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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It’s not my job to be a peacemaker as someone living with Huntington’s

There is a particular kind of exhaustion that comes from being sick and still feeling responsible for everyone else’s comfort. It is one thing to manage Huntington’s disease. It is another thing entirely to manage the emotions, assumptions, awkwardness, and reactions that can swirl around it. Sometimes I walk…

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5 mental health coping strategies that help me in life with HD

Living with Huntington’s disease (HD) presents many physical hurdles, but the toll it takes on mental health is often overlooked. Many people, including myself, experience intense bouts of anxiety and depression as part of this journey. Coping with the physical symptoms of HD can be exhausting, and the…

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What I wish I’d known: Advice for the newly diagnosed with HD

Navigating a new diagnosis of Huntington’s disease (HD) is a profoundly personal journey through a range of emotions, from shock and disbelief to worry. I know this experience all too well. Reflecting on my own path from diagnosis to today, there are so many lessons I wish I could…

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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…

Columns

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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