Putting a spotlight on community this HD Awareness Month

As an advocate and columnist for Huntington’s Disease News, I was excited to be chosen as a moderator for this site’s Community Spotlight. The initiative will highlight personal stories and raise awareness throughout May in honor of Huntington’s Disease Awareness Month.

My role involved finding other people affected by Huntington’s disease (HD) and asking them to write a short story about their journey. Some have been diagnosed with the condition themselves while others are a family member or caregiver of someone with the disease.

Through reading their stories and communicating with the writers, I’ve gotten to know them and their families. While I tested negative for Huntington’s in the summer of 2023, HD has affected generations of my family, taking the lives of my dad, granddad, and great-grandmother. As a result, I can relate, in part, to all of the Spotlight writers. I know what it’s like to see loved ones succumb to the disease, provide care, be at risk myself, and go through the genetic testing process.

Huntington’s unites us all in these unique ways.

Recommended Reading

May 1, 2024 by BioNews Staff

The trauma of Huntington’s disease is shared by the family

Finding support and inspiration through advocacy

My advocacy efforts didn’t begin with the Community Spotlight initiative, though. All of the projects I’m involved in are important to me, and I value the friendships that have resulted from my work.

I belong to the support group offered by my local branch of the Huntington’s Disease Association here in the U.K. I’ve taken part in research studies and panel meetings as part of the association’s HD Voice initiative. Volunteers help make decisions, such as whether accreditation should be awarded to care homes, and put information leaflets together for supports such as physiotherapy. I even became an ambassador for the organization.

I’m also involved in Enroll-HD, “a collaboration between Huntington’s disease families, clinicians, and researchers to accelerate progress toward effective treatments.” This observational study is available to HD families worldwide.

In addition, writing this column for BioNews, the publisher of this site, has allowed me to meet many others in the rare disease community. There’s a sense of solidarity among us; writers find true confidants in one another.

Still, I have moments of self-doubt when I wonder, “How many people are even reading my column? Does anyone really care? Am I helping anyone? Am I good enough? Can I keep going?”

But then people are kind enough to send messages of support through comments and social media. Some do seem to read regularly and message me frequently. Several have said the information I share is helpful to them. One message I recently received read, “I often feel helpless. You may feel alone but you are not alone. I love your articles because they always speak to my experience. Many, many thanks.”

Research has shown that expressive writing can benefit one’s overall health. I’ve certainly had this experience as I’ve shared my journey with others. But I’m grateful that reading about these experiences can be beneficial, too.

I’m so full of admiration for the Huntington’s community — particularly the Spotlight writers who have given their time and trusted me with their stories. I’m inspired by their courage, determination, and, most of all, their love for their families and others affected by HD. They help one another tirelessly, often in the face of adversity, with the hope of finding a cure.

I’m so proud of these writers, and I’m proud to be a part of this community. I know the Spotlight initiative will help to raise awareness, which is so important. Thank you to everyone who has supported us; you are truly special people.

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.