Vics Lane, 19, from Kent, is the founder of MRKH Stars, a foundation for teen infertility.
The life altering condition Mayer-Rokitansky-Kuster-Hauser (MRKH) was originally named after the four founding doctors. This congenital condition, meaning present at birth, affects the under-development of the reproductive organs, womb, cervix and vaginal canal.
Many people diagnosed with MRKH are unable to carry a child biologically and will see medical intervention to lengthen the vaginal canal. Vics was only 17 when she discovered she was born with MRKH. “I have two fully functioning ovaries, no womb, no cervix and a shortened vaginal canal, and I also only have one kidney, but there are a number of different variations of the condition,” says Vics.
“Lots of us (myself included) sought out medical attention because of a lack of our first period – I experienced puberty like any other teen but the period never started. After lots of tests I was diagnosed with MRKH when I was 17.”
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Vics says there are many MRKH advocates out there and the community is huge – but because of the age of diagnosis, many advocates don’t want to come out of their shell until their late 20s or even 30s.
But Vics wanted to raise more awareness of the condition – so she began advocating at age 18 and, at the time, she knew only one other advocate her age.
“Being one of (what I knew of) two young advocates in the community, I had a lot of young women reach out to me and was their only form of support,” she says. “It can feel daunting to reach out to someone a lot older than you, so I decided to create a platform where those teens and newly diagnosed people can go for support, and from there MRKH Stars was born.”
Vics runs MRKH stars alongside her university studies and part-time job, alongside a friend, Tk Kennedy, who also has the condition.
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“We have a board, including MRKH women ranging from 18 to 28 years old, a team of writers who share their experiences of living with MRKH, and a buddy scheme in the pipeline whereby we set up teens with members of the Stars team, who can act like a big sister role model,” says Vics. “We run social events, too, where those with MRKH can meet each other.”
The aim of the foundation was to create a safe space and peer support network for young and newly diagnosed people with MRKH, says Vics, “and to share a diverse and inclusive range of stories”.
“Our ultimate goal is to help younger people navigate a life living with MRKH,” she says. “It’s tough, and this condition puts a real strain on mental health and also physical health too in some aspects, so we are here to be a helping hand through all of that where we can be, stressing the message that, ‘you do not have to go through this alone’.”
Find out more about MRKH Stars on the foundation’s website.