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May is Hypermobility & Ehlers-Danlos Awareness Month!

Happy May, everyone!

May is Hypermobility Awareness Month, so I wanted to briefly describe what hypermobility is (and isn't), and to describe the wide range of presenations that can fall under the "Hypermobile" or "Ehlers Danlos" categories.

The terms get thrown around a lot, so I'll break them down for you!

Ehlers Danlos Syndromes (EDS) are collagen and connective tissue based variations that can affect any and all organs. IE, the very fibers that make up the tissues of us, have some variation from the "collagen typical" population. That means that are are a variety of syndromes in this family, because it might only impact vascular tissue, bone, and so forth. It's most often associated with joint hypermobility (beind extra bendy), and stretchy skin. Recent research also correlates it with higher rates of neurodiversity and PTSD.

Specifc Subtypes of EDS include:

  • Vascular EDS or vEDS: a subtype defined by more fragile vascular tissue, concurrent with club feet, easy bruising, thin to transluscent skin, and fragile internal organs. Read more about it here!

  • Brittle Cornea Syndrome: Caused by a specific genetic mutation, it's marked by a progressive thinning of the cornea, which can impact the vision. It's also concurrent with other tissue hypermobility and skin elasticity. Read about it here!

  • Classical EDS: This is the most common one, which folks often think of when they hear "Ehlers Danlos Syndrome." It includes the joint hypermobility, the fragile, stretchy skin, potentially pain and discomfort, and potentially even difficulty with tissue healing and scarring. You can check more out about it here

  • Hypermobile EDS (hEDS): Hypermobile EDS is slightly different, in that it seems to be more progressive, starting at younger ages, with frequent dislocations, sprains (like rolling your ankle - A LOT), muscle spasms/contractures, and pain. Over time, there may also be an increase in pain and fatigue if folks become avoidant of moving.

  • Cardio-valvular EDS: This includes the tissue extensibility, but these folks often have heart variations that require replacement or surgery by adulthood.

  • Periodontal EDS (pEDS): specific sensitivity to the teeth and gums, in addition to global mobility.

  • Myopathic EDS (mEDS): often identified early in small children, it involves contractures in the small joints that release over time.

Hypermobility Spectrum Disorders (HSD) are a group of conditions that are similar, in terms of hypermobility or presentaion, but don't meet some of the specific diagnostic criteria, or don't have positive tests on genetics testing often used to diagnose EDS. These folks have all the mobility, but don't have the genetics.

Diagnoses these days for the EDS disorders, is based upon the 2017 International Classifcation of Elhers Danlos Syndromes. This classification system isn't my favorite, but it's very evidence based, and for 13 out of the 14 EDS types, it includes genetic testing. Which is essentially saying, researchers have found a very isolated genetic variation leading to symptoms, to explain these *subtypes* of hypermobility. About 50% of folks (or more) with hypermobility won't pass this genetic testing. Does that mean they aren't hypermobile? No, it just means science doens't fully understand all of hypermobility yet. IE, if you don't the EDS genetics, you will get the HSD diagnosis instead.

What's the difference between EDS and HSD?

The biggest difference is the genetic component they can identify for the EDS spectrum disorders, based upon the 2017 guideliness. This is my issue with the guidelines, because it misses and ignores a vast group of people who have symptoms.

We don't entirely know what causes HSD.

There's some interesting research about the concurrence of hypermobility and trauma and PTSD.

A very interesting study in kiddos who survived the 2015 earthquakes in Nepal showed higher PTSD symptoms in kids who also tested higher in the hypermobility scale used at the time. Now, the study defines correlation; these two things are related, but it does not define causation. Is hypermobility a response of the body, to help deal with a traumatic experience; if so, why isn't everybody super bendy? Or are folks with hypermobility more likely to develop PTSD symptoms because their tissue literally cannot "bounce back?" It's unclear, and more research is needed to help illuminate these conditions, and to help provide better care.

I know in my work, a huge part of the process for many of my Zebras is not only the movement piece, but the empowerment piece; empowering folks to feel good, strong, and powerful in their bodies. And it's amazing to watch that ripple through their whole lives, not just their work with me. In my anecdotal experience, there is clearly a notable relationship between empowering and stabilizing the body, and empowering and stabilizing the mind.

Love on some of the zebras in your life! Feed them protein, electrolytes, and give them cuddly soft things to snuggle!

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