Tanika Gray: Working to make July National Fibroids Awareness Month

tanika-grayTanika Gray, broadcast journalist, communications professional, and Founder and Executive director of The White Dress Project

Tanika knows a lot about uterine fibroids. They’ve impacted her life from a very early age.

Her Mom had uterine fibroids and continually experienced very heavy menstrual periods. Sadly, she lost two sets of twins because of her fibroids.

From the young age of 13 Tanika had heavy periods. “They altered my normal daily life because I adjusted everything I did to be prepared for a surprise period, a super heavy period, or a very long period.

…carrying extra clothing with me just became a way of life.
Keeping stashes of heavy pads in my car, my purse, at work, at home…and carrying extra clothing with me just became a way of life. But I didn’t want to believe that it was the fibroids that were causing these symptoms. I was in denial.”

When she was 22 years of age, her bleeding was so out of control that her OB-GYN gave her a procedure called Dilation and Curettage (D&C) to remove tissue from inside her uterus. “That’s when we realized I had fibroids. My doctor recommended that we take the “watch and see” approach because I was too busy with life — school and a career — to get side tracked with other procedures. I trusted that things would get better.”

Women with fibroids often do double duty. “We start thinking that all the compensations we are making are normal. We have to be diligent all day, every day (and night).

“Living with fibroids is traumatic and exhausting! It’s so stressful!”
We are constantly checking to make sure we have supplies and changes of clothes. After sitting, we look back to check our chairs to check for blood. And how many dates have been ruined? How many mattresses have been destroyed?  How many times do we have to go to the bathroom to check — just to be sure? Living with fibroids is traumatic and exhausting! It’s so stressful!”

Tanika sometimes feels she has a form of post-traumatic stress disorder from so many experiences of this heavy and unpredictable bleeding throughout her adult life.

In 2012, Tanika got married, and she and her husband began planning for children. “I knew I had fibroids and that now was the time to address them. After an examination, my doctor delivered devastating news: I would never be able to carry a child and that I should start saving money and plan for the surrogate route. I felt betrayed! I had done everything right: worked hard, gone to school, and got married. I never dreamed that the fibroids would do this!”

Tanika and her husband prayed, and soon one of her girlfriends called to say she had just heard a doctor from Emory University Hospital on the radio talking about treatment for fibroids and preserving fertility. “I picked up the phone and made an appointment.”

This doctor said her fibroids were severe, but not all hope was lost. The doctor performed a procedure that would enable Tanika to bear children, but shortly thereafter her uterus began contracting; her fibroids broke apart. “I was basically in labor; it was the worst pain I’ve ever had!”

She was rushed into emergency surgery (a myoectomy) compare-uf_tx_removing-destroying_13oct2015where 27 fibroids were removed.  It was a traumatic experience, and recovery was very difficult.  “These fibroids had been in my body for so long that my organs altered their position to accommodate them. My intestines, ovaries, and other organs were being crowded out, and when there was suddenly all this free space, my intestines shut down out of shock.”

Her surgery was in July, 2013, during the heat of summer, and her recovery took nine weeks. When she was finally strong enough to walk, she went into her closet and realized that she didn’t have a stitch of white clothing. “It hit me! I have not worn white, or light pants, skirts, or dresses in years!  I had avoided Labor Day parties and other spring and summer social gatherings because I couldn’t wear white. That’s when I said, ‘This stops today!’ No more!”

In Tanika’s ‘aha’ moment, she recognized that hundreds of thousands of women’s lives are altered by fibroids. “We are suffering with this issue but we aren’t talking about it. People aren’t taking fibroids seriously. Where is the research? I was inspired to do something to help.”

white-dress_logo142x142That’s why she started The White Dress Project, an online community of women who share their experience and hope about life with fibroids. “The image of a white dress conjures so much anxiety and stress in women with fibroids. I took a fashion angle because I work in the media and I knew that this would be a unique way of telling the fibroid story.”

After her recovery Tanika took a business trip to China. On return, she visited Georgia State Representative, Alisha Thomas Morgan, who sponsored a resolution that passed through the Georgia House of Representatives in March 2014 declaring July to be Fibroid Awareness Month in the state. “This is the first accomplishment of The White Dress Project — it raised awareness in our state and was a first step in bringing fibroids into the national spotlight.” A year later, the states of Florida and New York, along with the city of New Orleans, adopted July as Fibroid Awareness Month. “We’re working towards having July be National Fibroids Awareness Month.”  See the petition at change.org

Tanika wants The White Dress Project community to grow! “Breast cancer is unified around a cause, and look what’s happened there; breast cancer awareness is at the forefront of every industry. The same can happen with fibroids!”

Through The White Dress Project women are starting to feel empowered. “They know that wearing a white dress won’t cure fibroids, but if we can rally together in a community, our voices will be heard. We can inspire women to be their own advocates, to connect, to become educated about genetics, research, fertility, treatment, and funding for additional research.”

Tanika is excited about participating in COMPARE-UF because there is so little useful information available.  She hopes to see conclusive evidence from the registry that can help drive legislation and medical research about fibroids and treatments. “If we get traction at the legislative level we can get Congress to see why this is so important. And then we can get some big funding to further the cause.”

She believes that through the results of the COMPARE-UF registry, people will be able to see the extent to which fibroids are affecting women, and develop a plan to move forward. She wants more studies like COMPARE-UF to investigate what happens if fibroids are detected earlier so that women can avoid invasive treatments.

…through the results of the COMPARE-UF registry, people will be able to see the extent to which fibroids are affecting women, and develop a plan to move forward.
And, she also believes that there isn’t enough funding going into discovering the cause of fibroids. “What is going on with so many women getting fibroids!? It’s ridiculous – this is an epidemic!”

“Today we wait until the fibroids are big and require invasive procedures. Through my experience I am aware that women need to be their own advocates. Too often we are passive and expect our doctors to be our advocates. Sometimes they are, and sometimes they aren’t. As patients, we need to be asking lots of questions. We need to know what’s going on with our bodies and when something doesn’t feel right, we need to take action. We need to monitor and journal our cycles and accidents. By participating in COMPARE-UF we are making a positive contribution to understanding aspects of today’s treatment options and furthering the cause of fibroid awareness.”

Tanika’s fibroids returned, and recently she had a hysteroscopy. “I don’t know what the problem is – things just seem to grow in my uterus!” Her periods are still heavy, and she still struggles with anemia. And she is on a strategic fertility journey. “Some women get pregnant quickly after a treatment, but I didn’t. So I continue. And thankfully, I’m not alone.”

 

# # #