Huntington's Disease Support Spaces
There are some support spaces online, but I've found that most of our spaces - as wonderful as they are - naturally center caregiving and late-stage disease. Those conversations matter tremendously, but I kept looking for a space that centered the patient's voice, and could not find one. Some of these spaces are a bit of a free-for-all with bad science and truly awful bashing of these people's loved ones. As a patient, it's really disheartening to go into a space looking for help and just hear what titanically horrible people we are/will be to exist next to. It's not the introduction we deserve.
The modern reality of Huntington's Disease is changing rapidly because of advances in genetic testing, earlier diagnosis, increased awareness, and emerging research.
People are now learning about their HD earlier than ever before and we need to build some robust spaces for those of us looking for safe support spaces.
So I built one. We Are HD (on facebook) is a private, patient-centered HD community for people with a diagnosis early stage/mid stage, just diagnosed/known for years. Allies and caregivers are sooo welcome ... with the understanding that it's patient-voice first.
If that sounds like something you've been looking for, come find us.
No shade to any groups - just filling a different lane. And this group might not be everyone's cup of tea, but I have been running a 13,000 member group in Durham, NC for over 11 years and it is just the nicest place on the planet - cause kindness, humor, respect, and a 100% no ass-hat rule.
Take a peek and see if it's your jam.
Here is the group description on FB:
A Patient-First Huntington's Disease Community.
The modern reality of Huntington's Disease is changing rapidly because of advances in genetic testing, earlier diagnosis, increased awareness, and emerging research.
People are now learning about their HD earlier than ever before.
That changes everything.
Many existing HD spaces focus heavily on caregiving, crisis management, late-stage disease, exhaustion, and grief. Those conversations matter deeply, but there are enough of us now - we need our own space. This is THAT space. Allies and caregivers are welcome here - with the understanding that this is our space first. Center us accordingly.This is a place for you to celebrate your wins, talk about uncertainties, isolation, and create friendships and community.
I have a very strong "no ass-hats" rule - and that includes people peddling bad science, fake cures, and MLM supplements. We follow the actual research. Misinformation and predatory nonsense get removed.
We are an intentionally anti-racist community. We strive to create a welcoming and inclusive environment for all of our neighbors. Racism, sexism, homophobia, transphobia, xenophobia, or otherwise discriminatory comments will result in immediate removal from the group. We welcome Black voices centering their specifically unique lived experiences at the intersection of Huntington's Disease and America's healthcare disparities. If you cannot handle that kind of big kid talk, this is not the group for you...and that's OK!
Also, great likelihood I will cuss - so get ready to clutch those pearls, Mama