The Value of Private Facebook Groups for the Huntington’s Community

B.J. Viau avatar

by B.J. Viau |

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Where do you go to find support and information about Huntington’s disease (HD) when you need it most? This question will certainly receive a plethora of answers.

Having been part of the Huntington’s community for 25 years, I’ve utilized many different options based on my needs. In today’s world of “technology at your fingertips,” I am curious where others are flocking, and how this may change in the future.

I am always trying to keep a pulse on the HD community. What issues are people experiencing, and what solutions are needed?

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For the past couple years, my go-to place for staying in the know has been Facebook. Ten years ago, I never would have thought this would be the case. I’m not alone, as there are over 25,000 members from around the world in the top 10 private Huntington’s groups.

Not only are these groups well populated, but they are also active. Some groups get more than 10 posts per day, and I’ve seen some posts with over 100 comments. People are seeking information about anything and everything HD-related, from which medicines to take, to how best to handle a loved one’s anxiety, to the latest news on clinical trials.

The most popular posts I see are from people seeking information about genetic testing. These come up almost daily, with people asking specific questions about how to get the test, how long it takes for results to come in, or how to best prepare for the test.

It’s a beautiful thing to be able to ask a question and receive numerous responses almost instantaneously. Most groups don’t seem to have an agenda; they’ve simply been created in recent years by people looking to connect with others. Facebook’s push for more group engagement has allowed more people to stumble upon them and join over time.

The groups have administrators, but beyond some basic rules, they are generally a free space for people to communicate. I don’t think the creators ever expected to see their groups reach thousands of people, but they’ve created a platform that people really value.

Most of the groups are private, meaning you can’t see the group’s conversation unless you are admitted by an administrator. Most require you to answer a few questions to validate that you’re actually an HD community member looking for support, and not a bot.

Although there is beauty in the immediate community support, it’s important to be cautious and exercise judgment about which comments to trust, and which to dig into a bit more. Many people are simply sharing their own personal experience, but it can be dangerous if their comments sound like medical advice. I see many incorrect or misguided comments that could confuse someone looking for information.

Overall, I would recommend Facebook groups to the Huntington’s community, but remind folks that the groups are still a form of social media, and you can’t trust everything that others post.

To find a list of these private groups, go to Facebook, search “Huntington’s disease,” and click on “Groups.” Best of luck!

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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.

Comments

Flaca Campos avatar

Flaca Campos

I spent a lot of time in various Facebook Huntington’s groups and got to know a lot of people after I tested positive. My sister was also active in these groups. She tested negative. When my sister and mother decided to completely ghost me, nobody in these groups empathized with me. Everybody involved with the Huntington’s groups (let’s be real- it’s mostly “caregivers”) sided with my sister and dismissed me as crazy… well, because I have HD. This runs counter-intuitive to the purpose of the groups, if that purpose is supporting people with Huntington’s disease. I find this is also the case with the HDSA- so many support groups for “caregivers”, and zero support groups for people who actually have HD. I no longer donate to HDSA and discourage others from doing so, and I am no longer a part of any Huntington’s disease group.

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B.J. Viau avatar

B.J. Viau

Hi - thanks for sharing your experiences. I empathize with you as I see what you describe happen a lot of times in these groups. HD sucks, but those of us in the groups should fully understand this and identify when/where people need support - not the opposite. Really sorry to hear you are no longer associated to these groups, but hope you're finding what you need elsewhere. Would love to learn more of where you turned to beyond Facebook/HDSA. Take care and thanks for reading! -BJ

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Antonio Maltese avatar

Antonio Maltese

I on the other hand have found a multitude of resources from both HDYO and HDSA. They have both been a stable source of support after testing positive and I can personally thank BJ Vieu and Seth Rotberg and Jennifer Simpson and so many others for caring about the HD community.

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B.J. Viau avatar

B.J. Viau

Thanks for the candid comments, Antonio. There are definitely so pros and cons and obvious improvement that could be made in these groups. Hope you're well, man!

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Antonio Maltese avatar

Antonio Maltese

I do however agree that there is a chasm and a schism between some caregivers and those who have tested positive and those who have tested negative. We need to learn how to bridge this divide. Ohana and love and prayers to all suffering from Huntington’s Disease and others.

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T. Welter avatar

T. Welter

Thank you for this post and for taking the time to help people affected by HD.

I am 35, live in Germany, and come from a HD family (in Brazil). I don't know why it took me so long to realize I should educate myself more about this topic! I knew about the disease but literatelly never sat down to search and learn more about it, until today! This website and posts like this one have been a great way to start this journey today. I am joining some Facebook groups now too, as suggested.

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B.J. Viau avatar

B.J. Viau

Welcome to the community. It's not always one you "want" to be a part of, but it's one you are grateful to be a part if you have to be. Please reach out if I can be of any help or guidance. God Bless -BJ

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