African American with Huntington’s Disease Explains Her Diagnostic Journey

Tanita Allen, a patient advocate with Huntington disease, discusses her diagnostic journey and advocacy work.

Huntington’s disease is an inherited condition that causes progressive degeneration of central neurons. It is caused by changes in the HTT gene and is inherited in an autosomal dominant manner.

Ms. Allen describes experiencing symptoms of Huntington’s disease at the age of 35 years. These included involuntary movements in her toes that eventually spread to her fingers, upper trunk, face, arms, and legs. She also experiences vocal tics and effects to her balance and gait.

Over the course of the next two years, Ms. Allen would be tested for numerous disorders including Lupus, Lyme disease, Sjogren’s disease, and HIV/AIDS. Throughout this process, she was told multiple times that Huntington’s disease was not an option, as her healthcare providers believed that black people did not get the disease. Finally, she found a doctor willing to order the Huntington’s disease test for her and it came back positive.

Following her diagnosis, Ms. Allen became involved in advocacy work to inform doctors on the presentations of Huntington's disease and other neurological disorders and the importance of considering multiple genetic possibilities. She has even written a memoir detailing her journey.