You may have seen a new study out of the Norris Lab that’s making waves in the floppy community. This was the first large study to examine genetic markers in roughly 1,800 hEDS patients and 5,000 controls. One of the biggest findings is that there is no significant genetic correlation between hEDS and anxiety.

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What this suggests is that the high rates of anxiety seen in our floppy community are most likely not caused by genetics. Instead, anxiety is probably secondary to things like chronic pain, fatigue, and the uncertainty that comes with unexplained symptoms.

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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. 

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The good news is that anxiety is not written in floppy DNA. 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)!

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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.

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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.” 

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You are not broken. You are floppy.

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

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