Be Empowered by Tanita Allen: Finding Strength in Our Shared Journey

Hello, everyone!

I am truly honored to introduce myself as the newest columnist for the International Huntington Association’s online platform. Writing for this community is not only a privilege, but a calling that fills my heart with gratitude. I want to extend my deepest thanks to the incredible team at the IHA for welcoming me into this space. Your dedication to the global Huntington’s Disease (HD) community inspires me, and I am humbled to share my voice with you all. For those of you who don’t know me yet, my name is Tanita Allen, and like many of you, my journey with Huntington’s Disease has been deeply personal, complex, and transformative. I was officially diagnosed in 2012, but my road to that diagnosis was far from easy. As a young Black woman experiencing early symptoms, I encountered medical professionals who dismissed my concerns, misdiagnosed my condition, and even told me that Black people don’t get Huntington’s Disease. It took two painful years, countless doctors, and relentless self-advocacy before I finally received confirmation through genetic testing.

That journey, one filled with frustration, resilience, and ultimately empowerment led me to write my memoir, We Exist. In my book, I document not only the struggle to be heard but also the emotional and physical challenges that come with living with HD. More importantly, I share how I reclaimed my life, refusing to be solely defined by my diagnosis. HD may be a part of my story, but it is not my whole story.

And that is what I hope to bring to this column: a message of empowerment. Whether you are gene-positive, symptomatic, a caregiver, or someone simply seeking to understand HD better, I want Be Empowered by Tanita Allen to be a place where we uplift one another. This space is for honest conversations, encouragement, and actionable steps toward living a fulfilling life despite the challenges we face.

A Global Perspective on Huntington’s Disease

One of the most beautiful things about the Huntington’s community is that we are everywhere. HD knows no borders, and yet our experiences—though unique—are deeply interconnected. No matter where we come from, we share the same fears, the same hopes, and the same determination to fight for better treatments, greater awareness, and a future where no one has to walk this path alone.

In many parts of the world, HD remains misunderstood, stigmatized, or even hidden due to fear and lack of awareness. Families struggle in silence, and too many people go undiagnosed or lack access to essential medical care and support networks. That is why global platforms like the International Huntington Association are so crucial. They remind us that we are not isolated in our experiences. We are part of a worldwide movement of people advocating for dignity, research, and change.

More Than a Diagnosis

If there is one message I want to share with you today, it is this: We are more than Huntington’s Disease. Yes, HD affects our bodies, our minds, and our daily lives—but it does not define our worth, our dreams, or our ability to experience joy.

We are artists, scholars, parents, entrepreneurs, and advocates. We are people who love, who create, who inspire. We are individuals with voices that matter.

Living with HD means adapting, but it also means embracing every victory—big or small. It means finding new ways to do the things we love, surrounding ourselves with people who uplift us, and advocating for ourselves in medical and social spaces. It means refusing to let a diagnosis dictate the quality of our lives.

In this column, I will explore topics such as:

• Navigating medical care and advocating for yourself in the healthcare system

• The emotional journey of processing an HD diagnosis

• Breaking down stigma and challenging misconceptions

• Finding strength in community and support networks

• Practical tools for living well with HD—mentally, physically, and emotionally

But most importantly, I want this to be a conversation. I want to hear from you. What challenges are you facing? What victories have you celebrated? What stories need to be told? Let’s use this space to learn from one another and remind each other that we are not alone.

A Future of Hope

The road ahead for the HD community is filled with challenges, but it is also filled with hope. Research is advancing. More people are speaking out. Awareness is growing. Every time we share our experiences, we chip away at the stigma. Every time we advocate for ourselves and others, we push for progress.

To my fellow warriors across the globe: You are seen. You are valued. And together, we are stronger.

Thank you for allowing me to be part of your journey. I can’t wait to embark on this new chapter with you.

Until next time, Tanita