Little is known in the medical field about why the benign pelvic tumors impact African-American women the most. Tanika Gray Valbrun, founder of the White Dress Project, is on a mission to change that.
Valbrun’s nonprofit, established after her personal experience with the condition, supports fibroid survivors and promotes national awareness.
“I actually did get diagnosed with fibroids, probably around 26 or 27,” she says. “A doctor said to me, ‘Has anyone ever told you you have fibroids?’ And I was like, ‘No, not the thing that my mom had.’”
Valbrun, 45, was her mother’s “miracle baby,” born after her mom lost a set of twins due to fibroids. Her mother later underwent a hysterectomy.
She suffered from heavy bleeding since starting her menstrual cycle, a common symptom. So much so that her life revolved around it.
“I learned that you never wear any white clothing. I learned that you never have any light-colored anything in the house. No light sheets, no light towels,” she says.
While recovering from her first surgery, a myomectomy that included the removal of 27 fibroids, she flipped the idea of the color “white being so prohibited” and turned it into a “symbol of hope.”
Word In Black sat down with Valbrun to learn more about the White Dress Project and the movement for fibroid prevention.
WORD IN BLACK: Can you share more about the inspiration behind the White Dress Project? What happened during your first recovery that sparked the idea?
VALBURN: It was during that recovery that I said to myself, “I don’t understand why no one’s talking about this. Why we have no walks or runs. Nobody’s asking for money. But every time you say something about fibroids, people are like, “oh yeah girl, like me, my mom, my aunt, my cousin.” And it just dawned on me that there’s so many of us who are living with this silent thing, thinking that the symptoms of it are normal, and they’re not. That’s where the White Dress Project was born.
WIB: Over the last 10 years since its founding, what is one of the greatest accomplishments of the organization?
GV: We really created a community and really encouraged people to tell their stories, and I think because people have told their stories we’ve influenced culture. There have been so many sitcoms and drama series that have touched on fibroids, have touched on endometriosis. There have been celebrities who have spoken out about their fibroid journey. And do we have the data on that to know that it’s us for sure? Who knows? We don’t because it’s hard to tell. But all we know is that before we started doing it, people weren’t doing it. So, we want to take a bit of credit for that in creating the community.
WIB: Has the organization influenced any legislation around fibroids?
GV: We wrote legislation to declare July as Fibroids Awareness Month. It’s not necessarily a law or anything like that. [It means] Congress has said that they recognize that this month is an awareness month.
And what we do around July is rally our stories. We come together as a community. What it has done is allowed us to have a greater voice.
WIB: How about research?
V: We’ve also been a part of the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act that a representative from New York, Yvette Clark, introduced. It was also recognized on the Senate side before Kamala Harris became Vice President Harris. It’s been supported by Senator Cory Booker and Senator Shelley Capito, who is a Republican from West Virginia. And a host of Democratic leaders.
So, that says that we would like $150 million over the next five years for NIH, for our government agencies, to really investigate the cause of uterine fibroids and what happens specifically to Black women, why Black women are disproportionately impacted, but what is the cause for women overall?
WIB: What resources does the White Dress Project offer? And where can people access them?
We have events all across the country that bring communities together. We have so much education and resources that people can take directly from our website or our webinars, our YouTube page, and our Instagram, that they can take directly to their doctor. Questions that they can take directly to their doctor. They can have these conversations with their friends.
So, once again, it gets the conversation going and allows people to know that they’re not alone.
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