Race Across the World: MRKH – “Nobody is prepared for the diagnosis”

Race Across the World contestant Betty Mukherjee was praised after revealing she had been diagnosed with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) on the show this week.

Betty told BBC News she had been nervous about the episode being released but that the widespread positive response has been “overwhelming in the best way”.

According to the NHS, MRKH affects 1 in 5,000 women.

It primarily affects the reproductive system, with women being born without a vagina and uterus or the vagina and uterus fail to fully develop.

MRKH is a congenital abnormality, meaning it is present at birth, but many people are not diagnosed until they are in their teens.

Betty, 26, is one of them, and speaking with her brother James on the BBC One show, she revealed that she was diagnosed shortly after turning 16.

“Young women are kind of told, ‘You’re going to get married and have a family,'” she said on Wednesday’s show.

“When that is taken away from them at an early age, it creates doubt in their minds and it creates doubt about their purpose as people.”

Because of her illness, Betty has no uterus or womb and only one kidney.

Betty told BBC News she was initially unsure whether to talk about her diagnosis on the show.

“When I was diagnosed I had never heard of this disease, and now it’s clear a lot of people have never heard of it,” she said.

She said one of the reasons she decided to speak publicly about the issue was to raise awareness.

“If it helps someone, if it helps someone who’s just been diagnosed, then they can say, ‘OK, I’ve heard this before, this person was talking about it,'” she added.

Betty said there was a lot of anticipation before the episode aired and the “scary part” was not knowing how people would react.

“But it couldn’t have gone any better,” she said.

She still wants to continue telling her story.

“If it helps some people, then I’ve done my job.”

Earlier in the show, Betty admitted that she and her brother weren’t particularly close in the past.

But their relationship developed throughout the series, and in Wednesday’s episode, James became so emotional after discussing Betty’s infertility that he asked the production team for hugs.

Women who have been diagnosed but still want to have children have options including IVF, surrogacy and adoption.

Charlie Bishop, director of peer-led charity MRKH Connect, said Betty’s confessions on the show were “unbelievable”.

“The courage to be so open and vulnerable in that forum on a show that isn’t meant to be that way is incredible,” she told the BBC.

Charlie, now 40, also found out he had MRKH at the young age of 17.

“Nobody is prepared for this because nobody is taught that this is going to happen,” she said.

“We were taught that our period would come, but when it didn’t come, we weren’t taught what it really meant. We were told, ‘You just started late, it will come’.”

She believes her biggest challenge has been the impact her diagnosis has had on her mental health.

“It took me a very long time to understand that, and several years to realise what it meant to me,” Charlie explains.

“I was feeling sad and traumatized, but I didn’t know how to process these emotions.

“It’s hard to put into words how I felt at that moment.”

Daisy Jonas, 26, said when she was diagnosed with MRKH aged 15, she was “ignorant” about how it would affect her life.

Daisy now has a two-year-old son, born via surrogacy after her mother offered to carry the baby for her and her husband.

“I always wanted to be a mother,” she told the BBC.

“She offered to have the baby for us and we said, ‘Yes, please,'” she said.

Daisy said she is still struggling to accept her infertility and her inability to conceive a child of her own.

“I’m also a midwife, so I can’t run away from pregnancy,” she says.

“But even though I’m not giving birth myself, I can still be a part of the birth process for the people I care for at work.”

She added that she was moved when she saw the video of Betty talking about her diagnosis.

“I’ve never heard anyone speak so publicly and in depth about MRKH,” she said.

“It only takes one person to start a conversation.”

Charlie says that for many of MRKH’s patients, coming forward is the hardest part.

She argues that people tend to initially feel embarrassed or ashamed about the disease and often don’t know how to break the diagnosis to family and friends.

Conversations about infertility, children, and sex can be especially difficult.

“We need to normalize these discussions and make it easy for people to view and interact in a way that is comfortable for them,” she continues.

She hopes the scenes on Wednesday’s show will be an opportunity to continue raising awareness of the disease and “build on what Betty started.”