KUALA LUMPUR (MALAYSIA) – It wasn’t until her 20s that Wani learned about her rare condition and that it had a name – Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) – when internal sex organs such as the womb or the vagina are either absent or underdeveloped at birth.
Twenty years later, Wani remembers how the diagnosis baffled doctors and left her unable to relate to her peers.
“As a teenager, I felt very isolated because at that moment, I knew I was different,” she said.
MRKH affects about one in 5,000 women and its causes are unknown.
Wani, who is Muslim, said cultural barriers and taboos surrounding sexual health in Malaysia often leave women with MRKH feeling ashamed or unwilling to seek support or treatment.
For years, she kept her condition a secret even as she embarked on a career as a singer, poet, author and scriptwriter.
But after joining a U.S.-based online support group for MRKH women, Wani felt compelled to reach others closer to home.
“I thought if I could feel this way with a person who was basically across the globe, just imagine how I would feel if I could find an MRKH person in my own country, who would be more relatable in terms of upbringing, background and culture,” she said.
As International Women’s Day approaches, Wani said she hoped she could help women – and society – reshape motherhood.
In 2014, Wani went public with her condition and soon after, she founded a Malaysian support group that has grown to over 200 members, including from neighbouring Indonesia and Singapore.
She has also acted in and consulted on “Rahimah Tanpa Rahim” (“Rahimah Without A Womb”), a television series whose lead character has MRKH, which aired in January.
Doctors have credited Wani’s advocacy with increasing awareness of MRKH and other sexual health matters.
“Because of her … many more girls have the courage to come up and talk and get diagnosed,” said gynaecologist Dr Harizah Hatim.