This study by James et al. gives an interesting perspective from lived experience of adults with congenital adrenal hyperplasia (CAH). Whilst CAH is a ‘rare disease’, the results can easily be extrapolated to other similar endocrine conditions with overlapping features.

The authors found a profound physical, psychological and psychosocial impact on male and female adults with CAH. The psychological well-being of women was negatively impacted by trauma of childhood medical examinations and lack of autonomy in treatment decisions. They found further issues of poor self-esteem, shame and negative body image impairing female social functioning. Female sexual dysfunction from genital malformation/surgery and psychosexual issues also negatively impacted intimate relationships. 

Fertility and reproductive choices were a concern to both males and females. Complex family dynamics with dependent relationships were concerning.

The article draws attention to the impact of psychology of similar conditions, in particular transitional endocrine disorders. It would be useful to all stakeholders working with these conditions. 

Read the full article in Endocrine Connections https://doi.org/10.1530/EC-26-0033