Fibroids—benign tumors that grow in or outside of the uterus—can be more than an inconvenience for women. Ranging in size from a pea to a melon,they can be down right debilitating, creating crippling symptoms ranging from anemia to infertility. Worse? Whether out of ignorance or out of stigma, women often suffer through in silence, despite the fact that they are incredibly prevalent: According to an American Journal of Obstetrics and Gynecology report, between 80 and 90 percent of African American women and 70 percent of white women will develop fibroids by age 50.
Through her nonprofit organization The White Dress Project, Atlanta resident Tanika Gray Valbrun, 40, is turning to spotlight on how fibroids affect women’s health. By encouraging women with fibroids to wear white, Valbrun hopes to raise awareness around fibroids, while simultaneously symbolizing the strength, courage, and perseverance of the millions of women around the country who deal with the issue every day.
Folks sat down with Valbrun to find out why she established the White Dress Project, why it’s important for women with fibroids to stick together, and what she hopes will happen to the movement next. This interview has been edited for length and clarity.
Explain why this cause is so personal for you.
It runs in the family. My mom lost two sets of twins to fibroids. She lost a set before me, got pregnant with me, and then she lost a set of twins after me. But even though my mother told me about her fibroids, you still don’t get the reality until you experience it yourself.
Even though my mother told me about her fibroids, you still don’t get the reality until you experience it yourself.
When did you learn you had fibroids?
I was diagnosed at 19. I’d always had heavy periods. My stomach always looked like I was three-months pregnant, but even through all that, I said “whatever.” I just thought that’s how periods were. After I was diagnosed, I started going to specialists. Some doctors would say to just watch and wait. But the problem with watching and waiting is that the fibroids are growing.
As soon as I started talking about it, everybody came out of the woodwork with their story.
Did the symptoms hinder you in any way?
There are so many women who have severe anemia because of fibroids. I am one of them. I’ve had five transfusions because I was severely anemic.
Fibroids completely took a hold on my quality of life. I wouldn’t go to white parties or have anything white in my closet. That may seem a bit superficial, but it made me think about how I’d never done so many things because of fibroids. I wouldn’t get a car with cloth seats because it’s harder to get blood out of it. You’re conscious about sneezing because you don’t want to worry about being embarrassed because you’ll mess yourself up. It takes a toll on you.
Why are fibroids such a misunderstood issue for women?
I think that there’s a stigma because women aren’t talking about it. We’ve been taught that we don’t talk about issues below the belt. We don’t talk about periods because it happens once a month, so it’s nothing special. You just prepare yourself, take the necessary medicines, and keep moving. But if we’re not talking about it, then no one else is going to take it up for discussion for us.
What did you learn about fibroids that was surprising to you?
It really shocked me how many women suffer from fibroids. Even though there are so many, so many of us aren’t talking about it.
I was also surprised when a doctor told me I was developing pica from fibroids.With pica, you crave certain things, like ice or soap or clay. I’d become so anemic, I had a strong craving for soap, just for the minerals. I didn’t always want to eat it, but just taking it out the package and smelling it was so soothing to me and made me feel stronger.
I realized that it was connected because as soon as I would have a transfusion I couldn’t stand soap.
What are some things women should be mindful of before or after a diagnosis?
What I’ve always told women to do is to be in tune with what is going on in their body. When you feel something is off, it’s time to get it checked out.
Any consistent pain means something needs to be addressed.
Any consistent pain means something needs to be addressed.
How large is your reach?
We have a chapter in the D.C./Maryland/Virginia area, and we have a presence in New York City, LA, Houston and in South Florida. We launched an ambassador program for people who had an interest in joining us and helping in any kind of way. Women volunteer and coordinate events in their region or city.
It’s relatively small and growing. It’s grassroots movement.Getting people to know we’re here, that’s half the battle.
Besides the personal experiences, why was it important to start this campaign with a potentially global reach?
There’s nothing being done about it. I was shocked that there are no runs, no T-shirts, nothing about fibroids awareness. When I started the organization, someone asked me: “Has anyone died from this condition?’ I was taken aback: dying shouldn’t be the standard that something needs to be advocated for.
If there were more funding, it would help to get the conversations going. If more legislators supported reproductive issues, that would also get conversations going.
What’s next for the White Dress Project?
We want to move toward a membership-based organization with dues so that we can support women with fibroids. We want to build a community. We’d like to assist with scholarships and grants to help women with copays or help medically no matter what stage they’re in. If someone needs help with recovery we’d like to provide support, like send meals to her house while she recovers.
We also want to ramp up fundraising so that we can dedicate funds to fibroids research. There are researchers who are looking at this but they may not be able to dedicate all of their research hours to fibroids research.
How does one help the White Dress Project or get involved?
They can visit whitedressproject.com or thewhitedressproject.org to get information and donate there, or they can follow us on social media, which has been important for us. We’re @WeCan_WearWhite on Twitter, We Can Wear White on Instagram, and The White Dress Project: We CAN Wear White on Facebook.