Huntington’s advocacy seeks clinician training, mental healthcare

I recently connected with patient advocate Tanita Allen through my work for Huntington’s Disease News. In May, for Huntington’s Disease Awareness Month, Tanita kindly shared the story of her own Huntington’s disease journey for this website’s Community Spotlight project.

Huntington’s disease has affected several generations of my own family, taking the lives of my dad, granddad, and great-grandmother. I tested negative for the disease last summer.

Tanita has written a book about her journey called “We Exist.” While she lives in the U.S. and I live in the U.K., we’ve stayed in touch with each other via email.

She recently shared with me a webinar she participated in, part of a Science/AAAS series, titled “Blooming against odds: Successfully navigating mental health in rare disease.” In it, Tanita spoke eloquently about her experiences and how they affected her mental health.

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Tanita was the first member of her family to be diagnosed with Huntington’s disease. She said that for several years, various neurologists had dismissed her symptoms. She was mistakenly told that as an African American, she couldn’t have Huntington’s.

This caused her to become anxious, depressed, and frustrated. She said she felt a “disconnect between her body and mind.” She had no control over the movements she was experiencing in her body, which she now knows to be chorea. She felt embarrassed to go out in public, as people would stare or move away from her, afraid of what they didn’t understand. She became isolated and ashamed of her symptoms.

It took Tanita two years to receive a diagnosis. She has now moved back to her hometown and is fortunate to have Huntington’s disease specialists looking after her. They take a holistic approach and are addressing her medicinal needs, but they’re also open to other approaches, she says. They take care of her mental health and address her sleep issues and dietary needs. They’re also open to alternative therapies like acupuncture, Tanita adds.

For many people like Tanita, it can several years to receive a rare disease diagnosis, says Kathleen Bogart, another panel member of the webinar and an associate professor of psychology at Oregon State University. Women and people of color are more likely to experience a long journey to diagnosis, which often entails accusations of drug seeking or other falsehoods, she says. This can result in healthcare trauma, leaving people feeling fearful, misunderstood, and stigmatized.

Patient advocate Matt Bolz-Johnson, the mental health lead at EURORDIS, an alliance of rare disease nonprofit organizations, says that if delivered in a positive way, a diagnosis can be a relief for many, because it explains why they’ve been experiencing various symptoms. It can provide clarity and certainty. As a result, this can help to improve mental health.

However, if a diagnosis is delivered in a negative way, it can adversely affect future interactions during appointments with medical professionals, he says. By considering mental health and taking a holistic approach from the outset, this can be avoided.

Bolz-Johnson also highlights the need for clinicians to be “rare aware.” Rare diseases have complex holistic needs, and a lack of awareness about them contributes to feelings of isolation and frustration. Better training for clinicians could help to curb this problem, he adds.

Tanita says she finds her writing to be therapeutic, and it has helped her to register her thoughts and process her journey. She focuses on practicing good sleep hygiene and exercising, including doing yoga and walking. She practices meditation and finds spending time with animals comforting. She also enjoys painting, listening to music, and focusing on the present moment.

Bogart recommends the “spoon theory” to help people with chronic conditions manage their energy levels throughout the day. According to the theory, spoons represent units of energy for patients each day. Knowing your maximum number of “spoons” each day can be a visual reminder of how much energy you have left for other activities.

Bolz-Johnson adds that better physical health, access to employment, and social inclusion contribute to better mental health overall. If these issues can be worked on in the Huntington’s community and in the broader rare disease communities through training for clinicians and by raising more awareness, it will improve the lives of people living with these conditions.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.