Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

Embracing the Huntington’s disease community

Erin Paterson
Conditions
November 30, 2023
Share
Tweet
Share

I had chosen a seat towards the back of the conference room because I noticed the legendary Jimmy Pollard sitting there. I didn’t want to miss the chance to sit next to this Huntington’s disease (HD) advocate and all-around amazing person.

I was at the Help4HD conference in Detroit, Michigan. It was my first time attending an event like this on my own. In the years past, I wouldn’t have had the emotional strength to do such a thing, but I knew there were going to be a bunch of people there whom I had met only virtually, through social media, or while working on my second book about Huntington’s. It was an opportunity I didn’t want to pass up, and I am glad I didn’t because something wonderful happened that weekend.

At the conference, I spent the day chatting with Jimmy and the other people at our table, listening to speeches, and learning about the latest HD research. Jimmy was one of the guest speakers, and he brought me to tears several times with his inspirational speech. He explained some of the symptoms of HD in easy-to-understand terms. He had us participate in his famous handwriting exercise, where we had to write our names painfully slowly, to give us an idea of what it felt like to have HD. He explained how we have to wait longer than normal for people with HD to formulate an answer to our questions. And he spoke about the dedication and enduring love it takes to be a caregiver.

From my seat at the back, I had a good view of the entire room. Throughout the day, I watched the people at the tables in front of me, and I witnessed something very special. A number of people were symptomatic for HD, three or four had visible chorea, and they were just a normal part of the crowd.

I don’t know anyone else with HD in the town where my dad lives, and the disease is not often talked about in my family. This sometimes makes me feel a bit out of place in my everyday life. It can be quite isolating and lonely, especially since not everyone in my family is accepting of my dad’s HD; not everyone is willing to alter their behavior, like Jimmy suggested, to allow for better outcomes for him. But at the conference that day, the people with HD felt like valued members of the community. In fact, it seemed as though they were showered with even more love and attention because of it.

To see people being patient and waiting for someone to answer a question instead of talking over them, to witness a man with HD speak on a panel about his experiences and to have the audience understand when he strayed off-topic, to see a man with considerable arm movements dancing until the DJ played the last song of the night—to see people with HD fitting in—is not something I have experienced before. Witnessing the love and understanding of the HD community gave me hope for my future. It showed me it is possible to fit in and be accepted even when I have symptoms of the disease.

The next morning, I was in the hotel lobby saying goodbye to some of the wonderful people I had met. Like Erika from HD Reach, who volunteered her time to work on my book; Teresa, who helped organize the event; Adam, who was always smiling and reminded me of my dad 15 years ago; and the three Wyatt sisters, who were there lovingly supporting each other. Around these people, I felt a sense of calm because somehow they reminded me of my own relatives. When I went to say goodbye to the sister with long, straight hair, she leaned over and gave me a hug. It wasn’t just a short hug of acquaintances; it was a long hug of comfort and understanding. I pulled back when I thought it was over, but she kept hugging me so I leaned into it even more.

What I learned that morning was that people from the HD community are really good huggers. I received hugs from everyone before I left. Some felt deep and heavy with understanding, and others felt happy and hopeful because of a new friendship made. But overall, those hugs and the people I met that weekend made me feel loved and accepted, for the me I am now and the me I will be in the future, the one who is symptomatic for HD.

That is a special feeling I will never forget.

Erin Paterson is a writer and the author of Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community and All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.

Prev

Unlocking the potential of allied health roles for a thriving health care system

November 30, 2023 Kevin 1
…
Next

Ketamine myths and facts: What PCPs need to know [PODCAST]

November 30, 2023 Kevin 0
…

Tagged as: Neurology

Post navigation

< Previous Post
Unlocking the potential of allied health roles for a thriving health care system
Next Post >
Ketamine myths and facts: What PCPs need to know [PODCAST]

ADVERTISEMENT

More by Erin Paterson

  • Why the words doctors use matter more than they think

    Erin Paterson
  • The heartbreaking realities of being a caregiver with Huntington’s disease

    Erin Paterson
  • Advocating for a sick parent by confronting physician bias

    Erin Paterson

Related Posts

  • Gun violence is our society’s disease

    Leslie Mattson, MD
  • Poverty: America’s disease with devastating consequences

    Osmund Agbo, MD
  • The surprising risks of long-term proton pump inhibitor use

    Christopher Medrano, MD
  • Mental health issues and the African American community

    Lashawnda Thornton, MSW
  • Expanding health care access and equity through telehealth

    Gjanje L. Smith, MD, MPH, Wanneh A. Dixon, and Maria Phillips, JD
  • What do white LGBTQIA+ people owe to the black community?

    Kristin Puhl, MD

More in Conditions

  • Why medicine must stop worshipping burnout and start valuing humanity

    Sarah White, APRN
  • Why perinatal mental health is the top cause of maternal death in the U.S.

    Sheila Noon
  • A world without vaccines: What history teaches us about public health

    Drew Remignanti, MD, MPH
  • Unraveling the mystery behind one of the most dangerous pregnancy complications: preeclampsia

    Thomas McElrath, MD, PhD and Kara Rood, MD
  • How community paramedicine impacts Indigenous elders

    Noah Weinberg
  • Pain is more than physical: the story your body is trying to tell

    Katie Hatt, DO
  • Most Popular

  • Past Week

    • Why are medical students turning away from primary care? [PODCAST]

      The Podcast by KevinMD | Podcast
    • Here’s what providers really need in a modern EHR

      Laura Kohlhagen, MD, MBA | Tech
    • Why “do no harm” might be harming modern medicine

      Sabooh S. Mubbashar, MD | Physician
    • How community paramedicine impacts Indigenous elders

      Noah Weinberg | Conditions
    • Why Canada is losing its skilled immigrant doctors

      Olumuyiwa Bamgbade, MD | Physician
    • How to speak the language of leadership to improve doctor wellness [PODCAST]

      The Podcast by KevinMD | Podcast
  • Past 6 Months

    • Why tracking cognitive load could save doctors and patients

      Hiba Fatima Hamid | Education
    • Why are medical students turning away from primary care? [PODCAST]

      The Podcast by KevinMD | Podcast
    • Why “do no harm” might be harming modern medicine

      Sabooh S. Mubbashar, MD | Physician
    • Here’s what providers really need in a modern EHR

      Laura Kohlhagen, MD, MBA | Tech
    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • How medical culture hides burnout in plain sight

      Marco Benítez | Conditions
  • Recent Posts

    • Why Canada is losing its skilled immigrant doctors

      Olumuyiwa Bamgbade, MD | Physician
    • Why doctors are reclaiming control from burnout culture

      Maureen Gibbons, MD | Physician
    • Would The Pitts’ Dr. Robby Robinavitch welcome a new colleague? Yes. Especially if their initials were AI.

      Gabe Jones, MBA | Tech
    • Why medicine must stop worshipping burnout and start valuing humanity

      Sarah White, APRN | Conditions
    • Why screening for diseases you might have can backfire

      Andy Lazris, MD and Alan Roth, DO | Physician
    • How organizational culture drives top talent away [PODCAST]

      The Podcast by KevinMD | Podcast

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

Leave a Comment

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

  • Most Popular

  • Past Week

    • Why are medical students turning away from primary care? [PODCAST]

      The Podcast by KevinMD | Podcast
    • Here’s what providers really need in a modern EHR

      Laura Kohlhagen, MD, MBA | Tech
    • Why “do no harm” might be harming modern medicine

      Sabooh S. Mubbashar, MD | Physician
    • How community paramedicine impacts Indigenous elders

      Noah Weinberg | Conditions
    • Why Canada is losing its skilled immigrant doctors

      Olumuyiwa Bamgbade, MD | Physician
    • How to speak the language of leadership to improve doctor wellness [PODCAST]

      The Podcast by KevinMD | Podcast
  • Past 6 Months

    • Why tracking cognitive load could save doctors and patients

      Hiba Fatima Hamid | Education
    • Why are medical students turning away from primary care? [PODCAST]

      The Podcast by KevinMD | Podcast
    • Why “do no harm” might be harming modern medicine

      Sabooh S. Mubbashar, MD | Physician
    • Here’s what providers really need in a modern EHR

      Laura Kohlhagen, MD, MBA | Tech
    • What the world must learn from the life and death of Hind Rajab

      Saba Qaiser, RN | Conditions
    • How medical culture hides burnout in plain sight

      Marco Benítez | Conditions
  • Recent Posts

    • Why Canada is losing its skilled immigrant doctors

      Olumuyiwa Bamgbade, MD | Physician
    • Why doctors are reclaiming control from burnout culture

      Maureen Gibbons, MD | Physician
    • Would The Pitts’ Dr. Robby Robinavitch welcome a new colleague? Yes. Especially if their initials were AI.

      Gabe Jones, MBA | Tech
    • Why medicine must stop worshipping burnout and start valuing humanity

      Sarah White, APRN | Conditions
    • Why screening for diseases you might have can backfire

      Andy Lazris, MD and Alan Roth, DO | Physician
    • How organizational culture drives top talent away [PODCAST]

      The Podcast by KevinMD | Podcast

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Leave a Comment

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...