Tanita Allen, 49, of Cleveland, OH, overcomes Huntington's disease and the discrimination she has faced along the way.
Life has taken me on an unexpected journey, one that I never imagined. After developing symptoms in 2010, I learned I had Huntington's disease two years later. By sharing my story in my new book, We Exist, I hope to shed light on not just my struggle with the disease but also the discrimination and obstacles that too often accompany it.
The challenges are overwhelming – from the involuntary movements of my face and body to speech and swallowing problems. Growing up in Cleveland, I came from a happy, stable family life and faced no health issues. I followed a healthy and smooth path into adulthood—until I didn't.
The symptoms started subtly with a toe twitch when I was 35 years old. At first, I thought they were muscle spasms, something harmless. The involuntary movements began spreading, from my toes to my fingers, then to my upper body. My torso would twist uncontrollably, and soon my face also would spasm. I took medication to relax my muscles, but once it wore off, I was desperate for relief.
Many of the doctors I saw thought I was either an alcoholic or a drug abuser. It seemed even more difficult to get a diagnosis because some mistakenly think Huntington's disease doesn't affect Black individuals. This misconception likely contributed to delaying my diagnosis until I was 37. At a follow-up appointment later that year, I learned I had the Huntington's disease gene.
The truth is, you don't often see people who look like me dealing with Huntington's disease. We exist, but our stories are seldom told. My journey, difficult as it has been, is a testament to the struggles people of all colors face, especially those with rare diseases.
Living with Huntington's has its challenges, including difficulties with memory and mood changes, but I am determined to show that life can still be fulfilling. My involuntary movements are mostly managed with a treatment called tetrabenazine (Xenazine), and I have adopted mindfulness techniques such as meditation, yoga, and healthy eating to give me energy and a positive attitude. This holistic approach has given me the confidence to be a graduate student, focusing on health and wellness studies, at Notre Dame of Maryland University. My ultimate goal is to work with others living with chronic illness.
My journey isn't over; every day is a new challenge with new chapters unfolding. I've had many uphill climbs and will continue to, but I want to raise my voice for others who have shown me how the power of determination and hope can lift up everyone, including myself.
—As told to Paul Wynn
Discover More
To hear more of Tanita Allen's story, tune in to our podcast episode with her.
