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Muscular Dystrophy and Gender Affirming Hormone Treatment

What is muscular dystrophy?

Muscular dystrophy refers to a group of inherited conditions that are associated with progressive weakening of the muscles. There are different sorts of muscular dystrophy, which include:

  • Duchenne muscular dystrophy — This usually affects people with XY chromosomes in early childhood.
  • Myotonic dystrophy — This can develop at any age and the severity is variable.
  • Becker muscular dystrophy — This usually affects people with XY chromosomes in later childhood.
  • Facioscapulohumeral muscular dystrophy — This can develop at any age and tends to progress slowly.
  • Emery-Dreifuss muscular dystrophy — This rare form of muscular dystrophy tends to develop in childhood or early adulthood.
  • Limb-girdle muscular dystrophy — This is a group of conditions that usually develop in late childhood or early adulthood.
  • Oculopharyngeal MD — This does not usually develop until a person is in late adulthood.

Different forms of muscular dystrophy progress at different rates and affect different groups of muscles. Sometimes the heart or the muscles involved in breathing can become affected, which is associated with increased mortality.

There is no cure for muscular dystrophy, but there are treatments which can manage some of the associated problems. Such treatments include mobility assistance, physiotherapy, steroids to improve muscle strength, medications to treat heart failure, and surgery to correct postural problems.

Can muscular dystrophy interact with gender affirming hormone treatment?

There is currently a paucity of research on muscular dystrophy in the transgender community. Hence, there are no studies which specifically examine the outcomes of gender affirming hormone treatment in people with muscular dystrophy.

Nonetheless, there is research on the effects of hormonal treatment in cisgender people with muscular dystrophy. A study has shown that testosterone therapy in cisgender boys with pubertal delay associated with Duchenne muscular dystrophy led to improvements in bone density, muscle strength, and general wellbeing (Wood et al., 2021). Selective oestrogen receptor modulators have also been used in people with Duchenne muscular dystrophy with no adverse effects reported (Botti et al., 2022). There is less research on oestrogen in people with muscular dystrophy, but a study in mice with the mdx mutation has suggested that oestrogen is important for muscle recovery after injury (Pang et al., 2021).

There are also this personal account of a transgender woman living with muscular dystrophy, which reports a very positive experience with gender affirming hormone treatment:

Conclusion

Having muscular dystrophy is not a contraindication to gender affirming hormone treatment. While the research on the gender affirming hormone treatment in muscular dystrophy is scarce, the available evidence has suggested no concerns about its safety. Hence, it is usually fine to proceed with gender affirming hormone treatment if you have muscular dystrophy.

However, given the lack of robust research, 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 muscular dystrophy can be detected and treatments can be offered if appropriate.

References

Botti, V., Menzel, O., and Staedler, D. (2022). “A state-of-the-art review of tamoxifen as a potential therapeutic for Duchenne muscular dystrophy”. Frontiers in Pharmacology, 13.

Dupree, M. B. T. (2023). “My Journey as a Transgender Woman with DMD – Part 1”. Family, Friends, and Duchenne, 7th April 2023. https://familyfriendsandduchenne.org/2023/04/07/my-journey-as-a-transgender-woman-with-dmd/

Dupree, M. B. T. (2023). “My Journey as a Transgender Woman with DMD – Part 2”. Family, Friends, and Duchenne, 14th April 2023. https://familyfriendsandduchenne.org/2023/04/14/part-2-my-journey-as-a-transgender-woman-with-dmd/

Dupree, M. B. T. (2023). “My Journey as a Transgender Woman with DMD – Part 3”. Family, Friends, and Duchenne, 21st April 2023. https://familyfriendsandduchenne.org/2023/04/21/my-journey-as-a-transgender-woman-with-dmd-part-3/

Pang, P., Baumann, C. W., Barok, R., Larson, A. A., Dougherty, B. J., and Lowe, D. A. (2021). “Impact of estrogen deficiency on diaphragm and leg muscle contractile function in female mdx mice”. PLoS ONE, 16 (3): e0249472.

Wood, C. L., Page, J., Foggin, J., Guglieri, M., Straub, V., and Cheetham, T. D. (2021). “The impact of testosterone therapy on quality of life in adolescents with Duchenne muscular dystrophy”. Neuromuscular Disorders, 31(12): 1259-1265.

Updated on May 23, 2024

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