WEST PALM BEACH, Fla. — Next week is National Infertility Awareness Week and a Florida woman is helping to raise awareness about a rare condition that isn’t talked about a lot.
Raven Riley remembers her high school years well.
“I was very vibrant,” she said. “I was very outgoing, and I was into sports. I was a cheerleader. I was the life of the party.”
Until her sophomore year when she learned a rare condition would change her life.
“I was born without a uterus and also a vaginal canal,” Riley said.
It’s called MRKH, according to the Mayo Clinic, it affects 1 in 5,000 women globally.
“I was diagnosed when I was 18 during my senior year and for me, I feel like it was the doctor’s delivery is what really created the depression,” Janay Cook said.
“What did he or she say to you,” WPTV reporter Sabirah Rayford asked.
“He was just very cutthroat— ‘you don’t have a vagina’, ‘you can’t have children and literally after he said that he just sucked the air out of the room,” Cook said.
Cook is the founder of Sistahs Surviving Infertility. Next week the now global support group is hosting several virtual events for National Infertility Awareness Week.
“People think it’s just about infertility, it’s so much more, Cook said. “You question your womanhood.”
Both women have now had corrective surgery. But they are fighting for the condition to be recognized by insurance companies.
“If you decide to get surgery, they consider that a sex change, which is mind-blowing because you can’t help how you are born,” she said.” We weren’t born with a vaginal canal but that doesn’t mean we aren’t women.”
Cook said after 4 years they now have members from all over the world, including Brazil and Africa.
“We have a lot of work to do, but just seeing the small impact that we are having, it’s just so beautiful,” she said.
MRKH causes the vagina and uterus to be underdeveloped or absent, although external genitalia is normal. As a result, women born with MRKH do not menstruate, nor can they carry a pregnancy.
For more information on the condition https://medlineplus.gov/genetics/condition/mayer-rokitansky-kuster-hauser-syndrome/