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The reason I started The White Dress Project is very personal.

My mother lost two sets of twins due to fibroids and I was the only one of her children who survived, so it was very important to me to have a voice for the millions of women who have suffered the same way my mother did. I wanted an organization which could serve in memory of my lost brothers and sisters.

I also have had a challenging fight with fibroids. I have had excessive bleeding, abdominal bloating and cramping for much of my life. 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. In July 2013, I underwent a myomectomy and had 27 fibroids removed, and during my recovery knew that I had to do something to bring awareness to this condition. 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 for 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 for 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.

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 50), they are 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.