Ehlers-Danlos Society

They may not be, and so, um, so that's difficult.

And that's kind of the part two to this question of where do you go? You know, m-my answer would be looking up the EDS Society and seeing where the centers of excellence are, maybe reaching out to people at the centers of excellence if you live very, very far away and asking for recommendations of physicians that may be closer in their area.

I have had that experience numerous times.

People will reach out to me and say, "I cannot come to UVA.

... 16 to 35-year-olds.

Yeah.

That's fantastic, and I want to mention, 'cause I talked to Dr., uh, Colin Sullivan about this when I interviewed her recently, and I think I also talked to her about it at the EDS Society Conference.

You know, a lot of times I'll hear from people, "Well, but the wait list at UVA is so long." And she pointed out, and/or maybe you pointed out at one point, still get on the wait list because, number one-

Resource.

There's the Ehlers-Danlos Society has a provider directory that's, you know, depending on where you live, you know, there may be more or less providers listed in it, but it's a good resource.

It's a great resource.

They have an app as well.

I've got a couple of guest authors in there.

So Lara Bloom, the CEO of the EDS Society has written the foreword and shared a bit of her personal journey.

And then I have Dr. Alan Hakeem, who probably most people, he used to be a rheumatologist here in London.

He now works for the EDS Society, but he wrote, you know, What is EDS and, you know, what's its presentation? And then I have Dr.

Leslie Rusick, who is a physical professor of physical therapy from the United States.

She wrote all about pain because obviously pain is a big factor of living with the conditions I work with.

But yeah, and you said I was one of the first accounts that you found.

And, you know, my journey, when I started talking about hypermobility and I started seeing EDS patients, it was around 2010.

So it's not like there's none.

And the EDS Society website is always like a good place to search if someone's looking like, how do I even find somebody? That website has a provider search and that's usually a pretty good place to start.

Or local Facebook groups, EDS Facebook support groups, that's usually a good place to look just who's good, who's available, who's seeing clients, who didn't move away.

You know, those are pretty up to date on those things.

But outside of that, it can be tricky.

Like it can be hard to find people that really understand this in depth because you really need to take the time and the initiative to learn it separately from what's kind of being taught in most standard PT programs and medical schools.

And like there's not a standardized way to learn this kind of information outside of the EDS society, their program for providers, which is also which I highly recommend.

to anyone who's a provider out there, yeah.

So, um, the zebra is a symbol of rare disease.

So, um, although we now know that hypermobile EDS isn't rare, it's just rarely diagnosed, um, the zebra, as you quite rightly said, is often the symbol of the EDS Society or EDS UK.

Um, you'll see it around a lot.

So it's something that patients can sort of recognize as, as something that represents them, but, um, and you know, there are no two zebras that are the same.

So they are-

Right

... um, I say they, the EDS Society is the one driving this.

Mm-hmm.

Today I'm back in the studio with my co-host, Dr. Kalin Johnson, for another segment of Unmasking Our Health, a new series in which we look beyond the neurodivergent brain and explore what it means to live in a neurodivergent body.

In this episode, we talk about what is up with hypermobility and hypermobile Ehlers-Danlos Syndrome, and why are these connective tissue conditions so prevalent among ADHD and autistic adults? We realized while recording this episode that there is a lot more to discuss about this particular topic, so consider this part one of two.

If you have a bendy body or if you experience chronic joint pain or both, or you're just curious about the connection between neurodivergence and connective tissue, I know you are gonna love this one, so buckle up, keep arms and legs inside at all times, and enjoy the ride.

We've got Kalin in the studio, and we are back with another episode of Unmasking Our Health.

So there we're not talking low-lying inflammation there.

We're talking pretty high levels there.

But not even that long ago, I was in some flares of my Hypermobile Ehlers-Danlos Syndrome, which is what we're gonna talk about today.

And my provider was like, "You know what? Let's just check your CRP again.