High Prevalence of Transgender and Non-Binary Individuals in the EDS Community

The prevalence of transgender and non-binary individuals in the Ehlers-Danlos Syndrome (EDS) population is significantly higher than in the general population. Research indicates that up to 17% of people with EDS identify as transgender or gender diverse, compared to about 1.3% in the general U.S. population. This trend underscores the need for more affirming healthcare, given the challenges transgender and gender-diverse individuals face, such as misdiagnosis, medical gaslighting, and difficulties accessing gender-affirming care.

Gender Diversity and EDS

EDS is a group of inherited disorders affecting connective tissues, including the skin, joints, and blood vessels. This leads to symptoms like joint hypermobility, chronic pain, and frequent delays in diagnosis due to overlap with other conditions like dysautonomia, fibromyalgia, and chronic fatigue. For transgender and gender-diverse individuals with EDS, navigating the healthcare system is even more complex, as it often lacks understanding of both EDS and gender diversity. Many report medical trauma or gaslighting, where their symptoms are dismissed or misattributed to psychological factors.

High Prevalence of Transgender and Non-Binary Individuals in EDS

Research has revealed that transgender and gender-diverse individuals are overrepresented in the EDS community. A study from a U.S. EDS clinic showed that 17% of adolescents identified as transgender or gender diverse, compared to the general population estimate of 1.3%. Among those identifying as transgender or gender diverse, 61% identified as transgender, 14% as nonbinary, with smaller percentages identifying as gender-fluid or agender. Most of these individuals were assigned female at birth and were primarily diagnosed with hypermobile EDS (hEDS), which is characterized by joint hypermobility, chronic pain, and fatigue.

Despite the high prevalence of transgender and gender-diverse individuals in the EDS community, only a small number have been evaluated by gender specialists, which points to a gap in the healthcare system. This association between gender diversity and EDS is not yet fully understood, but it is believed that biological, psychological, and social factors may play a role. Some theories suggest a possible link between connective tissue differences and hormonal pathways, while others propose that the stress of living with a chronic illness might contribute to heightened self-awareness of gender identity.

Treatment Considerations: Hormonal Influence on POTS, MCAS, and EDS

Though research is limited, some studies suggest that testosterone therapy used in gender-affirming treatments for transgender men might provide additional benefits for managing Postural Orthostatic Tachycardia Syndrome (POTS), a common comorbidity in individuals with EDS. While testosterone is not typically prescribed specifically to treat POTS, individuals undergoing testosterone therapy have reported improvements in symptoms such as dizziness, fatigue, and cognitive dysfunction. This could be an important consideration for transgender men already contemplating hormone therapy as part of their transition.

Hormonal fluctuations, such as those related to estrogen and testosterone, are believed to influence the severity of POTS, EDS, and Mast Cell Activation Syndrome (MCAS). Understanding how hormone therapy affects these conditions could improve treatment strategies. This is particularly important as conditions like premenstrual dysphoric disorder (PMDD) are increasingly being linked to hormonal imbalances in individuals with EDS and MCAS.

Improving Care for Transgender and Gender-Diverse Individuals with EDS

Given the unique challenges faced by transgender and gender-diverse individuals with EDS, there is a growing recognition of the need for gender-affirming care in multidisciplinary EDS clinics. Healthcare providers are encouraged to proactively ask about gender identity and create supportive, affirming environments that respect patients' pronouns and identities. These efforts can help reduce stigma and barriers to care, which are common for many transgender and gender-diverse individuals. More research is needed to understand why transgender and non-binary individuals are so prevalent in the EDS population, but in the meantime, creating inclusive healthcare environments is essential.

Conclusion

The higher-than-expected prevalence of transgender and non-binary individuals in the EDS community highlights the need for more inclusive, gender-affirming healthcare approaches. Addressing the physical and mental health needs of transgender and gender-diverse individuals with EDS, while mitigating the medical trauma often associated with their care, is critical. By fostering multidisciplinary, affirming care environments, healthcare providers can better serve this population and improve both physical and mental health outcomes.

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References:

1. Najafian, A., Cylinder, I., et al. "Ehlers-Danlos syndrome: prevalence and outcomes in gender-affirming surgery." https://ohsu.elsevierpure.com/en/publications/ehlers-danlos-syndrome-prevalence-and-outcomes-in-gender-affirmin
2. Wexler, M. "High Rate of Transgender, Gender Diverse Identities at EDS Clinic | Ehlers-Danlos News."
3. Boris et al., "Clinical Course of Transgender Adolescents with Complicated Postural Orthostatic Tachycardia Syndrome Undergoing Hormonal Therapy," Transgender Health, 2019. https://pubmed.ncbi.nlm.nih.gov/31754630/
4. Jones, Jordan T., et al. "Gender Dysphoria in Adolescents with Ehlers-Danlos Syndrome." SAGE Open Medicine, vol. 10, 25 Dec. 2022, doi:10.1177/20503121221146074.
5. Queer CME. "The Intersection of Chronic Health and Trans Healthcare." Queer CME, August 23, 2023. https://www.queercme.com/blog/intersection-of-chronic-health-and-trans-healthcare.
6. Trans Journalists Association’s Stylebook and Coverage Guide, 2023. https://styleguide.transjournalists.org/

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