A support group's perspectiveBMJ 2005; 330 doi: https://doi.org/10.1136/bmj.38365.883843.79 (Published 10 February 2005) Cite this as: BMJ 2005;330:341
- Melissa L Cull, founder of the adrenal hyperplasia network (Melissa.firstname.lastname@example.org)1
- 1 17 Newton Road, Lichfield, Staffordshire, WS13 7EF (http://www.ahn.org.uk/)
Living with congenital adrenal hyperplasia (CAH) poses many challenges, especially for women—the issues of genital surgery, disclosure, informed consent, weight, and general wellbeing not to mention having a chronic condition that is life threatening. Not only does working as a research assistant provide insight into how the medical profession views these conditions, but also working voluntarily with support groups for CAH for many years and also having CAH myself gives me insight that few doctors or psychologists will ever see or experience.
More research is now being done into the psychological long term outcomes of women with CAH, and that is good to see.1 Although I am glad that …