High Rate of Transgender, Gender Diverse Identities Seen at EDS Clinic

National estimates in US suggest about 1% of adolescents identify as TGD

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The number of adolescents with Ehlers-Danlos syndrome (EDS) who identify as transgender or gender diverse (TGD) was much higher than would be expected given national averages, a new analysis of data from a U.S. specialty clinic shows.

“The cause of the association between TGD and EDS is unclear, but these findings indicate the need for increased awareness of TGD and gender-nonconforming comorbid presentations in pediatric patients with EDS,” the researchers wrote in the study, “Gender dysphoria in adolescents with Ehlers–Danlos syndrome,” which was published in SAGE Open Medicine.

Gender is a complicated social construct that affects how people dress, act, and treat each other. In recent years, there has been a visible increase in the cultural acceptance of people who are TGD, a broad term that encompasses anyone who falls outside the traditional western binary of male and female assigned at birth based on the appearance of external genitalia.

National estimates in the U.S. suggest about 1% of adolescents identify as TGD. A 2021 study showed that, among people seeking gender-affirming surgical care, EDS rates were higher than would be expected. Anecdotal reports have suggested that many EDS patients identify as TGD, but there has been minimal formal research in this area, leading a team of scientists at a U.S. EDS clinic to review medical records for 166 adolescents who were seen at their clinic between 2020 and 2022. Based on the records, 28 (17%) identified as TGD in some form.

“To our knowledge, this is the first report of TGD children and adolescents in the EDS population. … We report that 17% of the EDS population in our multidisciplinary clinic self-report as TGD, which is dramatically higher than the national average of 1.3%,” the researchers wrote.

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Among the 28 patients, 61% identified as transgender, 14% as nonbinary, 11% as fluid gender, and 7% as agender. Just under half (47%) used conventionally male pronouns (he/him), while 39% went by genderless pronouns (they/them) and the remaining 14% used traditionally female pronouns (she/her).

Three were assigned male at birth while the rest were assigned female at birth. “Most adolescents seen in the multidisciplinary EDS clinic are assigned female at birth ([more than] 90%), which likely introduces a sex bias for our EDS population,” the researchers noted.

Most (82%) of the TGD patients had hypermobile EDS, while the rest had hypermobility spectrum disorder (HSD). Symptoms such as fatigue, joint and muscle pain, easy bruising, and cardiac problems were frequent.

Just over a third (36%) were on some form of gender-affirming medication. More than half (57%) were on antidepressants, 21% were on anti-anxiety medicines, and 25% were on sleep aids. Rates of antihistamine and nonsteroidal anti-inflammatory medication use were 61% and 39%, respectively.

Although most had received care from specialists like cardiologists and psychiatrists, fewer had been evaluated by endocrine/gender specialty (18%) or gynecology (11%) specialists.

The researchers suggested this high rate may prompt specialists at other clinics to proactively ask about gender identity, noting that appropriate gender-affirming medical care can substantially improve mental health and reduce the risk of suicidality.

“As care for those with EDS is often complex and multidisciplinary, providers should take consideration to ask relevant screening questions to identify gender identity and to ensure gender-affirming healthcare environments that contribute to improved care and outcomes,” they wrote. “Multidisciplinary EDS clinics should be mindful of their own clinical screenings and practices and adopt [gender-affirming medical care] practices when possible (e.g., chosen pronoun usage, use of multiple gender labels when collecting demographic information). This may necessitate the development of clinical screening measures to identify this need in patients.”

The researchers emphasized that as hypermobile EDS was the only EDS type represented in the study, their conclusions may not be generalizable for other EDS forms. They called for more research and efforts to improve care for people with EDS who identify as TGD.