough thought. Living with Huntington’s disease (HD) has…

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The intricacies of dating with a diagnosis of Huntington’s disease

Dating can be a complex and emotional experience under normal circumstances, but for someone living with Huntington’s disease (HD), the journey to find companionship presents unique challenges. One of the most painful aspects of dating with HD is the rejection I’ve encountered when disclosing my diagnosis. At…

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10 life hacks for navigating travel with Huntington’s disease

Traveling can lead to excitement and adventure, but for those of us with Huntington’s disease (HD), it can also pose significant challenges. Whether it’s navigating an unfamiliar airport or managing chorea (involuntary movement) or fatigue, the experience can feel overwhelming. I’ve found that traveling with Huntington’s requires…

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Grieving my old self and accepting change in life with Huntington’s

One of the most challenging aspects of living with Huntington’s disease (HD) is coming to terms with the progressive nature of the condition and the inevitable changes it brings. For those of us who are symptomatic, that involves not only adapting to physical and cognitive changes, but…

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My public journey since my diagnosis of Huntington’s disease

My name is Tanita Allen, and in 2012, I received life-changing news: I was diagnosed with Huntington’s disease (HD), a rare, neurodegenerative condition. Huntington’s is rare enough as it is, but the belief that it doesn’t affect people of African descent made getting a proper diagnosis even…


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