Is there a Facebook forum for the get information about Ehlers Danlos?

[Molly357]

Just that really. In particular the Hypermobile type.

There are a few out there, but they are very um...... American. (Links to products, lots of talk about healthcare providers (refusing to believe that patient has EDS), etc... You are better off looking at www.ehlers-danlos.org/ On forums

If you join the Ehlers-Danlos Society they'll be able to connect you with your local support group who should have a Facebook group.

There's also Hypermobility UK Support Group and Talking HEDS groups on there. Hope that helps a bit

Sorry it's not the Ehlers-Danlos Society for your local support group, it's Ehlers Danlos Support UK

www.mindbodyeds.org.uk/

Following as my DS has EDS.

rcogp has an ehlers danlos toollkit. It is very good. (royal college of Gps)
has links to stuff.

they do tend to say we think you have this and goodbye...

GPs are supposed to manage it.

I’m on ‘EDS (Ehlers Danlos Syndrome) UK’ Facebook group, which is pretty good if Facebook groups are your thing. Can be a bit.. competitive almost at times tho, just FYI.

www.rcgp.org.uk/eds

Can be a bit.. competitive almost at times tho, just FYI

Ha! Brittle bones disease here, can be similar.

Sorry, I’m in Australia... I was trying to head you away from the American FB groups, and more towards UK ones. I have just been diagnosed at 48 years of age. Guessing my bendy, klutzy son is going to go around that mulberry bush now too. Sorry, Kiddo.... Shallow end of the gene pool. (I have passed on other genetic conditions to my other kids, too 💩💩💩)

For actual information about it, the EDS toolkit mentioned by PPs is invaluable; and the HMSA (Hypermobility Syndromes Association) produce lots of helpful information. The Ehlers-Danlos Society is the one that developed the 2017 Diagnostic Criteria.

TBH I’d not touch a FB group with several bargepoles joined together: people who make illness their entire identity & then feel compelled to play some weird version of Top Trumps; people who are hung up on every wee thing their body does; the weirdy-obsessive zebra thing thank you for ruining that childhood nickname for me; a load of misinformation; people who insist they must have hEDS & wanting to know what they “need to say to get diagnosed”; people posting photos/videos of “party tricks” (you know, the things we’re absolutely never meant to do); basically a big toxic soup that was bad when I was diagnosed just over 12 years ago & has apparently only got worse.

Hey - I have hEDS along with my children. It’s a tough going group of syndromes, I hope today has been a gentle one.
Facebook has a number of groups which I use to search conversations but rarely post. I find Inspire to be a really helpful community www.inspire.com/groups/eds-and-hsd/
Kia Kaha x

(My first time posting on mumsnet, excuse my format re links!)
Also one of the most informative groups I’m in on FB www.facebook.com/groups/OHTWISTandHSD/?ref=share
And Jan’s website for Oh Twist
ohtwist.com/

I agree with Marie above re some FB groups being not so healthy - I esp don’t like the photos/videos etc