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In this episode a reader asks if there are any a-fib forums, blogs, and websites I’d recommend (besides my own blog). I start the episode off explaining why you have to be careful visiting these online resources and how to approach them so they don’t get you depressed. I spend the rest of the episode highlighting the best a-fib forums, blogs, and websites available today!
Transcript and links to resources mentioned are provided below:
Phil writes, “Travis, I love your blog and the information you provide, but I was wondering if you know of any other AFib forums or websites that you’d recommend?
Well, Phil, you’re in luck. I actually do have some resources that I can refer to you, so let’s pull up the list here. All right. The first one I’m gonna recommend… Well, before I even get into recommendations, I just wanna take a step back and say something. I actually don’t encourage AFibbers to spend a lot of time online in forums or communities because, to be quite honest, they can be extremely depressing. You gotta realize what’s going on here, when you go into these forms and communities, it’s sort of when you look for reviews on products or services or companies online, and it seems like a lot of times, if someone leaves a positive comment, it’s just very brief. But the really ugly reviews are the people that had a really bad experience. And people just in general don’t typically leave their reviews of a product, service or company if things go well. That’s just human nature. People typically will only take time to leave reviews if they had a really bad experience.
Well, it’s the same thing when it comes to health conditions, when it comes to going to forums and communities. People that are doing well, people that have AFib that are managing it or that have been cured of their AFIB through an ablation or medications or perhaps even natural ways, a supplementation, a diet, lifestyle changes, they’re not spending time typically in forums and communities. So, you’re not going to hear from these people. You’re not gonna hear the positive, uplifting, motivational stories.
So, when you go to these forms and communities, what you have then are people that are really struggling. They have not found their cure, they have not found their solution, and these are people that, for a lack of a better term, are very desperate. That’s why they’re online, that’s why they’re going in these forums and communities, ’cause they’re reaching out, they need help. So, if you’re new to AFib, or you’ve had AFib for a while and you start spending time in these forums and communities, it can really, really get you down. And so, I don’t encourage people to spend a lot of time in those forums and communities.
Now, I’m not saying don’t go to them, because they can certainly be helpful, but what I just tell people is as just caution, don’t get obsessed with them, don’t spend a lot of time. Get in, if you have a specific question, look for answers to your specific question, or post a question, get some comments and some answers, and then get out. And then also, just take everything that you read in a forum, and in a community, or in blog comments, take it all with a grain of salt. Again, with this mindset that knowing, “Okay, the people that are probably responding to my question, or other people’s questions in these various communities, are people that are really struggling. Okay, I’m not necessarily getting help, or hearing from people that have done very well, or are doing very well.” So you just gotta keep that in mind. And just case in point, right now, statistically they say, in the US alone, approximately 2.7 to 6.1 million people in the US have AFib.
All right. So take my website, for example. I have one of the more popular AFib blogs on the internet right now. And my blog generates about, right now the last count was just over 2,200 comments, and I can tell you that probably 90% of them are pretty depressing. And what I mean by that is 95% of them, if you read them, if you’re looking for hope and inspiration, you’re gonna read the comments and be like, “Oh, my gosh, there’s no hope here.” For a lack of better word, “I’m screwed.” But now, put that in perspective though. Let’s just go on the low end. Let’s say there’s 2.7 million people in the US that have AFib, 2,200 comments is 0.0008 something, something percent of the AFib population that is leaving comments. So, you’re getting just a micellar, just a miniscule amount of the people that have AFib that are taking the time to leave comments. And even if you go to some of the more popular forums out there that have much more than 2,200 comments, it still probably makes up 1% of the AFib population. And that’s if we have 2.7 million people with AFIB, and the number could be as high as 6.1 million people that have AFib, which brings the percentage down even lower.
So the point I’m trying to make here is that a very, very, very, very tiny fraction of the AFib population is spending time in forums and communities, and leaving comments in blogs. And then if you take that tiny, tiny, tiny population, it’s mostly all negative comments, or depressing stories, or whatever. Again, ’cause these are people that are desperate for help. So, just please keep this in mind when you spend time in these places because… It’s very depressing for me when I read the comments that come through my blog. I get some really sad stories and it just breaks my heart to listen to the struggles that people have, and it just really brings me down ’cause I feel so bad for these people. But then it also starts playing on my own psyche ’cause I start thinking, “Man, I’m doing great right now. I had a successful ablation. Life is fabulous for me. I’m not on any drugs. But could I end up like this person five years from now, or 10 years from now?”
And I start thinking that way and it just really brings me down, and a lot of times I have to take a step away from my blog. Every week I spend probably two days where I just don’t even touch my site. I don’t look at the comments. I don’t deal with emails. I have to just take a break, ’cause it gets me down. And I’m doing really well. So I couldn’t imagine, if I was suffering from AFib right now and I was going through some real difficult times with AFib, and then I was reading these comments, I would probably wanna jump off a bridge, to be honest. So just limit your exposure to these communities and take what you read with a grain of salt.
Best A-Fib Forums, Blogs, and Websites
So, with that, here are the resources that I recommend. The first resource I recommend is a forum afibbers.org. This is run by Shannon Dickson, who’s a very good friend of mine. And Shannon had AFib himself for 15 years. He was successfully cured of his AFib after two ablations, and has been AFib-free now, I think he’s going on eight years, and he is not on any medications. But he’s the editor and owner of this forum. This is the oldest AFib resource and/or forum online. It’s been online for… I think they’re in their 19th year, or they will be in their 19th year here in 2018. But there’s a lot of veteran AFibbers in that forum. And Shannon himself, being a veteran of AFib, he’s obviously in there quite a bit as well. Fantastic resource. I cannot recommend it enough, especially if you wanna get down into the nuts and bolts of things that you can do to help your AFib, ’cause they talk a lot about natural things you can do. But it is also very favorable to ablations, ’cause a lot of the people in there have been successfully treated having ablations. So just keep that in mind, there is a little bit of a bias towards ablations in that forum. But there’s also a ton of information on lifestyle changes that you can make to manage your AFib better. So that would be the first resource I recommend, again, afibbers.org.
All right. The next resource is by Mellanie True Hills and her organization stopafib.org and the American Heart Association. Those two entities partnered together to launch the My AFib Experience community, and that website is myafibexperience.org, and that is a treasure trove of information. They have a very, very active community, and lots of information and resources. It’s extremely popular website, so I would recommend that resource.
Another resource I recommend is, again, Mellanie True Hills of stopafib.org. She has her own discussion forum, and that is at forum.stopafib.org. I will provide links, by the way, to all of these websites in the show notes. And if you just go to my website, you’ll see the blog post where I embed my podcast and my videocast, and in there I will have links to all of these resources.
Again, forum.stopafib.org. Mellanie True Hills, by the way, she suffered greatly from AFib and had a horrible time on the blood thinners that they were giving her at the time, which was Coumadin or warfarin. She searched high and low and found her cure, which was a Cox-Maze, or a mini-maze, I can’t remember which one she did. But she was successfully cured and she hasn’t had AFib, nor has she been on any medications for, I think, about 12, maybe 15 years now. It’s been well over a decade that she’s been free of her AFib. But she started stopafib.org, and then she launched the forum, and then again later down the road, just recently in the last couple years, launched that My AFib Experience website with the American Heart Association. Her forum is very popular, very active as well, so I’d recommend that one.
This other resource I am not familiar with, so I cannot vouch for it. I just know it’s popular because I see it’s very active, and when you do searches for different things on AFib, this particular forum, or posts from this forum, come up quite a bit, and that is patient.info. Well, the string to get to the forum is actually quite longer, it’s patient.info/forum/discuss/browse… I’m not even gonna bother you with the full URL there, but just look for the link in the show notes. But they’ve got a very active forum about AFib.
The next one is actually a Facebook group. This one is called AtrialFibrillationSupportForum, all one word, so facebook.com/groups/atrialfibrillationsupportforum. This is a very popular, very active Facebook support group. They have over 8,300 members at the time of this recording. So, if you’re a Facebook fan, I would definitely check out that group.
Now, I’m gonna switch focus here a little bit to websites. This one is by Steve Ryan. He had AFib many years ago, and he had a successful ablation and has been cured of his AFib now for… I wanna say he’s going on 12 or 13 years as well, well over a decade, and might even be… He might even be up to 15 years now, I can’t remember. But he hasn’t been on any drugs. Had the one procedure and he was cured, and his resource, a-fib.com, a-fib.com. His website, chockful of information on AFib. He also has a volunteer support group. You can join that and get connected with other AFibbers, if you want some one-on-one personal support. He’s got a prayer group, a prayer support group. He also provides some coaching, and he also sells his book there, “Beat Your A-Fib,” which is probably the best-selling AFib book out there, but his website, tons of information. And his content is very, very useful and very informative, so I’d definitely check that one out.
Another one is afib.newlifeoutlook.com, afib.newlifeoutlook.com. This is more of a… I don’t know how to describe it, but it’s almost like the USA Today for AFibbers. It’s quick hit articles and information on AFib. The information isn’t too terribly in depth, nor is it too terribly technical. It’s high-level general information, but all kinds of information though, don’t get me wrong. It’s good stuff. It’s just… Like I said, I don’t why, just I think of the USA Today for AFibbers is the best way to describe it, but lots of information. Then they also have a corresponding Facebook page, facebook.com/newlifeoutlook.afib. That page has over 44,000 likes. It is very popular. In fact, it’s the most popular AFib Facebook page at the time of this recording. So check that out.
And the final resources I’m gonna recommend are by Dr. Sanjay Gupta. This is not the US-based Dr. Sanjay Gupta. This is the cardiologist in York, England. He has the same exact name as Dr. Sanjay Gupta, the famous US doctor that you see on CNN and stuff, but a different doctor, totally different doctor. Again, he’s a cardiologist in York, but he does a number of videos on not just AFib, but PVCs and PACs, and just general cardiac arrhythmias. And his videos are absolutely phenomenal. He is producing, without question, the best content on AFib and just arrhythmias in general, like PVCs and PACs, ectopy and palpitations, and those types of things. The best content, the stuff that he is putting out is just unbelievable.
He also does Facebook live sessions, but his website is yorkcardiology.co.uk. And when you go to that site, he’s got his blog there, and you can also contact him and have a consultation with him. You can do it through a webcam, or through a telephone. He does virtual consultations, so you can talk to him directly. His Facebook page is facebook.com/york.cardiology. His Facebook page is very active. He has a lot of avid fans, and he pumps out a lot of content through there. But his treasure trove of information is on his YouTube channel. He’s turned in to be somewhat of a YouTube sensation in terms of the cardiology industry. In fact, he’s really the only one right now doing this in the cardiology space. But again, he focuses mostly on AFib, PVCs, PACs, palpitations, cardiac issues. But his channel is youtube.com/yorkcardiology and he is pumping out, like I said, some of the best content on the internet right now on these topics. I can’t recommend his website, his resources enough.
So those are the main resources that I would recommend, those are the ones that I actually frequent and stick my head in from time to time. Those are the ones I would definitely check out.
So, Phil, as always, that’s my very long-winded question to your answer. [chuckle] I wanted to make this video brief, but I failed on that end again. It’s just when I do these things, there’s so much information that I wanna get across. Forgive me for going so long.
If you have a question for me though and you’d like me to answer, just contact me through my website. And everybody that sends me an email gets a direct reply from me, a personal reply. So even if I don’t feature your question on these Q&A sessions, you’ll still get a detailed reply from me. Contact me, let me know what’s on your mind, I’ll do whatever I can to help you out. There you go. Thanks for listening, and have a great day.
Recap again of the best a-fib forums, blogs, and websites mentioned include:
Afibbers.org – the oldest a-fib forum and resource online (going on their 19th year)
My Afib Experience – a relatively new forum from American Heart Association and StopAfib.org
StopAfib.org Forum – a private forum from StopAfib.org
Patient.info – an active forum for people with atrial fibrillation
Atrial Fibrillation Support Forum – a Facebook support group (need to be logged into Facebook to view the page)
A-fib.com – Steve Ryan’s website that is full of information for afibbers
New Life Outlook – a website dedicated to people with afib
New Life Outlook Facebook Page – the most popular afib Facebook page today
YorkCardiology.co.uk – Dr. Sanjay Gupta’s website dedicated to afibbers and people with various heart conditions (a York cardiologist)
York Cardiology Facebook Page – Dr. Sanjay Gupta’s popular Facebook page
York Cardiology YouTube Channel – the BEST resource on YouTube for afibbers and people with heart conditions
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Thanks, Travis, for including A-Fib.com in your article.
Our A-Fib Support Volunteers offer one-to-one support and hope through exchanging emails and sharing their stories (some volunteers are now A-Fib-free, others are managing their A-Fib). Having someone you can turn to for advice, emotional support, and a sense of hope that you can be cured, may bring you peace of mind.
You can read all about our volunteers at: http://a-fib.com/a-fib-support-volunteers/.
We have volunteers from all around the world. Help is just an email away.
Hey Patti! I hope all is well with you and Steve. Have a Merry Christmas and a Happy New Year!
All is well with us. Steve is traveling next month to the 23rd International AF Symposium 2018 in Orlando, FL. The three day Symposium brings together the world’s leading medical scientists to share the most recent advances in the field of atrial fibrillation. Look for Steve’s summary reports on A-Fib.com starting in late January 2018.
Wishing you good heart health,
That’s great. I can’t wait to read his reports! Have a Happy New Year!
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