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 history, goals, and current initiatives of the Project.

The interview has been edited for clarity and length.

The White Dress Project is dedicated to raising awareness about uterine fibroids. It is a very common issue among women that does not get talked about. Everybody knows that it is one of those conditions, but nobody wants to talk about it.

“We want more funding for research because it is so limited. We don’t know how to stop it. We don’t know what causes it. We want more money for research.”

A critical piece of our mission is telling stories. We encourage women who are going through this to share their stories. We created a platform and community of people who are going through the same struggles as you.

It is a safe place where they can share their stories without fear of being judged.

There is a lot of misinformation about the condition. They can make better decisions about their health if they have the community information. They are taught to be their best health advocate.

Sometimes, people go to the doctor for pain and their symptoms are downplayed or dismissed, and we hear from our community that this is a lot. They continued to suffer. Being your own health advocate is a significant role.

The three pillars are education, advocacy, and building a community.

“I believe that our stories have a lot of power. I come from a culture where there is a lot of silence around menstruation and reproductive health.”

The White Dress Project has a director.

The project was created by Tanika Gray Valbrun. She had her first myectomy the year before that to remove fibroids. The doctors removed 27 fibroids.

“She was in the recovery room after the surgery and realized she had not put on any white clothing. Women with fibroids don’t want to wear white because of the symptoms of the disease, specifically the heavy bleeding during their menstrual cycle.”

I have other reproductive problems. I have had many embarrassments when I have bled through my clothing. I always avoided wearing white.

The white dress is an emblem of hope. It is an emblem of empowerment, saying that we are not going to allow fibroids to control us. We are regaining control over our lives and well-being. That is where the idea of the white dress comes from.

July is Fibroid Awareness Month. She had her first surgery in July and chose that month because. It is like this commemoration of her liberation from fibroids.

I believe that our stories have a lot of power. I come from a culture where there is a lot of silence around menstruation and reproductive health.

“I didn’t know what fibroids were when I was first diagnosed. I felt alone and scared. I felt like I was broken. I felt like something was wrong with me. Why is it only me going through this?”

I realized how empowering it was for me and others who felt like they had to suffer in silence when I started sharing my story with The White Dress Project. Sharing our stories breaks down the wall of silence around issues like this.

I believe that telling a story is a powerful way to increase research. There is one thing to have. There is another thing to give a space to.

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.

The first bill around fibroids was introduced by a woman in Congress. She died from her own injuries from fibroids. We thought it would be a great way to remember a pioneer in this area.

The National Institutes of Health would get $150 million over the course of 5 years.

The bill calls for better data collection on the condition. The Centers for Medicare and Medicaid will be directed to collect more data on which groups are affected by uterine fibroid.

About 70% of white women and about 80% of Black women have uteruses. We want to know what groups are most affected by this condition.

It will create a public education program. The CDC will be directed 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.”

The White Dress Project has a director.

We hear from our community that hysterectomy is the only treatment option that they have. That should never happen. There are more treatment options available than just hysterectomy, even though there are not a lot of options available.

That is another reason we want to give our community accurate information. You only told me about a hysterectomy, even though they can take it to their doctor and say all of these treatment options exist.

A lot of women mention that they are presented with only one option, and that is hysterectomy. It is worse when it comes to Black women.

Black women are often told that hysterectomy is the only option they have. That is a challenge that is faced by 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.

Sometimes you go to the doctor and you are so anxious you are afraid. You forget what to ask when you are worried.

“Your relationship with your doctor is a partnership. You are working together to come up with the best course of treatment for your care. We respect their knowledge. Your doctor’s expertise in the clinical aspect should be held in the same regard as your own expertise in the body.”

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 congressperson. We have that information on our website.