The MRKH Stars Story
MRKH (short for Mayer-Rokitansky-Kuster-Hauser Syndrome) is a congenital condition that affects between 1 in 4500-5000 born females and is characterised by the underdevelopment of the uterus and vaginal canal. People with MRKH have XX (female) chromosomes, typical female external genitalia and female secondary sexual characteristics (breast growth, pubic hair etc).
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, so surgery or vaginal dilation are common options for people living with the condition who are wanting to have penetrative sex.
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 21 and 22, 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.
At MRKH Stars, there are now 5 advocates who run MRKH Stars on a day to day basis. Vics and Tk are at the helm, with Vics taking care of all the admin, and Tk managing both our Shooting Stars Buddy Scheme, and all of our merch projects. Lily and Laura are our Second Stars, both with MRKH and each with different roles. Lily is our Education Coordinator, and oversees all of the information we are sharing about MRKH as a condition, and ensuring it is all true and accurate, and Laura is our Wellbeing Coordinator, she checks in on the mental health and wellbeing of all of our team, supporters and of the community who reach out to us. Our 5th and final advocate is Mia, she does not have MRKH, but heads up all of our work surrounding friends, family and supporters of those with MRKH. Mia supports the supporters, which is a super important part of what we do here.
We also now have a team of over 50 MRKH warriors and supporters who volunteer their time at the foundation, contributing in a variety of different ways. From helping us to create merch products to providing 1:1 support to others with MRKH, each and every volunteer plays a pivotal part in keeping us going.
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. We are also looking to launch a new programme to support MRKH Advocates, this is looking to be costly for us too. We are unable to share specific details at the moment, but as soon as we can, we will. We hope to be able to secure funding to run this initiative, as advocacy is both an empowering and sometimes isolating aspect of the MRKH journey. Every penny that comes into MRKH Stars from merch sales or donations helps us to keep running the foundation, get in touch to find out how you can support us.
Get in touch with any comments, questions, or if you would like to enquire about supporting us, or receiving support for yourself or a loved one. We are here to support you.