Story

MRKH (short for Mayer-Rokitansky-Kuster-Hauser Syndrome) is a congenital condition that affects around 1 in 5000 born females and is characterised by the underdevelopment of the female reproductive system. Due to the underdevelopment of the uterus, people with MRKH are unable to get pregnant, they will never be able to carry their own baby and, due to the underdevelopment of the vaginal canal, penetrative sex can be painful without treatment. The condition is most commonly diagnosed in adolescence, at around age 16/17 due to the absence of the first menstrual period so, once diagnosed, the person’s life changes forever. Being told as a teen that you can never carry a baby is devastating, and so many of the support groups out there are run by incredible people with MRKH who are a lot further along in their journey than where these teens are. Recognising this gap in our community, in 2019 Vics Lane founded MRKH Stars, a small charity to support young and newly diagnosed people with MRKH Syndrome. At only 19, Vics was juggling an undergraduate degree, her first job, and was coming to terms with the diagnosis herself, she needed some help. Therefore, a few months later, she was joined by Tk Kennedy, then 20. First as an Ambassador for the foundation, then “Second Star”, and then the Co-Director and Co-Chair of MRKH Stars, the two now run the charity together and have created an incredible bond through being on this journey together. Now both 21, the two have a global team of trustees including other people with MRKH and of supporters too, and an international team of MRKH advocates, now with over 30 people volunteering their time into the foundation. MRKH Stars strives to support young people living with MRKH, being the peer-peer support from people going through the same thing, at the same time. MRKH Stars is fundraising to be able to hold in-person support group meetings. We have run virtual webinars with sponsorship from other charities, however are looking for the opportunity to enable people to connect face to face. This requires more funding, more planning, and we hope to be able to offer these events to people travelling into the UK from abroad. Peer support on this journey should not be viewed or treated as a luxury, it is a necessity, and we hope to be able to provide an accessible support system for anyone living with MRKH who needs or wants it.