Why are we doing this project? The ultimate goal of this study is to understand what are the current experiences of health care transitions for both ‘providers of health care’ and ‘individuals with intersex variation’. With this knowledge we hope to better understand how to develop timely, effective, and evidence-informed transition healthcare for Canadians with intersex, throughout their lives.
We will post the participant information here as well as a registration link to for anyone interested in joining our stakeholder meeting in Fall 2019 in BC and March in ON 2020.
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.
Our aim was to develop a short animation about periods – have a look and share https://cahcanada.ca/
CORD is Canada’s national network for organizations representing all those with rare disorders. We attended the meeting in May 2019 in Canada, and shared our poster – we were surprised to learn that CAH was new to many people!
We are delighted to share our final version of our CAH infographic. This graphic has been designed based talking with women with CAH and uses what they shared and what was in the current literature (medical, hospital based, and social) as well as on websites from around the world.
We have drawn this information together and presented as Be ABLE to ask. While this has a gendered focus to women – the approaches are open to be used with boys and men as well as others with health conditions.
This was the first part of our work in this area, we are now working on looking at transitions in health . The ultimate goal of this study is to understand how we can develop timely, effective, and evidence-informed support for Canadians with intersex variations throughout the life-cycle. If you are interested in talking about your healthcare experiences, please contact join us in October 2019 in Vancouver (we can cover travel costs) and hopefully Ontario in early 2020.
To see times of the different engagement sessions you could attend, see our short registration form at: www.surveymonkey.com/r/transitionstudy.
You can also email us at firstname.lastname@example.org, or find us on
Facebook at www.facebook.com/LifecycleHealthcare
Welcome to my blog – its great to see you here.
My blog is a way to share information, raise questions and provide updates. Not only will it be focusing on research but it will be used to share outputs from studies, interesting information, as well as stories of how people enjoy aspects of everyday life.
Getting the balance between work-life and home-life can be a challenge, so not only will I be exploring health issues important to children, young people and families, but I will be taking the time to discover and share the beauty of the Canadian scenery with the companionship of my faithful black labradors.