Tanita Allen ’17, ’22: Proof that Black People Get Huntington’s Disease Too

May is Huntington’s Disease Awareness Month, and Tanita Allen wants you to know that people like her are out there. She’s referring to people who are African-American and have Huntington’s Disease (HD), an inherited and progressive neurological disorder that destroys nerve cells and that most people believe occurs only in people of European descent.

That’s why she wrote “We Exist,” a book about her struggles with HD. The book describes the role racism played in delaying her diagnosis, and the environmental impacts that accelerated her disease progression. It’s also a story of hope and her determination to live with purpose and joy despite having a neurodegenerative disease.

“My ultimate goal is to spread awareness and to spread it within marginalized communities,” she says. “I also want to raise money for grassroots organizations to help families with Huntington’s Disease, and other related neurological diseases like ALS, Alzheimer’s, and Parkinson’s disease.”

Getting Sick

Allen grew up in Cleveland, the middle child of three. Her childhood, she says, was nothing short of idyllic. In 2006, she moved to New York City to live with her boyfriend and got a job as a paralegal.

Two years later, the relationship fell apart. On the day she moved into her own place, she noticed a smell, an odor that her landlord attributed to fresh paint. But the smell lingered and slowly worsened.

Allen began having difficulties breathing, persistent nosebleeds, dizziness, and nausea. She had muscle spasms and involuntary movements. Her brain was foggy, and she sank into a deep depression.

Visits to the ER and doctor’s offices became routine. Although she was often tested for illicit drugs and alcohol use, no one ordered blood work or other tests like MRIs or CT scans.

Walking became increasingly difficult as her coordination deteriorated. “I was embarrassed,” she says. “People would move away from me, change their seats, and hug their kids closer. I had one guy yell at me, ‘How can you be drunk at 9 o’clock in the morning?’”

Neurologists dismissed her. She was prescribed anti-anxiety medications and sent to a psychiatrist. “One doctor said whatever you have, it’s not going away,” she says. “And I was like, ‘Who wants to live like this?’”

On the night she was going to kill herself, there was a knock on her door. A woman standing there said God had sent her to check on Allen. Together, they prayed, and Allen became determined to find answers.

Mystery Solved

When a neurologist finally tested her for HD, Allen’s results came back positive. Genetic tests showed she had a form that was not supposed to produce any symptoms until Allen was in her 50s or 60s, if at all. She blames the gas leak in her apartment for the early onset. The leak, which went on for eight months, had exposed her to carbon monoxide and natural gas. Despite her efforts to get it fixed, nothing was ever done.

In January 2012, Allen took the landlords and gas company to court. She spent the next decade trying to demonstrate that their persistent negligence had led to her health problems.

While going through the grueling legal process, Allen went to her first meeting of the Huntington Disease Society of America, an organization founded by Woody Guthrie’s widow Marjorie after he died of HD. The experience was eye-opening. Allen found camaraderie with others who had the disease. She became good friends with a woman six years younger than her who became a source of support.

In 2015, at her doctor’s suggestion, she also decided to sign up for a class at Empire State University. The experience helped get her mind off her health and legal battles. “I was going to take just one class here and one class there, but I wound up with two degrees,” she says. “They had accommodations for disabilities, and the professors and my mentor Alan Mandell were amazing.” She got her associate degree, followed by her bachelor’s in public affairs in 2022.

That year, two months after moving back to Cleveland, Allen learned she had lost the lawsuit. The court said she had failed to prove her disease was caused by the gas leaks. Allen was crushed.

“It was a decade-long torture, and I’m not happy with the outcome,” she says. “But if I had won, they might have made me sign something where I couldn’t tell my story.”

A New Road

Being back home enabled her to seek treatment at the Cleveland Clinic, where she now has a team of providers that includes a neurologist, psychiatrist, psychologist, occupational therapist, physical therapist, and speech therapist.

She is also living near her mother, whose HD is genetically identical to Allen’s. Her mom began developing symptoms in her mid 60s and is now in a nursing home after an unrelated stroke. Allen’s sister also tested positive. Her brother, she says, refuses to get tested.

Allen is determined to live as well as she can. She eats a brain healthy diet, sleeps eight hours a night, and exercises. To manage her symptoms, she takes up to 25 drugs a day, including Xenazine, an older HD drug that controls erratic movements. And she maintains a positive attitude, celebrating victories like giving up her cane and shower chair.

These days, she’s working on a second book about how she’s living her best life. She’s also developing her blog and practicing public speaking. At HD events, people still assume she’s a caregiver or social worker, not a patient.

“I tell them, ‘No, I am someone with Huntington’s Disease, I’m gene positive, and am symptomatic,” she says.

To learn more, visit her website at www.tanitaallen.com.