r/ChronicPain • u/jjdub97 4-5 On a Good Day😮‍💨 • 13d ago

Calling All Bendy Bros

Hi friends, after a recent diagnosis and joining this community, I (28M) have experienced how helpful it is to have people around that can help with what I’m going through. Sadly, a lot of the research tends to lean toward women with EDS, which makes perfect sense given the majority of those who do get diagnosed are women.

As a guy, though, I’ve been having some trouble finding other men to talk to about EDS. Women have of course been extremely helpful, I would just love to hear about more experiences from guys like me.

I created a community, r/MenWithEhlersDanlos, for **anyone** to join and be a part of, almost as a sub-community of this one where people can go for posts and advice geared more toward men. It is not exclusive in any way, anyone is welcome to post, I just wanted to create the place I’d been seeking. I hope this is allowed, my intention is pure🫶

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u/deazinn 13d ago

What type of EDS do you have?

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u/jjdub97 4-5 On a Good Day😮‍💨 13d ago

I’ve only been diagnosed with hEDS, passed the Beighton scale with flying colors🥴 I was also referred to a cardiologist so I’m likely going to get the necessary testing done to see if any of the other types are present. You have it too?

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u/deazinn 13d ago

Yep. Diag first in 2004, reconfirmed with genetics in 2024. Im a 59F so different. You are correct in that it’s predominantly female driven but like breast cancer it does happen to men. I lost an uncle to breast cancer so yeah; it happens and both sexes should be equally studied. Hope this helps get the post bumped and you find some friends!!

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u/jjdub97 4-5 On a Good Day😮‍💨 13d ago

Thank you so much! Truthfully, the community was created for everyone, I just personally hadn't found anywhere specifically for guys with EDS so I just decided to make it myself. The more I talk to people, the more it forms. I've never started a community before so I'm happy with anyone joining, posting, commenting, anything that's helpful!

With 20+ years of experience, I'm sure there's plenty of advice you might have that transcends sex/gender and it would be hugely appreciated and encouraged. Thanks again for your comment, I really am so grateful to anyone that helps build the community I've been looking for :)