Uterine fibroids affect many women, but the condition is especially widespread among Black women. About 20 to 80 percent of women will develop uterine fibroids by age 50.

But while 70 percent of white women receive a fibroid diagnosis, 80 percent of Black women receive one. The prevalence of fibroids is up to three times higher in Black women compared to white women.

Black women are also more likely to have more serious symptoms and receive surgical treatment for fibroid compared to other groups.

A research study in 2021 interviewed 37 black women about their personal fibroid management decisions. The study concluded that historical and social conditions in part influenced those choices, and the researchers recommended that clinicians offer intersectional care that raises the voices of Black women.

The White Dress Project is a women-led organization that aims to increase research funding for uterine fibroids, including causes, prevention, and communities most affected by the condition. The Project focuses on education, advocacy, and building a community around women with fibroid through storytelling.

Nkem Osian, director of partnerships, spoke with Healthline about the Project’s history, goals, and current initiatives to empower women.

This interview has been edited for brevity, length, and clarity.

The White Dress Project is a nonprofit organization, and we are dedicated to raising awareness about uterine fibroids. It’s a really prevalent issue among women that doesn’t get talked about. It’s one of those conditions that everybody knows that everybody has it, but nobody wants to talk about it.

We’re advocating for more funding for research because it’s so limited. We don’t know how to prevent it. We don’t know what causes it. So we are advocating for more dollars toward research.

In addition to that, a critical piece of our mission is storytelling. We encourage women who are going through this on a daily basis to share their stories. We’ve created a platform and a community of individuals who are going through the daily struggles of fibroids.

It’s a safe space where they can share their frustrations, where they can share their stories without fear of being judged.

In addition, there’s a lot of misinformation out there about fibroids. So we bring our community information so they can make more well-informed decisions about their health. We focus on teaching them to be their best health advocate.

A lot of times, we hear from our community that they went to the doctor’s office and their pain and their symptoms were either downplayed or outright dismissed. They continued to suffer unnecessarily. That’s where being your own health advocate plays a significant role.

So the three pillars are education, advocacy, and building a community to empower women.

“I truly believe there’s so much power in our stories. For me personally, I come from a culture where there is such a culture of silence around menstruation and reproductive health.”

— Nkem Osian, director of partnerships, The White Dress Project

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The project was created in 2014 by Tanika Gray Valbrun. The year prior to that she underwent her first myectomy to remove fibroids from her uterus. During that first surgery, the doctors removed 27 fibroids.

While she was in recovery from that surgery, she walked into her closet and realized she had not one piece of white clothing. A lot of women who have fibroids don’t want to wear white because of the symptoms of fibroids, specifically the heavy bleeding during our menstrual cycle.

I also have fibroids. I’ve had so many humiliating experiences of bleeding through my clothing in public. Because of that, I always shied away from wearing white or anything white.

So the white dress is this emblem of hope. It’s an emblem of empowerment, saying that we are not going to allow fibroids to control us. We are reclaiming control over our lives, over our health, over our well-being. So that’s where that whole idea of the white dress stems from.

Tanika authored legislation to designate July as Fibroid Awareness Month. She chose July because that was the month when she had her first surgery to remove the fibroids. It’s like this commemoration of her liberation from fibroids.

I truly believe there’s so much power in our stories. For me personally, I come from a culture where there is such a culture of silence around menstruation and reproductive health.

When I was first diagnosed with fibroids, I didn’t even know what they were. I was scared, I felt alone. I felt broken. I felt like something was wrong with me. Why is it only me going through this?

When I started advocating with The White Dress Project and I started to share my story as a part of the organization and as a part of the mission, I realized how empowering it was for me and for others who felt like they had to suffer in silence. So sharing our stories really does break down the wall of silence around issues like this.

I also believe that storytelling is a powerful tool for advocacy to increase research. There’s one thing to have this data. There’s another thing to have the stories to give a space to that data.

There is a bill that was first introduced in March of 2020 in the House and was reintroduced in March of 2021 as the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021.

Stephanie Tubbs Jones was actually the first woman in Congress to introduce any type of bill around fibroids. She herself suffered from fibroids, and she’s passed away now. We thought it would be a great way to commemorate a pioneer in this space to name a bill after her.

The bill would allocate $150 million over the course of 5 years to the National Institutes of Health for fibroid research.

The bill also calls for improved data collection on fibroids. It will direct the Centers for Medicare and Medicaid to expand and improve data collection on which groups are affected by uterine fibroid.

We know that uterine fibroids affect about 70 percent of white women and about 80 or 90 percent of Black women. So we want to collect data on what groups are most affected and disproportionately affected by this condition.

In addition to that, it will create a public education program. It will direct the Centers for Disease Control and Prevention (CDC) to create a public education program around fibroids.

The bill directs the Health Resources & Services Administration (HRSA) to arm healthcare professionals with fibroid information. This material would highlight that Women of Color have an elevated risk for fibroids and should include information on all available treatment options.

“We always say that your relationship with your physician is a partnership. You are both working in partnership to come up with the best course of treatment for your care.”

— Nkem Osian, director of partnerships, The White Dress Project

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A lot of times, we hear from our community that hysterectomy is the only treatment option that they’ve been offered. And that should never be the case. Although there are not a whole lot of treatment options available, there are definitely more treatment options available than just hysterectomy.

That’s another reason we want to provide our community with accurate information. They can take it to their doctor and say all of these treatment options exist, but yet you only told me about a hysterectomy.

A lot of women — white, Black — they mention that hysterectomy is the first and only option that they’re presented with. But it’s even worse when it comes to Black women.

There is an abundance of Black women who expressed to us that hysterectomy was the only option that they’ve been presented with. So that is a very prevalent challenge among that minority community as well, in self-advocacy and empowering our community to become their own advocates for their health.

We have this series called the Dialogue with the Doctors. It’s a discussion among healthcare professionals in the field. One of the topics that gets a lot of interest is treatment options. We bring in doctors treating fibroids to arm our community with that information.

I think that’s another challenge when you go to the doctor — sometimes you’re just so anxious, you’re fearful. You’re worried, and you often forget what questions to ask.

We always say that your relationship with your physician is a partnership. You are both working in partnership to come up with the best course of treatment for your care. We respect their expertise. But remember, your expertise over your own body should be held in equal regard to your doctor’s expertise in the clinical aspect.

We host these educational events. We have an EmPOWERment Experience coming up in July [2022] in Washington, DC. We’re bringing doctors and patient advocates because their stories of our community are so impactful.

This is a volunteer-run organization. If people want to volunteer, they can go to our website. There’s a page called “Get Involved.” If they want to share their stories, reach out to us. We love posting stories on our page.

Also, reach out to your local congressperson. We have that info on our website.