u/Pashta2FAPhoneDied

Sometimes people make a separate account to be anonymous, which is understandable.

But then if you go and delete that anonymous account, it is basically the same thing as deleting the posts... They all disappear. It's against the rules here because we are still learning so much about this condition and need all the help we can get.

If you want to help your fellow zebras, PLEASE don't delete your posts, comments or anonymous accounts if you post here with them.

I'll leave this announcement up for a few days. Thank you. 🦓

Women with hEDS pain and fear of movement had worse mental health and physical function scores in a small study.

When BOTH shoulders are subluxing at the same time? I do not see how I can possibly wear two shoulder braces at once.

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Any advice, anyone?

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Hello, the automations in the app aren't working anymore. I had it setup to flag all new posts so I could approve them and it was working fine for a long time. Suddenly it isn't anymore.

Is anyone else experiencing this and where can I report this, please?

Edit: Android app, current update as of this posting

Edit 2: Here is the original bug report https://www.reddit.com/r/bugs/s/qiyktCFBLi

The Ehlers-Danlos Society is hosting a biobank research event on July 24 and July 26, 2026, in Allen, Texas, USA.

This initiative supports research into the different types of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) by collecting biological samples and health information from people with and without these conditions.

Hello fellow zebras, please take a look at Dr. Forest Tennant's conference discussing how Adhesive Arachnoiditis and Hypermobile Ehlers-Danlos Syndrome are linked.

At 10:49 (here: https://youtu.be/dsEv2Gc1Oa0?t=649&si=QJZhE23V\_SM2NZy7 ) he mentions this link very clearly, if you don't want to watch the whole thing at least check that part out.

You do *not* want to get Adhesive Arachnoiditis, but we are more prone to getting it so everyone should know about it and be aware of what can cause it. For example - Back injections and epidurals can cause it.

Adhesive Arachnoiditis is INCURABLE and EXTREMELY PAINFUL. It is even worse than hEDS alone. Having BOTH is what Dr. Tennant calls "a medical disaster."

Please subscribe to his channel to help him spread the word, he wants to do a live broadcast soon and needs 46 more subscribers at this time to do so. The man is an angel, please help him help us, thank you! 👼

Hello fellow zebras! Please submit your best pillow recommendations here and I will sticky this post so everyone has access to it permanently.

We have gotten SOOOO many questions on this all the time and some spammers trying to sell their stuff here, so this will hopefully prevent that in the future.

Here is a link discussing hEDS and pillows, as well:

https://www.eds.clinic/articles/best-pillows-for-ehlers-danlos-syndrome-hypermobility

Hey everyone, Reddit sent out a notice that they are enabling videos in comments soon. We are eligible to access it early since we aren't NSFW, so I enabled it for everyone since we do tend to share a lot of photos and videos. It sure helps to show others flexibility and things.

Just wanted to let you all know!

Edit: It only works on desktop.

Who else gets constantly changing eyeglass prescriptions and moving teeth here?

I am having serious problems lately with pain from my teeth moving and the eye doctor said the astigmatism increased a huge amount at my recent appointment. The new prescription he gave me never worked in the right eye and today my glasses from last year are perfect. It's crazy!

I'm wondering if my teeth moving are affecting my eye? It is on the same side of my face... So weird!

May is EDS and HSD Awareness Month.