Resources of Note—Atrial Fibrillation Patient Discussion Forums
July 22, 2008 7:22 AM CT
StopAfib.org was recently featured in an article on Patient Web Exchanges Provide Benefits.
The article talked about how patients with better social networks had better outcomes. Having a social network for support and help with atrial fibrillation can be invaluable. That’s why we’re creating a network around the Atrial Fibrillation Blog and StopAfib.org.
It’s been a while since we’ve talked about various atrial fibrillation discussion forums and support networks, but since so many new folks have joined us in the past month, it’s time for that again with some newer ones added.
Below are some places to check out, some of which I hang out at pretty regularly, at least when I’m not on the road. (I’ve been known to check in on the forums while stranded at O’Hare airport in blizzards several times this year, but it’s pretty hard to reply in depth from my Moto Q cell phone’s tiny little keyboard.)
Here are some great resources for you:
- A-fibcures Forum — Non-pharmaceutical cures for afib
- AFIB Support Forum — Support group for those challenged with afib
- Lone Atrial Fibrillation Forum — For those with lone atrial fibrillation (no heart disease) — THE place for dietary approaches to afib
- P Atrial Fib Support — For information and emotional support to make afib more bearable
- Atrial Fibrillation Association UK — Newer AF support group created by the Atrial Fibrillation Association in the UK
- Daily Strength Atrial Fibrillation Support Group — Less busy as a discussion forum, but provides patient journals
- Atrial Fibrillation Blog — Provided by StopAfib.org for your comments and discussion
Many of you reading this already participate in one or more of these groups so you know the rules of the road. But if you’re new to a group, just remember that each group has its own personality and focus. Please consider reading previous postings and lurking for a while until you understand the group’s nuances, and then just jump in.
But having participated in discussion groups for 14+ years, I’d encourage you to not take anything said on the group too seriously or personally as you just can’t tell how it was meant. Sometimes comments are made in jest, but it’s hard to tell.
And while having an atrial fibrillation episode, you just may not express yourself in the “best” way possible, so please don’t take offense or jump all over others for their words or language. In some cases, English is not their first language and they are doing a very admirable job of communicating. Could you do as well in their language?
So just keep it cool, be respectful of your fellow afib travelers, and please don’t fan the flames. Please provide help and support to others in exchange for the help you get. Most of all, have fun with it and make some great new friends.
Have you found other groups to share with your fellow travelers on this afib journey? We’ve posted this information at the Atrial Fibrillation Blog as a resource for patients, so please post a comment there to share any other discussion groups or social networks you recommend.
Please help and support each other through this afib journey, and we will continue to build tools to help as well. And we’re always open for your support in this mission.