Coalition for Hemophilia B women’s retreat was full of highlights

The Coalition for Hemophilia B held its annual women’s retreat Nov. 14-17 in Alpharetta, Georgia. Initially scheduled for September, the event was postponed due to Hurricane Helene. Despite the delay, the retreat was worth the wait, and I was honored to attend. Since September, I have proudly served as the communications director for this remarkable nonprofit organization, which continues to inspire me with its work.

The retreat offered a perfect balance of education, connection, and rejuvenation. Mornings began with movement, including dance and stretching sessions that set a positive tone for the day. One memorable outing took us to a picturesque farm, where we learned about tea blending in a beautiful outdoor setting — a refreshing and grounding experience for everyone.

The program also included impactful sessions on shared decision-making, family connection, and the sisterhood circle of unity. These discussions encouraged open dialogue, offering tools and strategies to navigate life with bleeding disorders while fostering a sense of togetherness.

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Powerful roundtable discussion

I facilitated a session called “Women Bleeders Roundtable: From Misdiagnosis to Advocacy and Empowerment.” Joining me was Ashley Zebley, whose powerful hemophilia story I have shared in this column before. Together, we guided an intimate and heartfelt conversation.

Typically, sessions such as this begin with an icebreaker exercise. One thing I’ve learned about women with bleeding disorders is they don’t need traditional icebreakers. These women have lived through challenges and want their voices to be heard. They are anything but quiet. Ashley and I knew we could jump right in, and the conversation flowed naturally.

Ashley courageously shared her experience of hemorrhaging after thyroid surgery. She recounted the despair of accepting she might die from her bleeding, undiagnosed and unheard, hoping only that her death might serve as a wake-up call for the medical community. Sadly, this sentiment is one I’ve heard too often — and even echoed myself during dark moments when my treatment fell short, and no one seemed to listen.

Yet amid the stories of frustration and pain were narratives of triumph. Several women in the group had successfully navigated the hurdles of diagnosis and treatment, demonstrating the progress that has been made. Their experiences provided hope and a sense of possibility for others still struggling to be heard and treated.

As the retreat concluded, I felt an overwhelming sense of belonging, acceptance, and support. The women participating were kind, compassionate, and determined to lift each other up. We share a unique bond forged by our common experiences — a bond that is unbreakable.

Thanks to Pfizer for its generous support, which made this incredible event possible. This retreat reminded me how far we have come as a community and how much further we still have to go. Together, we are stronger, and together, we will continue to make our voices heard.

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.