Zeborah Dazzle, PT here spokes-zebra for Good Health Physical Therapy and Wellness.
June is Pride month in the US. Happy Pride month!
One of the puzzles of working with a special focus on hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos (hEDS) syndrome is the number of patients who come for care who are gay, lesbian, transgender, bi, queer and/or non-binary – a higher percentage of our patient population than most experienced clinicians have seen in other clinical settings. While we feel lucky and privileged to be serving so many amazing, strong, gentle people, as clinical scientists, we do puzzle about whether there is a physiologic relationship between HSD/hEDS and identifying as LGBTQ.
We will tell you up front that there is as yet no answer to this and almost no literature overall looking at it. No literature was found on EDS and diversity of sexuality. What literature we have found looks at the prevalence of EDS among patients who have what is called in the medical world “gender dysphoria.” Gender dysphoria is the medical term used for individuals who experience incongruence, or mismatch, between the sex they were assigned at birth and their gender identity. During this month, we thought it might be a service to look at what is out there, and specifically three recent journal articles.
The first article {1} comes out of Oregon Health Sciences University from the plastic and general surgery department. The study looks at 1363 patients who came for gender reassignment surgery between 2016 and 2020. They looked at two things: how common EDS was in that group of patients and how those patients healed after their surgery. (Since EDS is a connective tissue disorder, the study authors wanted to know if there were healing problems.)
Out of the 1363 patients, 36 had a diagnosis of Ehlers-Danlos syndrome (EDS). Looking at this number and comparing it to the different estimates of how often EDS occurs in the general population, the study authors concluded:
Our investigation revealed the prevalence of Ehlers-Danlos syndrome in patients seeking gender-affirming surgery at our institution to be 132 times the highest reported prevalence in the general population. (pg. 5)
This is pretty astounding. And the study left us with a question. Reading this paper closely, they only looked for EDS as a diagnosis. They did not look at HSD. This makes us wonder how much higher the number of patients and the prevalence would have been if they had looked at all patients on the hypermobility spectrum.
Oh, by the way, they did not find any difference in surgical complications when matched against a control group of their patients who did not have EDS. So, it does not appear that individuals with hypermobility who seek gender affirming surgery are at higher risk of complications than non-hypermobile patients.
The second article {2} comes from Kansas City, Missouri. The authors looked at 166 adolescent patients seen in a multi-disciplinary EDS clinic between January 2020 and May of 2022. Specifically, they looked at how many of these patients were experiencing gender dysphoria based on their self-reports. This study did include both hEDS and HSD in their definition of an EDS patient. They identified 28 patients out of the 166 which is 17%. Since the high-end estimate of adolescents with gender dysphoria in the general population is 1.3% {2, pg. 2} this means the prevalence of gender dysphoria in this EDS population was 13 times higher than the general population.
This study also looked at a number of interesting characteristics of this group of 28 patients:
| 89% were assigned female at birth, 12% male, with gender identity as follows: > Cisgender 4% T > Transgender 61% > Nonbinary 14% > Gender Fluid 11% > Agender 7% > Unsure 3% Reported pronouns: > He/Him 47% > She/Her 14% > They/ Them 39% The most common health problems for the 28 patients were: > Joint pain 79% / Muscle pain 36% > Mast Cell Activation Disorder 21% > Anxiety 75% > Attention deficit hyperactivity disorder (ADHD) 21% > PTSD 18% > Dysautonomia 61% / Postural Orthostatic Tachycardia Syndrome (POTS) 29% > GI/ Digestive Issues 68% > Headaches 75% |
The third study {3} we looked at for this blog post came out of Children’s Hospital of Philadelphia which some who read this will recognize as one of the leading places in the country for the treatment of dysautonomia and POTS. This was a case series, meaning a journal article looking at three different cases they treated. All three of the cases were transgender men. All three patients had POTS. (If you are not familiar with POTS, please see the blog series on dysautonomia and POTS posted earlier this year). All three patients transitioned with the assistance of testosterone hormone therapy and all three had some relief of their POTS symptoms with introduction of the hormone therapy.
So, as the study authors point out, while the patients did have some decreased symptoms with the introduction of testosterone, this does not mean that testosterone should be tried for POTS. It does however lead to a recommendation that for transgender patients with POTS undergoing gender affirming therapy with hormonal treatments, further study is merited to see if and how their symptoms are affected. Why might this be important? In the Kansas study {2}, the majority of gender dysphoric hypermobile patients were transgender and almost a third had POTS.
So, if you are still reading after all these nerdy facts and figures, what are we to conclude?
We think this confirms a suspicion that we have had. While certainly not all gender diverse patients have HSD/hEDS the incidence is much higher than in the general population, and we can say too that the available literature suggests that the incidence of gender dysphoria among patients with HSD/hEDS is higher than the general population as well. Is there any hint in the literature as to why this might be? None at all that we have found so far. It is a puzzle.
We do believe though that there is an important takeaway from this information. Increased awareness within the LGTBQ+ community of hypermobility spectrum disorders and the related health problems could help many make sense of seemingly mysterious, often chronic, health concerns and pains. When in doubt, screening for hypermobility by a physician or physical therapist might be of great benefit.
Thanks for reading! In future posts we hope to look more deeply at Mast Cell Activation Disorder as well as other topics.
Cheers,
Zebbie
Zeborah Dazzle, PT, WWF
Thanks to Dr. Mark Melecki, PT, DPT for his assistance in preparing this post. You know, it’s hard to type when you have hooves and not fingers. You rock Mark!
References:
- Najafian, A., et. al., Ehlers-Danlos syndrome: prevalence and outcomes in gender affirming surgery – a single institution experience. Plast Aesthet Res 2022; 9:35; DOI: 10.20517/2347-9264.2021.89
- Jones, J.T., et.al, Gender Dysphoria in Adolescents with Ehlers-Danlos Syndrome. SAGE Open Medicine 10:1-6; DOI: 10.1177/20503121221146074
- Boris, J.R., et. al., Clinical Course of Transgender Adolescents with Complicated Postural Orthostatic Tachycardia Syndrome Undergoing Hormonal Therapy in Gender Transition: A Case Series. Transgender Health 4: (2019) DOI: 10.1089/trgh.2019.0041
