A demand for connection among women with bleeding disorders
This year's LadyBugs conference revealed some sobering truths
When I walked into the LadyBugs conference in Salt Lake City last weekend, the energy was immediate: part reunion, part rally, and part safe space for women who understand life with a bleeding disorder. Hosted by the CHES Foundation, LadyBugs is a program for women ages 16 and older who live in the U.S. and either have a bleeding disorder or care for someone who has one. It involves education, advocacy, stress management, and, most importantly, community.
The name comes from the ladybug’s unusual defense mechanism: They bleed from their knees when threatened. It’s a fitting symbol of resilience.
LadyBugs began in 1998 when Barb Forss, newly diagnosed at age 47 with factor VII deficiency after years of being told “women do not bleed,” started a grassroots network for women like her. CHES took the program under its wing in 2016 and has built it into the vibrant gathering it is today.
An event in high demand
This year’s event, held Aug. 8-10 at the Downtown Sheraton in collaboration with the Utah Hemophilia Foundation, was so popular that more than 125 women were waitlisted. As Heather Case, CHES’s director of advocacy and outreach, wrote on the foundation’s website, “The tremendous response to LadyBugs speaks directly to an unmet need — females in this community are craving to be SEEN, HEARD, AND CONNECTED.”
In another post, Case noted how tough it was to turn people away, writing: “It felt unfair and sticky and, to be frank, super frustrating to be begging for the same amount of time and attention and funding as the conferences that support families and/or males.”
The weekend offered breakout sessions for hemophilia A and B, von Willebrand disease, and ultrarare bleeding disorders. I felt pulled to all three, but chose the hemophilia session because hematologist Danielle Nance was speaking. She’s one of the strongest advocates for women I know. Nance has hemophilia A herself, and that personal experience gives her an uncommon understanding of what women in our community go through.
More than a conference
Over the weekend, I met women with ultrarare factor deficiencies and platelet disorders who often lack the support networks others have. For them, CHES also hosts the One Drop conference in Tampa, Florida, created specifically for the ultrarare community. I was honored to attend last year’s event.
Other sessions made a lasting impression. Angela Kouri, a physical therapist, led a talk on joint health, and Amber Federizo, a nurse practitioner and tireless advocate, presented an OB-GYN session for premenopausal women. I was amazed by how much menstrual care has advanced since my own experience. Just as encouraging was hearing that the kind of uncontrolled bleeding I once endured — bleeding that led to my infertility — would no longer be brushed aside today.
By the end of the weekend, it was clear why LadyBugs matters so much. It’s not just an event; it’s a lifeline. It gives women with bleeding disorders the tools, confidence, and connections they need to take charge of their health and shape a better future for the next generation.
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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