Taking Charge of Fibroid Advocacy

Updated: Mar 18


Just envision constantly feeling anxious and worried during your menstrual cycle that during your public commute you could have an accident that would stain your clothes with blood. Imagine the burden of carrying extra clothes with you in case an accident happens. What if you began scheduling your routine life activities around your menstrual cycle out of fear of these accidents? Or what if you find yourself wondering if your peers at work and boss are wondering why you are going to the bathroom so often or taking so long during each bathroom trip? Women who suffer from fibroids do not have to imagine or wonder about these issues. These are just some of the real-life challenges many women with fibroids frequently face each month during their menstrual cycles.


The Mayo Clinic defines fibroids as, “noncancerous growths of the uterus that often appear during childbearing years. Also called leiomyomas (lie-o-my-O-muhs) or myomas, uterine fibroids aren't associated with an increased risk of uterine cancer and almost never develop into cancer.” Many women have fibroids that are not problematic at all and just as many suffer debilitating issues stemming from fibroids that can impact the ability to carry children, quality of life, and one’s mental state. Fibroids can exacerbate other health concerns such as anemia stemming from heavy and prolonged menstrual periods, urinary issues, severe pain, and depression. As with so many other health conditions, there is often a disparity of treatment and genuine care and compassion for women of color who suffer from fibroids. As such, many are forced to advocate for themselves.


“I looked in my closet and was thinking, I never wore white clothing. I thought about how traumatic this was. I wanted to do something to change that. The White Dress Project came from the idea that I never wore white because of my fibroids. If I did put on white it was with great fear or anxiety. I wanted to use a white dress as a feeling of hope and turn the negative feeling to positive. The issue still exists but it gives me a feeling of hope. If I do not feel like wearing white today I know someone else is wearing it for me.”

After my own encounter with fibroids and suffering in silence during my journey, I came across this wonderful organization called The White Dress Project (TWDP). It is a patient lead advocacy organization dedicated to raising awareness about uterine fibroids. The organization represents a sisterhood of like-minded women all with their own personal struggles of dealing with fibroids. It became clear once I learned about this organization that I no longer needed to suffer in silence or shame. I had the opportunity recently to chat with the founder of TWDP, Tanika Gray Valbrun.


Q: Tell me a little about your background and how you got involved with advocacy for women’s reproductive health.

A: I am a journalist by trade. My own personal journey started when I was a teenager. I did not understand why there weren’t any national conversations or advocacy about fibroids like you saw with fundraising rallies and walks and runs focused on diseases such as cancer or diabetes for example. So many I knew suffered from fibroids and we were not discussing it.


One day I realized I had no white clothing and I had accommodated my life due to the fibroids. I was terrified to wear white. I did not want to be social or go out and I did not want to spend the night at people's houses. I felt that these were all things and situations I could not control. I had to leave the house with extra clothes and pads all the time. After the first surgery, I still had multiple fibroids and more removals would be needed in the future. When I finally decided to pursue a solution, the first treatment option offered was a hysterectomy. I was devastated when given that choice. After the first surgery, I had a lot of time to think and realized how I accommodated my life to fibroids. I also came to the realization that we were not talking about this topic like we should. The first thing I did was to work on legislation to recognize fibroid awareness in Georgia. It impacted my life and I had a need to share my story with others who were also impacted by fibroids.


Q: What led you to start this open dialogue about fibroid awareness? Why do you think there is such a stigma around discussing fibroids?

A: I think the stigma exists for a lot of reasons. As women, we are taught that speaking about things like a period or menstrual cycle is not something that is considered classy or sophisticated. We are taught if we want to be professional don't talk about these things. This helped to create a culture of suffering in silence. These types of symptoms; heavy bleeding, pain, and carrying clothes around have been normalized. We normalized bleeding multiple months and carrying extra clothes as that is a part of a woman's journey. The ripple effect is fibroids being stigmatized. If you talk about what is normal it becomes stigmatized because everyone goes through it. Once we normalize it no one wants you to talk about it. You are supposed to deal with womanly issues on your own. In a male-dominated society where everything has to be said so delicately not to offend male counterparts, you do not discuss certain things. We are taught periods are gross and anything below the belt should not be discussed out of fear of making others cringe or feel uncomfortable.


Q: How did you come up with the idea to start The White Dress Project?

A: The idea was a part of the same conversation that when I looked in my closet and was thinking, I never wore white clothing. I thought about how traumatic this was. I wanted to do something to change that. The White Dress Project came from the idea that I never wore white because of my fibroids. If I did put on white it was with great fear or anxiety. I wanted to use a white dress as a feeling of hope and turn the negative feeling to positive. The issue still exists but it gives me a feeling of hope. If I do not feel like wearing white today I know someone else is wearing it for me.


Q: What is your vision for the project and where do you see the organization in the future?

A: I am very excited about the future of TWDP and where we can encourage people to go. I want to see it as a national conversation and global initiative to talk about uterine fibroids. The same way we rally around breast cancer awareness and other disease awareness where organizations get involved, sports teams, etc. I want that for TWDP. I know that we have infused different industries in this work that we are doing. It needs to be in all healthcare, fashion, marketing, and technical industries. In all of these industries there are women and people who should know that if you have a uterus, the potential to be diagnosed with fibroids at some point is great. I would like to see this message spread around so people know what to ask about at their doctor visits. It still baffles me that we do not have fibroids routinely checked for during wellness checks. We are taught to get a pap smear which has been marketed to us since the 90s and early 2000s. Pap smears were marketed so effectively that you felt like everything that should have been checked was taken care of with just that test. The fact is, this test is only performed on the circular part of the cervix and no place else, not ovaries, fallopian tubes, or the uterus. It just checks for cervical cancer cells. I think the same methodology needs to happen for fibroids so that a comprehensive test is developed to check for them which in turn will give us a better understanding of their occurrence. I named it The White Dress Project because we needed something so that the conversation could evolve so there could be more creativity around the programming we create. Saying The White Dress Project is a conversation starter that does resonate with you.


Q: What were some things that surprised you about fibroid research as you were on your journey?

A: I was surprised by how little some people know about fibroids. We get questions sometimes about whether it is the same as fibromyalgia? Some people ask if fibroids can kill you. The fact that the standard has to be death before it is considered to be a serious women’s health issue is troubling. It has also been a challenge to get fibroid sufferers to speak out as they are often very apprehensive about sharing their stories. We would ask people to share and they did but did not want to share past the organization. It was challenging to encourage people and to help others not feel lonely and we could not get anyone to share.


The other thing is the interaction with policymakers who say is there anything else fibroids can be coupled with in terms of advocacy. They would ask if we could put it with uterine cancer or endometriosis. Just the idea or feeling that fibroids cannot stand on its own is a conversation by itself is an issue. It goes back to why it has to be the standard of death for people to care about it as a substantial medical issue.


Q: Do you find that there is a shortage of doctors who specialize in the treatment of Fibroids?

A: We do hear that from our community a lot. They are not finding a lot of doctors who know how to perform less invasive procedures. Doctors generally talk only about myomectomy and hysterectomy options. Doctors will not mention a procedure if they are not well versed in it and subsequently, the patient will not know about other options. If a doctor cannot do it they tend to not recommend it. Of course, we know that just because you cannot do it does not mean it cannot be done. On top of that, there is a health disparity with black women being disproportionately affected. The amount of Black doctors is low and the number of OB gyns is less than that. There have been studies in maternal mortality that show Black physicians interacting with Black patients tend to have better outcomes.


It should not be that hard to get information about any procedure or medical treatment from a doctor. There should be no excuses for lack of information. Sometimes we make our own excuses like we cannot take additional days off from work for appointments but those excuses end up being barriers in the way of better health outcomes for fibroids. We are our best advocates and as such have to do it for ourselves.


Q: Can you talk about the Uterine Fibroid Research and Education Act of 2020 and the likelihood of the legislation passing in Congress?

A: It came to be because a group of advocacy groups reached out to members of congress. In 2007 Stephanie Tubbs Jones wrote an op-ed talking about fibroids as something we need to pay attention to. She suffered from fibroids. It was such a poignant piece but went nowhere in Congress. That legislation was revamped by Representative Yvette Clarke from New York who also suffered from fibroids and wanted to make sure it was brought back up. That is why the bill is named after Stephanie Tubbs Jones in honor of her original advocacy. Some of the things the bill would allow for are the creation of a uterine fibroids public education program through the Centers for Disease Control and Prevention (CDC), improving data collection on which groups are affected by uterine fibroids, and direct the Health Resources and Services Administration (HRSA), to disseminate information regarding uterine fibroids to health care providers and advising them of the elevated risk for women of color to develop uterine fibroids and the available treatment options. It would also allow for $30 million a year over a 5 year period to go towards uterine fibroid research. The bill would allow for more education through the CDC and in addition allow for more information to be disseminated on fibroids to healthcare providers. We also want them to recognize July as Fibroid Awareness Month for the entire country. The bill still has to go through a process and it is a very long journey we still have.


Q: In summary, what are your hopes for the future of Fibroid treatment and awareness?

A: I really hope there is a cure for fibroids, more studies concerning the genetics of fibroids, and answers to what the root cause is. Is it connected to our food or what we put into our bodies? Why does it form more in Black women? I just want to know more and understand the dynamics. Is it something we are doing to cause them to grow or how does it manifest in different bodies and ethnicities whether Black, White, Asian, etc. Are there things we can do to eliminate them in a safe way that doesn't involve surgery? The answers to these questions show why this bill is so important and why we need continued research.


It is evident that what makes this wonderfully impactful organization so groundbreaking is that it consists of women that are all stakeholders and have their own very personal stories struggling with fibroids. Their willingness to share is both inspirational and hopeful. It has not only saved and continues to save lives, but it also empowers women to speak up. It encourages women to find their voices to advocate for fair and equitable treatment that can transcend and improve the overall quality of their lives. We thank Tanika and The White Dress Project for their continued work and perseverance in the fight to achieve recognition for fibroids not just at the national level but global level as well. To learn more about The White Dress Project, please visit them online at The White Dress Project.


Closing

Tanika Gray Valbrun is an award-winning journalist, educator, and non-profit founder with a passion for women’s health. After her personal struggles with uterine fibroids including two myomectomies, Tanika’s passion for women’s health inspired her to create The White Dress Project, a non-profit organization dedicated to providing support for women suffering from fibroids and to, raise awareness and for fibroid education. As the founder of, The White Dress Project, Tanika has successfully worked with doctors, health advocates, and elected officials across the country to get legislation passed declaring July as “Fibroids Awareness Month”. Recognized as a thought leader and patient advocate for uterine health, she has also spoken around the world encouraging women to be their own best health advocate. Many women with symptomatic fibroids never dream of wearing white, because of their heavy menstrual bleeding or bloating. The white dress is a “symbol of hope” that women with fibroids can feel supported and know that they do not have to suffer in silence. In addition to encouraging women to be their own health advocates, Tanika works as a Senior Content Producer for a global news organization where she has been awarded three coveted Peabody Awards for her contributions in journalism.


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