Q&A with Tanika Gray, White Dress Project Founder
For Fibroids Awareness Month, we sat down with a woman who has made it her mission to fight them. Through her organization The White Dress Project, Tanika Gray hopes to band more women together who suffer from fibroids in silence. Experiencing the condition’s negative physical and emotional tolls first-hand, she is working countless hours to increase awareness, fund medical research and ultimately forge a real chance at finding a cure.
CTC: How have fibroids affected your life?
TG: Fibroids have dramatically affected my life, not only physically but also emotionally and mentally. You simply can’t have fibroids without it affecting your life. It was problematic when it came to work and my period would be so heavy, for example. I had to use sick days/vacation days to take off of work because I couldn’t stand the potential embarrassment of excessive bleeding and having an accident.
Before I was married and even now that I am, the fear of messing up mattresses lingers. If you’re dating, then you’re worried you’ll bleed through in the middle of dinner or have even more concerns about spending the night. Heavy bloating, cramps, and constant urges to urinate because your fibroids sit on your bladder are just a handful of physical obstacles.
Mentally, you don’t feel confident. Your doctor can’t always explain what’s going on. It has a strong emotional toll on you. Fibroids have absolutely hindered my quality of life.
CTC: What aspect of your life pushed you to talk to your doctor and get help?
TG: My story was a little bit different; I knew I had fibroids in my early teens because my symptoms were similar to my mother’s who lost two sets of twins, one before me and one after me. I always knew how they could affect the birth of a child. I knew what I’d be dealing with. That helped me prepare for what I needed to do.
It wasn’t until after I was married in 2012, when I went to the doctor to address building a family of my own. I said, ‘I have these fibroids, what can I do?’ He said something that was hard to hear: ‘You’ll never be a mother; you need to save your money for a surrogate.’
A month later, a doctor at Emory University, said she would try to preserve my uterus, my body didn’t respond well to certain treatments. My fibroids started to break apart. It was the worst pain of my life. I had to have emergency surgery. She removed 27 fibroids.
It was during my recovery when I thought to myself: this is crazy; no one is raising money for this cause, no one is petitioning on Facebook. I understand that breast cancer is serious, but I think fibroids are too.
What I find challenging, is that legislators say this isn’t killing anyone; this is not uterine cancer. I say to them: the fact that my mother lost two sets of twins and I don’t have siblings because of that is important enough for me. Four lives were lost because of this epidemic.
This is when I felt compelled to do something about it and contacted a state representative. She was able to sponsor a resolution for me that declared July Fibroids Awareness Month. This is exactly what we needed for our organization to be taken seriously. We needed something concrete to rally grassroots efforts, so this was a solid start.
It was also during this time of recovery from surgery that I realized I didn’t have white in my closet at all. For me, it meant I was making a sacrifice that I felt I shouldn’t have to make. I wasn’t wearing a color common for summer White Parties and practically essential for wedding festivities out of embarrassment that I might bleed through? It just seemed silly that in the age of hovercrafts we still haven’t found a fix for something so common.
CTC: What more would you say has been a big struggle for the White Dress Project?
TG: People are reluctant to donate money if it is a nonprofit that isn’t well known. Understandably, they want to be sure where the money is going. We want people to know they can trust us, we’re here, and they can trust that their money is going to good use.
My entire board all work full-time, high-demand jobs and volunteer on this board. So balancing that is definitely challenging.
Additionally, I am fighting the stereotype that branding/marketing for cause campaigns must be connected to cancer in order to raise funds. Is it right that we can only talk about women’s health if it’s only related to cancer? I don’t think so. One percent of women who have uterine fibroids do have it become malignant and turn into cancer. So, there is a valid connection to cancer where fibroids are concerned. But, 80% of women by the time they’re 50 years old, will experience fibroids. And I think that’s significant on its own.
Lastly, we face a challenge when it comes to education. I can’t tell you how many people confuse uterine fibroids with cystic fibrosis!
CTC: What’s been one of the most rewarding parts of creating The White Dress Project?
TG: Loads of opportunities to spread the word. I attended the Essence festival on behalf of White Dress Project and was profiled in Essence magazine this year. We’ve been on local television and radio. And, the most satisfying part of all of these experiences has been to read and hear responses from women who have tuned in and thanked us for our work because they’ve dealt with fibroids for far too long, too.
CTC: What would be your biggest dream for The White Dress Project to accomplish?
TG: Though it might sound lofty to some, I want to find a cure for fibroids. I want to know why they form, if they’ve formed, what preventative measures you can take if any and what procedures are available pre-surgery.
Hologic has provided quite a few options for many, but do people know about it? We need to get the word out. People shouldn’t leave their doctor’s offices thinking they need a hysterectomy as their only option.
CTC: If there are one or two things about fibroids that you would like to tell women, what would that be?
TG: Take care of your bodies. Not just the outside. I’m talking the totality of our health is about taking care of your emotional side too, not just eating right and exercising. Women often put everyone else’s needs before themselves. You shouldn’t have to pack your car with pads on pads and extra leggings just in case you have an accident. Get help.
Have more questions? To learn more about the White Dress Project visit the website here.
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Tanika Gray was invited by Change the Cycle to discuss fibroid awareness and the White Dress Project. However, the opinions expressed in this blog are those of Tanika Gray. For an overview of the risks and benefits of the MyoSure tissue removal procedure and removal of fibroids click here.
- Posted by holx-admin
- On August 12, 2016