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