Following early analysis of data from the Women Health Research Institute (WHRI) grant focusing on wellness in women with congenital adrenal hyperplasia (CAH), it was obvious that there was a need to share, translate, and mobilize knowledge into public and professional domains. Early findings show that menstrual wellness for women with CAH is constrained by the ongoing menstrual taboos, similar for all women. An additional stress factor for women with CAH is the variation in genital anatomy, cycle duration, and the impact of metabolic processes and steroid medication management.
Taboo and limited menstrual information and resources for parents of younger children, patients and health care providers result in knowledge gaps; this limits early and ongoing body wellness conversations. Introducing health concepts linked to menstrual wellness early on can help to reduce stigma and isolation, which builds resilience to support physical health and protect mental wellbeing.
The aim is to build on HealthLinkBC’s “standard” menstrual cycle information by designing a simple, interactive (info)graphic that will lay out the important factors of concern to women with CAH. It is hoped that women will use this KT product when discussing their menstrual (ir)regularities with health care providers (e.g. in specialist and primary care settings). To strengthen product credibility, this interactive (info)graphic will be presented at a WHRI workshop to CAH stakeholders (e.g. women with CAH, parents, health care providers, educators, and advocates); feedback on design, functionality, and content will be incorporated.
This KT work will be launched with provincial events linked to Women’s Day and Rare Disorder Day 2019. In addition, this KT resource will be made freely available via domestic (e.g. Canadian Organization of Rare Disorders (CORD)) and international advocacy and support groups (e.g. dsdfamilies, living with CAH etc.).