Connection is vital for women in the hemophilia B community
Stories shared at a recent retreat highlighted some important truths
A few weeks ago, I spent a long weekend at a women’s retreat hosted by the Coalition for Hemophilia B in Stone Mountain, Georgia. Years ago, I attended the iconic laser show at Stone Mountain and have always wanted to return. I was thrilled to find out the show was part of this year’s retreat agenda.
As communications director for the coalition, I had the privilege of facilitating a group discussion with women who either have hemophilia B or experience bleeding symptoms due to being carriers. As they shared their stories, several moments struck a deep chord with me.
Sharing our stories
Multiple women described harrowing situations in which their children were mistakenly given factor VIII instead of factor IX during emergencies. Hemophilia B, the less common form of hemophilia, requires treatment with factor IX. Unfortunately, because the majority of people with hemophilia have hemophilia A (factor VIII deficiency), this error remains all too common.
Their experiences reminded me of a time in my own life when my doctor advised me to describe my condition as a “factor IX deficiency” rather than using the term hemophilia. My medical ID bracelet and treatment letter both reflected that language. Back then, I assumed this was because women weren’t believed to have hemophilia. But hearing these stories makes me wonder: Does that perception still persist today? Perhaps, even now, using the term “factor IX deficiency” remains the safest option in medical settings.
I manage my bleeding disorders — von Willebrand disease and hemophilia B — on demand. That means I start an IV and infuse myself only when I’m actively bleeding or preparing for a medical procedure. Several of the women in our group, however, treat prophylactically, infusing factor on a regular schedule to prevent bleeds before they start. Without hesitation, they emphasized how much better their bodies feel on prophylaxis. They reported fewer episodes of joint pain and overall soreness, a powerful testament to the benefits of preventive care.
On the other end of the spectrum are women who experience significant bleeding but aren’t prescribed any factor at all. Some have baseline levels even lower than mine, yet they don’t have so much as an emergency dose in their refrigerator. A few quietly admitted to using their sons’ factor to treat themselves when things got bad. That reality still weighs heavily on me. It’s heartbreaking that even today, some women are still forced to choose between suffering in silence or borrowing treatment meant for someone else.
Women need more support
Women in the bleeding disorders community need more support. Caring for a child with hemophilia is demanding — physically, emotionally, and mentally. That stress is magnified for parents of children with inhibitors, which make treatment far more complex and unpredictable. Now imagine managing all of that while simultaneously fighting for your own diagnosis, recognition, and access to treatment. It’s an overwhelming burden, one that too many women are still carrying alone.
I left the retreat with an overwhelming desire to help create more spaces like this, where women with bleeding disorders can connect, share, and be heard. Kim Phelan, CEO of the Coalition for Hemophilia B, shared that a virtual women’s support group is in the works, and that’s wonderful news.
Although the laser show was rained out and I brought home the unexpected “parting gift” of COVID-19, the retreat itself was everything I’d hoped for and more. I left feeling more connected to my community and more motivated than ever to continue advocating alongside the powerful, inspiring women who are walking this journey with me.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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