IS IT REALLY "JUST ANXIETY"? WHAT GENETICS TELLS US ABOUT hEDS & ANXIETY

You may have seen a new study out of the Norris Lab making waves in the floppy community. In the first large genome-wide association study of hEDS, researchers examined genetic data from 1,815 people with hEDS and 5,008 controls.

One finding caught our attention: despite anxiety being commonly reported among people with hEDS, researchers did not find a statistically significant genetic correlation between hEDS and anxiety in this analysis.

That doesn't mean anxiety isn't genetic, and it doesn't tell us exactly why anxiety is so common in the floppy community. What it does give us is another reason to ask better questions about the relationship between anxiety and the lived physiological experience of hEDS.

Because think about it. If your body was having mini dislocations all day, every day, and you didn’t know why, wouldn’t you be at least a little anxious? Honestly, we would be worried if you weren’t! And that’s not even counting the anxiety that comes from being told that “everything is normal” when deep down you know it’s not.

The takeaway isn't that anxiety has nothing to do with genetics. It's that we shouldn't assume anxiety explains the floppy body. That means we can find solutions. Early intervention, increased education, and growing awareness are all things we are building toward. At BAR, we are expanding our educational courses for healthcare providers to share what we have learned and improve access. So, tell your friends (and providers)!

In the meantime, while we continue building more access and training more providers, please consider talking to someone. New specialties are emerging in mental health, including therapists who focus on chronic illness and medical PTSD. Being floppy is not for the faint of heart. (Get it, POTS? Okay, maybe a bad joke, but you get the idea.) You deserve to feel supported, happy, and grounded in your floppy body.

We want you to know this: your symptoms are real. There are real physiological reasons for why you feel the way you do. Your experiences are not “just anxiety.”

You are not broken. You are floppy.

Want to go down the rabbit hole?

Bouatia-Naji N, Norris RA, et al. Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from Genome-Wide Association Study Meta-analysis. It is indexed in PubMed and available in full text through PubMed Central.

Read the hEDS genetics study on PubMed

Note: This study has yet to be peer reviewed at original publication. We will continue to monitor the research and reviews as it gets published.

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About the Author

Allyson Barnes, PT, DPT is the founder of BAR Therapies and BAR Institute. She is a physical therapist specializing in the evaluation and treatment of symptomatic hypermobility and related connective tissue disorders. Through The Floppy Files, Allyson translates complex research into practical, evidence-informed education that helps patients, families, and healthcare professionals better understand hypermobility and participate more fully in everyday life. Learn more about Allyson, explore more articles in The Floppy Files, or browse continuing education courses through BAR Institute.

This content is intended for educational purposes only and is not medical advice. It is not a substitute for individualized evaluation, diagnosis, or treatment. Always consult your qualified healthcare provider regarding your specific health concerns.