Tanita Allen has symptomatic HD. Every day at 9:00 A.M. and 9:00 P.M., she takes medications and supplements to control chorea and other symptoms and improve her overall health. Every day she practices mindfulness meditation and gratitude, prepares specific meals for herself and visits her mother in a nursing home.
Tanita is fond of saying, “I have HD, but HD doesn’t have me!” But this state of mind took a long time to achieve — under extreme duress — and requires a daily commitment that is difficult for most people to contemplate.
Tanita grew up in Cleveland, Ohio, with what she calls a carefree childhood, full of love, friends and good health.
“I am the very first person in my family to be diagnosed with Huntington’s — that’s very unusual.”
Assumptions Obscuring Diagnosis
Tanita was 35 years old, a paralegal, and living in an apartment in the Upper West side of Manhattan, when she began to experience involuntary movement in her toes that spread to her fingers, her upper trunk and face. It even spread to the vocal cords, creating vocal tics. While these symptoms were aggregating, she was seeing doctor after doctor and enduring test after test. But in the largest city in the U.S., flummoxed neurologists stopped short of ordering a test for HD.
“I was misdiagnosed by many doctors,” she said. “I was told that I am probably mentally ill and was tested for illegal drugs constantly in emergency rooms and institutions all over New York when I went there after the worst of my many falls. I was treated very poorly, and many among the hospital staff thought I must be a victim of domestic violence, because I was coming in there shaking. They thought I wasn’t being honest with them.”
She recounts that providers repeatedly made assumptions about things they thought fit the mold for her demographic, such as drugs, HIV, and lupus.
“General practitioners, neurologists, ER doctors and psychiatrists all agreed there was one thing that was off the table — HD. Because I was Black, they thought that was impossible,” she said.
The unwillingness to entertain the HD possibility was particularly confounding considering the fact that most Black people have white genetic ancestry as well.
Finding “House”
Finally, in 2012, after two years of a frustrating search, Tanita found a movement disorders specialist who said, “I think we need to test you for Huntington’s.”
“She ordered the blood test, but that night I got a phone call from her, and she was very upset. She said that her manager made her cancel that blood test because she was barking up the wrong tree since Black people don’t get Huntington’s disease. Frustrated, she encouraged me to find another doctor who would test me.”
Seven months later, she found the right doctor.
“He had his own practice, and was blunt and unconventional, like House on the TV show. He was intrigued by me, as he watched me walk in, a shaking mess,” she said. “I told him my whole journey and he ordered the test, saying ‘DNA doesn’t lie.’ He sent blood specimens to two different labs and they were in agreement that I was gene-positive.”
“There was some relief to knowing, but I was also horrified. I was in disbelief. How could all of those doctors have been wrong about me?” she said.
Worse, the doctor said her family, which included a mother, father, brother and sister, all in Cleveland, needed to be tested.
The providers there had the faulty suspicion that it would be her father who was gene-positive, because they thought aggressive HD was always passed on by males. It turned out, however, that her mother was the one who was gene-positive. Both mother and daughter had a CAG repeat of 39. But Tanita’s mother, at 60, was not yet symptomatic, and did not become so until her mid-60s, consistent with that lower-end repeat. Why Tanita was symptomatic so early was a puzzle.
New York Toxicity
In the meantime, Tanita learned that she had been getting excessive carbon monoxide and gas exposure due to multiple gas leaks in the apartment over 22 months, which she came to believe may have accounted for the early manifestation of her symptoms.
This news, on top of the confirmation of HD, drove Tanita into a 10-year legal battle (ultimately to no avail) and a downward spiral. She recalls that the absence of a supportive care team contributed greatly to her despair.
“From a psychiatric standpoint, I was extremely depressed and suicidal for a decade because doctors would tell me to my face, ‘Yeah, you’re going to die in about 10 years. If not, you’re probably going to end up in an institution in diapers, unable to walk or talk,’” she said. “I was horrified, and all that did was make me feel worthless, hopeless, and asking, what’s the point of living? I was grateful for having a definitive diagnosis, but I had not designed the adequate team of support.”
She came to understand that for many with HD who suffer depression, it isn’t necessarily due to the actual physical symptoms of HD as much as from what they are being told about this disease, about their fate.
“You’re like a dead man walking. When there is no hope, there’s no point in living, and that actually can become a self-fulfilling prophecy,” she said.
Home to Cleveland
In the thick of this anguish, she returned to Cleveland to be home again and close to family. There, she was fortunate to find physicians at the HDSA Center of Excellence at Cleveland Clinic who had a very different approach to living with HD.
That care team drew in multiple specialists and provided Tanita with holistic care, from symptom attenuation to the foundation for an optimistic mental state. She continues to work with them now, four years later.
“My care is awesome,” she said. “I have doctors who are rock stars. Money can’t buy this type of team. My health care is my number one priority, and I live a mile away from one of the best medical places in the world. I am going to stay close.”
Advocacy
Since receiving this care and support, Tanita has gone full throttle into motivating and helping
other people with chronic diseases.
A Harvard-trained neuropsychologist told her that going back to school would help stave off mental decline. Tanita ran with that advice, getting an associate’s, then a bachelor’s degree, and she is currently pursuing a master’s degree program toward a certificate in health and wellness coaching.
As part of her advocacy efforts, Tanita speaks at medical conferences, has been the keynote speaker at conventions for many organizations, and has been a guest on multiple podcasts and webinars. She was also featured in Forbes Magazine in May 2024.
“I especially love talking to medical students and telling them about HD while all that learning is fresh. They are our future in medicine. Let them see me, not just read about HD in a textbook! I want them to see an actual person, especially a person of color, with Huntington’s,” she said. “I want to be accessible online and share my excitement about life. I want to work with a community of people that collectively want to support each other.”
In 2023, she wrote a memoir, We Exist, as a narration of her journey with Huntington’s.
“I tell about the unique experience being a woman of color with HD living in a major city, before diagnosis and after diagnosis, because I was treated differently before and after. Even today, people in healthcare still look at you oddly. It’s important for them to get past thinking, if you’ve seen one person with HD, you’ve seen HD. We’re not a monolith.”
A second book is in the works, which Tanita says will be a practical guidebook to how to live your life, using her own daily routines and hard-earned wisdom as a template.
“I break things down, from how I manage my diet and how I do my mindfulness, to other specifics about my life,” Tanita said. “I also want to share more about how I approach life now. I live in an attitude of gratitude. I totally have transformed the way I think about the world, think about life — I am living my best life, and I’m excited about it.”
“I just turned 50, and I am excited about the fact that I surpassed this and so many other milestones that doctors thought would never happen. I am now in a role where I am able to really help other people,” she said.
Whether we are gene-positive or not, we are the better for her transformative message.
Tanita Allen’s book, We Exist, is available on Amazon.
Excerpt:
As you embrace your own journey, be courageous. Know that every challenge you face is an opportunity for growth and self-discovery. Embrace change, celebrate your milestones, find your tribe, and prioritize self-care as a means of fortifying your resilience….No matter the circumstances, there is always a path forward, and there are always reasons to hope and believe in the possibilities that lie ahead.
To learn more about Tanita Allen’s story, visit: https://tanitaallen.com