By Tanita A.
My name is Tanita and I am an African-American woman living with Huntington’s Disease. I did not have a family history of Huntington’s Disease; I am the first person diagnosed in my family.
I was met with racism in the medical community and was told repeatedly that “Black people don’t get Huntington’s Disease.”
I document my life in my memoir called, “We Exist.” In this memoir, I discuss what it is like to live being symptomatic with Huntington’s Disease, including my medical journey and how I eventually got a definitive diagnosis. Unfortunately, there is still no cure for this horrific disease. Each person with Huntington’s Disease is treated according to their individual symptoms.
From the NORD Rare Disease Report: Huntington’s disease is a genetic, progressive, neurodegenerative disorder characterized by the gradual development of involuntary muscle movements affecting the hands, feet, face, and torso and progressive deterioration of cognitive processes and memory. It progresses slowly—symptoms commonly develop between ages 30 and 50 and a person may live for another 15-20 years after the onset of symptoms. Approximately 30,000 people in the United States have Huntington’s disease and another 200,000 are at risk of developing the condition.
In addition to enjoying creative writing, reading and art, I am a passionate advocate for Huntington’s Disease and other rare diseases. I want to raise awareness and educate the medical community especially about this condition. I also want to raise awareness of disparities that occur in minorities with rare diseases.
I rarely see people that look like me with Huntington’s Disease. I hope my story will impact others by raising awareness that we exist and that racial disparities occur with people of color with rare diseases.
To learn more about Huntington’s Disease or to view a list of patient organizations providing assistance to patients with this condition, please read the NORD Rare Disease Report
To learn more about Tanita’s book and how to read it, visit her website.
COMING SOON:
The National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition (RDDC), with support from the Black Women’s Health Imperative, will be releasing the findings of our Rare Disease Diversity Survey, the first-ever national survey of underrepresented rare disease patients and caregivers in the United States. The survey looks at barriers, burdens, and disparities facing minority ethnic groups, rural populations, LGBTQ communities, and low-income Americans seeking diagnosis, treatment, and access to affordable care for their rare conditions. To be notified when the Rare Disease Diversity Survey findings are released, sign up for NORD’s newsletter here.
