By Deb Burrows, BS, MA
A panel of women gathered together during the 2023 BDC to share their stories and learn from one another during the session, Women with Bleeding Disorders: A Lifetime of Experiences. Joana Baquero, author and speaker; Gabi Flores, National Youth Leadership Institute, NBDF; and Patti Williford, NBDF, comprised the panel.
Baquero shared her experience growing up with afibrinogenemia, FI deficiency, a rare bleeding disorder that affects one in a million people around the world. Born in Colombia, her umbilical cord did not heal. Her doctors were knowledgeable enough to test her since her older brother already had been diagnosed with the same deficiency.
She was put on birth control pills at age 13 and didn’t stop taking them until age 35, when she was diagnosed with breast cancer. “I got my third period at age 35,” she said. “I’ve had a total of seven intracranial bleeds, and I do prophylaxis two days a week.” She makes the most of that time, using those four hours twice a week as “me time” and time to be with her husband.
She said she gives her physicians grace when they can’t answer all of her questions. “I have become the expert of my bleeding disorder. I’ve been learning along the way with my healthcare providers and my team. What we learn can, in turn, help others.”
Noting that there is nothing written about F1 deficiency and menopause, Baquero said that she knows she cannot control the future. “I live each day and don’t get anxious about something I don’t know about.” She concluded by encouraging women to ask questions and to “be assertive and fight for you. Believe in yourself and embrace your uniqueness. Cherish every experience.”
Flores lives with a qualitative platelet disfunction. Tests for hemophilia began at age 11, but it took three years to get her diagnosis. “I was relieved when I had a validation of my diagnosis. In 7th grade I had a six-month-long period,” she said. “My mother taught me to advocate for myself.”
She has made a few adjustments in her everyday life, such as keeping clothes and extra supplies everywhere. “I love to hike in Colorado, and so I made a specialized first aid kit to take with me. When I played soccer, I was taking a medication that made me watch my water intake. I eventually had to stop playing soccer in college, because all that is available for treatment is platelet transfusions and it became too dangerous.”
She told the audience to listen to their bodies. “If you feel something is not right, get support,” Flores said. “Find a support group. Don’t be afraid to tell your doctor ‘No’ or to fire them.” She added that women also need to “educate your dads and your brothers.”
Williford said her story includes a FXI deficiency. “Physicians denied that I could have joint bleeds with my diagnosis. I was and put on birth control and am still on it.” She said that she wasn’t prepared for the kind of periods she would experience. “I’m 25 and no one has yet talked to me about pregnancy with a bleeding disorder.”
She closed by suggesting that women “really lean into this community and not be afraid to have tough conversations with each other.”
