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Why I Fight for a Month Dedicated to Fibroid Awareness

by Change the Cycle
June 27, 2019

Why I Fight for a Month Dedicated to Fibroid Awareness

By: Tanika Gray Valbrun, Founder, The White Dress Project

When I finally sought treatment for my fibroids, I had hit a breaking point of sorts. After years of dealing with these painful, debilitating tumors, I knew that I finally had to take the steps to rid myself of them. After seeking treatment, though, I felt I needed to do more than just find relief for myself. Throughout my journey with fibroids, I noticed the common thread of a general lack of drive to generate awareness of fibroids or potential treatment options for women. This surprised me, given the prevalence of fibroids and how profoundly they impact women’s lives. I recall asking one of my doctors why there were no 5K runs, health observance days or national fundraisers to help raise awareness of uterine fibroids – they didn’t have an answer for me. I wanted to give a voice to the millions of women dealing with what I went through, and knew that there was room in our society to do something more…something bigger.

The Need for Research and Treatment Awareness

I founded The White Dress Project to promote awareness and recognition of an underdiscussed condition, support research, and bring together a community of women to empower one another through the symbolism of the white dress. In 2014, I met with Georgia state representative David Scott to push for recognition of this agenda. With his help, and the help of other legislators, we started making progress. Rep. Scott declared July as Fibroid Awareness Month in the state of Georgia, and it became the perfect platform to share our story and encourage women to do the same, so that symptoms of fibroids and treatments could ultimately become common knowledge. To do this effectively though, we needed proof points on the prevalence of fibroids, who they’re impacting, and how these women are affected.

It surprised me to learn how scarce this information is, reflective of how infrequently fibroid research is actually being conducted. While the statistics most commonly used around fibroids are startling (e.g. up to 80 percent of women will have uterine fibroids by the time they turn 501), they’re outdated and unspecific. This means women or advocacy groups can’t access current information on how fibroids affect their communities, nor can they find the number of surgical procedures performed annually for the treatment of fibroids. Without up-to-date knowledge around how treatment options are being leveraged in the medical community, how can we expect women to ask the right questions, and advocate for themselves in the doctor’s office?

This lack of information around a prevalent health condition reinforces a vicious cycle. Less research being conducted and made available to women leads to less public advocacy to help support them. Low levels of public advocacy generally result in less funding, which comes full circle back to the lack of research. Without advocacy, it’s no wonder women are frequently blindsided by a diagnosis of fibroids. When I was diagnosed, I was shocked to find that I had been living with 27 fibroids! It’s not a condition that’s taken center stage in the medical community, and it hasn’t received a level of recognition on par with its prevalence from the public figures who have the power to make change. As a society, we need to do a better job of collectively driving change for women’s health, to ensure all women have access to the information and resources they need to live their best lives.

What We’re Doing to Change This

The White Dress Project has continued to connect with legislators to keep fibroids on their radar. In fact, we’ve already entered the bill to get Fibroid Awareness Month nationally recognized. We also recently held a congressional briefing at the Georgia state capitol, where we shared personal stories with legislators who came in not even knowing fibroids existed, but left with an understanding of their prevalence and the toll they take on women. Sharing the patient journey with legislators has been critically important in spreading our mission. We need to continue leveraging personal testimony to make sure the women’s health agenda remains top-of-mind for public figures, and encourage action that increases access to important medical information.

We can start by encouraging women to share their stories and spread the change, and it doesn’t take a trip to the state capitol to do this. Ladies, this Fibroid Awareness Month share your journey on social media using #MyFibroidStory to help put fibroids on the radar. If you haven’t been affected by fibroids personally, but you support this mission in solidarity with women who have, share your support on social media using #WhyIWearWhite.

I’m immensely proud of the work we do at The White Dress Project to empower women with fibroids to be fearless, and ignite waves of change in their own communities. With support from resources like Change the Cycle, we get to continue working toward our mission every day.

Learn more about The White Dress Project by following us on social media, @WeCan_WearWhite. You can also access helpful materials promoting fibroid education on Change the Cycle.

-Tanika

 

References

  1. Uterine fibroids.” Office on Women’s Health, U.S. Department of Health and Human Services. February 6, 2017. https://www.womenshealth.gov/a-z-topics/uterine-fibroids.
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