Jun 29, 2026 · 35 min · 6 segments
Today's episode we are chatting with the Ehlers Danlos Society's senior global alliance coordinator Sarah Hamilton. Listen as we learn about the ins and outs of hypermobility disorders, how they…
Ashley FisherHost
Shawn BigbyHost
Today, we have with us Sarah Hamilton, who is the Senior Global Alliance Coordinator of the Ehlers-Danlos Society, and we're super excited to chat with her.
So can you start off, because what I just said in the intro might potentially be new news to our audience.
They may be going, "I didn't know that Ehlers-Danlos was a comorbidity of lipedema," or they could be saying, "What is Ehlers-Danlos?"
So Ehlers-Danlos syndromes are a group of connective tissue disorders, so they affect the connective tissue within the body.
Um, one of those types we don't know the gene for, so it's done on a clinical diagnosis, and the others we're able to test genetically for those types.
And then there's also hypermobility spectrum disorder or disorders, and that's a collection again of conditions that affect the joints more than anything.
So one of the big kind of overriding things with these conditions is hypermobility, and hypermobility is something in itself not necessarily a problem.
We look at ballet dancers, we look at gymnasts, they're obviously super flexible and it's doing them really well.
But when it becomes a problem is when the joint is so hypermobile that it is coming out of place, when it is causing pain, it's causing instability, and it's affecting life.
And then when we look at the Ehlers-Danlos syndromes and especially looking at what, what we call the monogenic types, so that's the types that can be diagnosed with genetic testing, we see additional issues.
To make it even more complicated, it does also affect the types that we cannot genetically diagnose, that we need to do the clinical diagnosis for.
Today, we have with us Sarah Hamilton, who is the Senior Global Alliance Coordinator of the Ehlers-Danlos Society, and we're super excited to chat with her.
So can you start off, because what I just said in the intro might potentially be new news to our audience.
They may be going, "I didn't know that Ehlers-Danlos was a comorbidity of lipedema," or they could be saying, "What is Ehlers-Danlos?"
So Ehlers-Danlos syndromes are a group of connective tissue disorders, so they affect the connective tissue within the body.
Um, one of those types we don't know the gene for, so it's done on a clinical diagnosis, and the others we're able to test genetically for those types.
And then there's also hypermobility spectrum disorder or disorders, and that's a collection again of conditions that affect the joints more than anything.
So one of the big kind of overriding things with these conditions is hypermobility, and hypermobility is something in itself not necessarily a problem.
We look at ballet dancers, we look at gymnasts, they're obviously super flexible and it's doing them really well.
But when it becomes a problem is when the joint is so hypermobile that it is coming out of place, when it is causing pain, it's causing instability, and it's affecting life.
And then when we look at the Ehlers-Danlos syndromes and especially looking at what, what we call the monogenic types, so that's the types that can be diagnosed with genetic testing, we see additional issues.
To make it even more complicated, it does also affect the types that we cannot genetically diagnose, that we need to do the clinical diagnosis for.
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