Shedding light on injustices while battling Huntington’s disease

Tanita Allen advocates for those harmed by neurological diseases, systemic injustice, and healthcare disparities. (Photos courtesy of Tanita Allen)

This is Tanita Allen’s story:

Life has taken me on a journey filled with unexpected twists, especially as I face the challenges of Huntington’s disease (HD). Sharing my story is a way to shed light on the discrimination and struggles I’ve faced as a Black woman seeking a diagnosis while grappling with this disease.

I began with a typical life, with no major health issues or childhood trauma. However, when I moved to a toxic apartment in New York City, my world changed. That unhealthy environment may have led to an earlier onset of HD.

Discrimination in the medical world added another layer of difficulty. Some people believe that HD can’t affect Black individuals, making it challenging to get a correct diagnosis. My journey became a vivid example of the hurdles faced by people from marginalized communities in both the medical and legal systems.

Despite being symptomatic, I want to show that it’s possible to lead a fulfilling life while dealing with this challenging disease. My commitment is to raise awareness and funds for HD research, because I hope to contribute to finding a cure.

With a degree in public affairs and certification as a paralegal, my professional background supports my advocacy work. My experience in customer service and sales adds a unique touch to my mission.

Tanita Allen’s memoir, “We Exist,” was published in December 2023.

My story is a testament to triumph over challenges, fighting discrimination, and emerging as a strong advocate for Huntington’s disease. It’s a reminder that even when faced with tough circumstances, determination and collective effort can bring about change. My journey is ongoing, and each day adds another chapter to the story of my resilience and determination.

My decision to step out of the shadows and share my story is fueled by a personal desire and a deep love for my mother. In doing so, I aim to shed light on our shared struggles and the strength that can be found even in the darkest moments.

At the end of 2023, I published a book, “We Exist,” to document my journey as an HD warrior. I have had many uphill climbs, but I will always continue to raise my voice for people battling this disease.

Outside of work, I find joy in simple things like music, reading, and the arts. I’m passionate about health and wellness and have a deep love for animals. These interests reflect different facets of my life beyond my HD journey.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #HDSpotlight, or read the full series.