Online international infertility group raises awareness for rare condition, MRKH

Janay Cook created world’s first MRKH group for Black women, ‘Sistahs Surviving Infertility’

An international online group is spreading awareness about a rare congenital condition through a one-of-a kind support group called “Sistahs Surviving Infertility.”

Mayer-Rokitansky-Küster-Hauser Syndrome, also known as MRKH, happens when the vaginal canal and uterus are underdeveloped or absent, although the outer parts are normal. The fallopian tubes and eggs are usually present. It affects nearly one out of every 4,000 - 5,000 females.

Online international infertility group raises awareness for rare condition, MRKH

Women who have this condition are biology female and must use IVF, surrogacy, or adoption to have children. There have also been cases of successful uterus transplants that have allowed women to carry their pregnancies full term.

“It was devastating. It’s bad news to hear at such a young, tender age,” said Shamika Rhoomes, a founding member of Sistahs Surviving Infertility. “It’s not that I thought I was ready to go and start a family the next day, but as a woman, you just always hear that women are the nurturers to produce offspring.”

Janay Cook, founder of Sistahs Survivng Infertility spoke to News4Jax about the moment she found out she had MRKH.

“The first thing he (the doctor) said was you don’t have a vagina. And of course, those five words for my mom and I we were devasting,” Cook said.

Cook was diagnosed with MRKH at the age of 18, during her senior year in high school. The Middleburg native turned her devastation into purpose by creating the online support group, catered for helping Black women, nearly 3 years ago.

Online international infertility group raises awareness for rare condition, MRKH

“I got on my laptop, and I literally just created a group on Facebook. The responses have been so overwhelming. This group saved my life,” Cook said.

The group is now global, providing support and resources to women across the world. They hold annual MRKH meet-ups, which includes community service and several days of bonding together. Last year’s trip was canceled due to the pandemic, but they are hoping to host one again this year. The women say community has played a major role on their path to healing.

“It is a difficult journey, and it can be very lonely very hard. And so having a community and the support system that resembles you as well is very, very important,” Rhoomes said. “Everything happens for a reason and your time to be at peace, or understanding, or just in a better place in general with this information is going to come.”

WJXT4 reporter Lena Pringle asked, “If someone is just finding out this news today whether they have MRKH or whether they find out in general that they’re infertile for whatever other reason what would your advice be to them?”

Feel your feelings, Cook said. That’s something I didn’t do when I was diagnosed. I just put a wall up because I didn’t know how to process it, I didn’t know the concept of what grief was at 18 so my biggest thing is whatever you don’t deal with deals with you.

Raven Riley, a founding member of Sistahs Surviving Infertility, was diagnosed at the age of 16. She said it may take time, but know that you have support.

“Gain a support system and take as much time as you need. But just know that it’s going to be okay and there is life after receiving this news,” Riley said.

As part of National Infertility Awareness Week, the group is holding several virtual events to support those dealing with infertility.

Here are a list of the events:

List of the events

You can follow the group on Instagram. Sistahs Surviving Infertility is also working to further its mission. If you would like to help them raise money to copywrite their name you can donate here.

Wat to reach out to Sistahs Surviving Infertility? Email them here.

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