Vaccine injury more common in people with Ehlers-Danlos Syndrome (EDS)?

Champion Forum
1

Wondering what others are seeing with vaccine injuries being more common in people with EDS? Thinking just the hypermobile type (hEDS) – the others are so rare that I think it’s hard to see a signal there.

Lots of the vaccine injured that I’ve met, when asked questions about hypermobility and other EDS symptoms respond with answers that make me think they likely are on the EDS spectrum.

This first came up for me in late 2021 when I was invited to a zoom meeting of severe vaccine injured to answer questions about MCAS and provide them with some resources. I’m not a physician, just a mom with a young adult daughter who has severe MCAS, EDS & POTS, so living with it in our house every day. Another mom (@Jojo in this group) has 2 young adult daughters with the same conditions was there as well. The group had about 20 severely vaccine injured and as we were chatting with them on zoom about MCAS, we noticed in their movements that many of them had some characteristic EDS ‘look’ to their movements which seemed odd since the only thing they had in common was severe Covid vax injuries.

@Jojo and I asked them to do a quick Beighton scale assessment which is a common screen to determine if someone might have hEDS. Shockingly 75% of those vaccine injured scored high on the Beighton scale.

Since then, when talking to vaccine injured I usually ask if they also have EDS. Many do. Some who hadn’t heard of EDS, when I ask more questions about their health before the vax, hypermobility, etc it turns out that they may have EDS.

2

Fascinating observations. You and JoJo are really cued in to this syndrome and all it’s manifestations. I hope you get a good response to your query. Seems really worthy of study. Now off to check out the Beighton Scale and test myself!

3

Here is the Ehlers-Danlos Society page on assessment including the Beighton-Scale:

I find that the one labeled ‘Spine’ is the least likely to be positive. Often EDSers have very tight hamstrings which prevent them from being positive on that one.

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I got a 2. Left pinky and spine. Have always done a lot of hamstring stretching for running so can easily flat palm the floor without bending knees. That left pinky was a surprise though!

5

A Midwestern Doctor just put out a substack linking joint hypermobility with vaccine injury. Just starting to dive into the article. Thrilled to have a doctor writing about this!

6

Coffee with butter is such a great idea. I just do it black, which is fine, and still helps hold off the hunger noise. But + butter is brilliant.

And I 2nd the slowly shrinking your windows. Start with the widest “eat” window, then slowly narrow it down as you observe and adjust your behavior over time.