MRKH Life started in a consultation room, when Lilly told her doctors that she was looking for a community of people with MRKH (Mayer–Rokitansky–Küster–Hauser) syndrome but could not find one. Dr. Kirsten and Dr. Madda were seeing many teens with MRKH, who often had the same or similar questions.
We wanted to answer these questions publicly and help people with MRKH find each other, so we started a social media page called @mrkh_life to collect and share personal stories about living with MRKH, as well as to raise awareness by sharing reliable medical information. All of the information was provided in response to actual questions we were asked during consultations. Over time, MRKH Life also became a space where people could connect, learn, and see that they were part of a community.
MRKH-Life
This book brings together the information and testimonies gathered throughout the online project (texts have been translated into English when necessary and edited slightly for clarity).
It is meant, first and foremost, for those who live with MRKH and have been recently diagnosed. We hope that reading people’s lived experiences and finding clear medical information all in one place will help you feel less alone and more confident about living your MRKH Life.
This book is also for family, friends, partners, and healthcare professionals who wish to learn more about MRKH and how to best support people living with it.