The White Dress Project, a non-profit that raises global awareness about the uterine fibroid epidemic through education, research, community, and advocacy, hosted The EmPOWERed Patient Tour which was geared to further build community with fibroid patients.
Can you tell us more about The White Dress Project?
Our organization was founded in 2014 by Tanika Gray Valbrun. She started this organization with the mission to raise global awareness about the uterine fibroid (UF) epidemic through education, research, community, and advocacy. We are dedicated to this mission, by advocating for research funding, highlighting reproductive health inequities, educating many on fibroids and their treatment options, and empowering a community that will advocate for their best health choices and no longer suffers in silence with this chronic illness. Our organization is primarily comprised of women who have fibroid stories which makes us best positioned to serve our audience.
What impact would like The White Dress Project to have in the community?
When Tanika started this organization, she wanted the white dress to symbolize the hope that one day people managing life with fibroids will be able to wear white again and overcome the disease. Fibroid patients sometimes shy away from wearing white due to their heavy periods. Further, fibroid patients may suffer in silence due to things like guilt, shame, and stigma surrounding the disease or not having adequate access to information for care and treatment options. We are creating a community of patients who do not have to suffer alone, can have access to up-to-date educational resources for research and treatment options, and an advocate for better support for research and access to care.
Let’s talk about the importance of fibroid awareness and how many women it impacts globally?
Fibroids have a substantial impact on women globally. The research has shown that 90% of Black women and 70% of white women develop fibroid disease by the age of 50. 60% of black women develop fibroid disease between 35-40. The size and growth rates of fibroids are higher in Black women as well. Black women have higher rates of hospitalization, myomectomies, and hysterectomies and suffer from more post-surgical complications. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3787340/
What are some of the risk facts this is ignored that women, especially teen girls aren’t aware of?
The exact cause of fibroids has yet to be determined which is why we support bills such as Stephanie Tubbs Jones Uterine Fibroid Research and Education Act to fund more research. Women are most likely to develop fibroids during their reproductive years and black women are at higher risk for the development of large fibroids that may require more invasive procedures. Some risk factors that researchers have considered include vitamin D deficiency, family history of fibroids, and estrogen dominance.
Why is it important for fibroid patients to know the diversity of treatment options that exist, including minimally invasive options?
This is highly important as access to care could preserve fertility options for patients who may want to become pregnant in the future or who want to minimize the overall risks that can come with invasive surgical treatments. Sometimes patients think that a hysterectomy is the only option for them. While that may be the case for some, there are several advanced treatment options available today that provide effective treatment and relief for fibroid patients such as myomectomy, Sonata Treatment, and Acessa. We always encourage our community to educate themselves on the types of treatments that exist today to partner with their healthcare providers on the best solution for them.
How and why does The White Dress Project encourage women with fibroids to share their stories and build community?
It is important for fibroid patients to share their stories because it helps to build community and raise awareness. We must continue to raise awareness so that patient experiences are not minimized and to mitigate the stigma surrounding the disease. With the number of women who are impacted by fibroids, they need to know that they are not alone. When one patient comes forward with their fibroid experience, the next patient feels encouraged to share theirs. It helps to build a supportive community that knows that they are not alone in their experiences and can also provide hope. Events like our Empowered Patient Tour help to bring patients together where they can meet new friends and extend their support network while learning.
How does The White Dress Project help to bridge the gap between patient experiences, doctors, and community leaders?
These individuals are essential to carrying out our mission. Patient experience is at the core of our organization. We partner with doctors, community leaders, government officials, wellness organizations, and organizations that support other diseases that may impact women such as endometriosis. We always strive to have diverse representation from these fields at our events to ensure that our community has a holistic view of research, treatment, and advocacy while also building a support network.
Can you tell us about the EmPOWERed Patient Tour and what are some things that attendees can expect to gain from attending?
The tour will be a great opportunity for fibroid patients and their supporters to learn more about the disease and the latest treatment options available to them today. They will also be able to meet other fibroid patients, which we have found to be highly beneficial to attendees at our events. We want our attendees to feel empowered to take control of their fibroid journey and give them the tools and community to assist them along the way. These events will also give attendees a taste of what to expect at our Empowerment Experience next summer!
Can you tell us about the guest speakers that will be part of the tour?
Most of our guest speakers will be local to the city where the event is taking place and will vary from site to site. The speakers at the events could include OBGYNs, fertility specialists, mental health specialists, and government officials. We will also have representation from The White Dress Project at every event.
What would you like our views to gain from this interview?
I would like viewers to feel encouraged to share their stories if they are fibroid patients or learn more about the disease to support someone in their life who is. One of the ways that they can do this is by attending one of our Empowered Patient Tour events.
How can people connect with The White Dress Project and the EmPOWERed Patient Tour?
Visit our website, thewhitedressproject.org, to see our upcoming tour dates and to register for an event in a city near you! We will also wrap up our tour with our second annual Empowerment Experience, a multiday event in Washington DC in July 2023. Join our mailing list and follow us on Instagram @wecanwearwhite.
Photo Credits:
White Dress Project Photo 1- Reese Bland
White Dress Project Photo 2 & 3- Moments by Angie
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