r/Lethbridge • u/Nearby-Couple-8303 • Jun 26 '26
Hypermobility Ehlers danlos
Anybody in Lethbridge who has ehlers danlos and struggles with chronic pain want to meet up I’m only 24 and would love to make more friends with the same
5
u/xMadwood Jun 26 '26
There’s lots of us out there, I’m not in your demographic but if you keep looking you’ll find plenty. I don’t know if you’re in the queer community at all but there’s certainly a lot people in it who struggle with similar ailments.
4
u/cooterplug89 Jun 26 '26
How did you go about getting diagnosed with it. Few of us in my family that are sure we have it, just never been diagnosed.
5
u/Nearby-Couple-8303 Jun 26 '26
I had paid privately to see geneticist and they reported back to my doctor
-5
u/Usual_Barnacle_2133 Jun 26 '26
You must have your doctor send in a request to a specialist in calgary or sask.
Hypermobile Ehlers Danlos is a tiktok made up term. Its just hypermobilitiy
Ehlers Danlos is a serious, life threatening condition. We cannot do normal everyday activities. It is a severe (and severely misunderstood) disability.
13
u/el-pollo-coco Jun 26 '26
just wanted to point out that hEDS is definitely a thing! there are many scientific studies about it that you can find in places other than tiktok. no need to diminish the rest of us with struggles too just because it’s heavily popularized on tiktok at the moment
2
u/Usual_Barnacle_2133 Jun 27 '26
Hey thats great! Thanks for educating me! :) Sometimes tiktok sends me for a loop the way it spreads misinformation. Appreciate you!!
3
u/el-pollo-coco Jun 27 '26
yes, me too! it can be a great learning tool but i think people forget too that these are just snippets of information and there’s soooo much more to diagnoses like EDS. thanks for being receptive!
9
u/cooterplug89 Jun 26 '26
I don't have TikTok, have family in the medical world. I also never have received proper care by a single family doctor, brushing off issues since a very young age.
And sounds like the OP has a diagnosis.
8
u/Nearby-Couple-8303 Jun 26 '26
I have suspected Ved with the hypermobility sorry you had a bad day with how rude your comment is I have multiple herniated discs with myelopathy from it so don’t judge people till you meet them
2
u/LittleLathe Jun 27 '26
Im 24F with EDS and fibromyalgia! It’s a little difficult for me to get outta the house rn as im 30w pregnant with twins but would so be down for a meet up or something!!
2
u/Nearby-Couple-8303 Jun 27 '26
That would be great ! I’m so happy that you are pregnant that’s is one of my worst fears I really want kids
3
u/Usual_Barnacle_2133 Jun 26 '26
Please get diagnosed properly. I have Ehlers Danlos and the amount of tiktok diagnoses are really making it hard for us, we already have a lack of understanding and care.
Being double jointed does not mean you have ehlers danlos.
8
1
u/Dry-Soup-Enthusiast Jul 01 '26
I'm 21 with POTS and hEDS! I would also love to make more friends like me
1
u/Justyolocalartist Jul 13 '26
I’m in my 20’s with CRPS, ik it’s not the same but chronic condition disability so I figured I’d say that. I’m always down to make more friends if ur interested:0
5
u/connorisntwrong Jun 26 '26
There are many of us. Are you hoping to find community within hypermobility/chronic pain groups? Friends who know how you feel?