Is Ehlers–Danlos Syndrome Really Associated With Gender Dysphoria?

A couple years ago, I got an email from someone who felt that I was failing in my exploration of the science by not writing about how Ehlers-Danlos Syndrome causes one to be transgender. I was confused. I had never seen any paper to suggest such a connection. Plus, something about the way this correspondent wrote about it set off several red flags of someone seeking confirmation and affirmation, not information.

Now there is a paper that purports to provide evidence of a connection. But how and why this should be so opens up more questions than answers as I will explain.

First, one must understand that Ehlers-Danlos is one of those syndromes that is both rare and not easy to diagnose. It has been associated with several genetic variants that deal with connective tissue development. The syndrome is defined as causing very loose, “mobile” joints. Something most people call “double jointed”. It’s also said to cause “stretchy” “smooth” skin. Doesn’t sound very bad until one learns that this hypermobility is associated with disabling, even crippling, dislocations of hip and other joints.

But why should a connective tissue problem cause gender dysphoria?

In Jones, et al, he reports that among his TEENAGED patients, 17% reported gender dysphoria. Had this been published in the 1970s, I would have been astounded and would be strongly urging further research into the connection. But this was published in December of 2022. This suggests a far simpler explanation: teenagers falsely claiming to be “trans” and “non-binary”.

We already know that in some other studies up to 10% of teenagers making such a claim. Add to that number the idea of being diagnosed with a rare genetic variant and a social network of teens with said variant, all feeling “special” and told that there is an association with being “trans”, we get a perfect storm for a classic fad. A super majority of 89% of these patients claiming to be “trans” and “non-binary” were female, which fits the recent trend of “tucutes”.

But the ultimate suspicious hint that this is a social imitation phenomena among teens is this statement from the researchers, “To date, there have been no reports of prevalence of TGD youth in pediatric patients with EDS.”

But now we need to look at other data, from the other direction. We must never be blinded by confirmation bias or cherry picking. What of those who are adults receiving medical transition services? Here we find another paper, published in 2022, that reported that of over a thousand patients being treated for gender dysphoria, 2.6% had a diagnoses of Ehlers-Danlos Syndrome, which is ~136 times more than is found in the general population. Further, 67% of them were female.

So we are left with a conundrum. How is it that a connective tissue syndrome is associated with gender dysphoria?

References:

Jones JT, Black WR, Moser CN, Rush ET, Malloy Walton L. Gender dysphoria in adolescents with Ehlers–Danlos syndrome. SAGE Open Medicine. 2022;10. doi:10.1177/20503121221146074

Najafian, A.; Cylinder I.; Jedrzejewski B.; Sineath C.; Sikora Z.; Martin LH.; Dugi D.; Dy GW.; Berli JU. Ehlers-Danlos syndrome: prevalence and outcomes in gender affirming surgery – a single institution experience. Plast. Aesthet. Res. 2022, 9, 35. http://dx.doi.org/10.20517/2347-9264.2021.89

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