Ehlers-Danlos syndrome is an inherited condition that involves the connective tissue. Connective tissue provides support in tendons, ligaments, bones, skin, and blood vessels. Symptoms of Ehlers-Danlos syndrome include:
Ehlers-Danlos syndrome is relatively common in the trans community. A recent study in a multidisciplinary clinic found that 28 out of 166 adolescents with Ehlers-Danlos syndrome identified as trans or gender diverse (Jones et al., 2022).
Although Ehlers-Danlos syndrome is relatively common in the trans community, there has been relatively little research on the interaction between Ehlers-Danlos syndrome and gender affirming hormone treatment. Nonetheless, there is no evidence that gender affirming hormone treatment causes any adverse complications or harms in people with Ehlers-Danlos syndrome.
There was a recent case series of three trans adolescents, two of whom had Ehlers-Danlos syndrome, who received masculinising hormone treatment with testosterone. The case series found that masculinising hormone treatment with testosterone did not result in any complications with regard to the Ehlers-Danlos syndrome. Furthermore, masculinising hormone treatment was associated with improvements in some symptoms, specifically postural tachycardia, or palpitations on standing up (Boris et al., 2019).
To date, there is no reliable research on the interaction between Ehlers-Danlos syndrome and feminising hormone treatment. However, it has been suggested that oestrogen tends to stabilise connective tissue, whereas progesterone tends to loosen connective tissue. This is based on anecdotal reports that cis women with Ehlers-Danlos syndrome find that their symptoms tend to worsen prior to menstruation, when progesterone levels are at their highest (Bird, 2022).
While there has been little research on gender affirming hormone treatment and Ehlers-Danlos syndrome, there is more research on gender affirming surgery and Ehlers-Danlos syndrome. A recent study compared 36 people with Ehlers-Danlos syndrome who received gender affirming surgery and 108 people without Ehlers-Danlos syndrome who received gender affirming surgery. The study found that the people who had Ehlers-Danlos syndrome had similar outcomes to the people who did not have Ehlers-Danlos syndrome. Furthermore, Ehlers-Danlos syndrome was not associated with any increased risk of postoperative complications (Najafian et al., 2022).
Having Ehlers-Danlos syndrome is not a contraindication to gender affirming hormone treatment. Hence, it is usually fine to proceed with gender affirming hormone treatment if you have Ehlers-Danlos syndrome.
However, given the lack of robust research on the interaction between Ehlers-Danlos syndrome and gender affirming hormone treatment, it is advisable that you monitor your symptoms and keep your doctor informed that you are receiving gender affirming hormone treatment. This is so that any changes in your health relating to your Ehlers-Danlos syndrome can be detected and treatments can be offered if appropriate.
Bird, H. (2022). "Hormones and hypermobility". Hypermobility Syndromes Association. https://www.hypermobility.org/hormones-and-hypermobility
Boris, J. R., McClain, Z. B. R., and Bernadzikowski, T. (2019). "Clinical Course of Transgender Adolescents with Complicated Postural Orthostatic Tachycardia Syndrome Undergoing Hormonal Therapy in Gender Transition: A Case Series". Transgender Health, 4: 331–334.
Jones, J. T., Black, W. R., Moser, C. N., Rush, E. T., and Malloy Walton, L. (2022) "Gender dysphoria in adolescents with Ehlers-Danlos syndrome". SAGE Open Medicine, 10: 20503121221146074.
Najafian, A., Cylinder, I., Jedrzejewski, B., Sineath, C., Sikora, Z., Martin, L. H., Dugi, D., Dy, G. W., and Berli, J. U. (2022). "Ehlers-Danlos syndrome: prevalence and outcomes in gender affirming surgery - a single institution experience." Plastic and Aesthetic Research, 9: 35.