Celebrating stories from the bleeding disorders community
Advocacy is paramount in the lives of these patients, their struggles ongoing
Beyond medical complexities, bleeding disorders illuminate inspiring stories of resilience, courage, and community strength. When we openly share our experiences, we educate others, combat stigma, and promote inclusion.
Bleeding Disorders Awareness Month in March is an essential opportunity to highlight the realities faced by those living with hemophilia, von Willebrand disease (VWD), and other rare bleeding disorders. In honor of this month, I’d like to share the stories of several community members whose journeys have inspired many, including me.
Wayne Cook: A liver transplant journey
Wayne’s journey embodies profound resilience. Living with hemophilia, Wayne faced additional hardship when he contracted hepatitis C from contaminated blood products during the tainted blood era — a painful legacy affecting many in our community.
His health recently reached a critical point, necessitating both heart surgery and a liver transplant. Last month, he received successful surgeries at the Cleveland Clinic, though he’s faced setbacks, such as a battle with cytomegalovirus, a known risk among transplant recipients. Thankfully, he’s recovering well and preparing to return home soon.
Throughout his struggles, Wayne received incredible support from friends, family, and fellow community members who rallied around him, and he continues to have a GoFundMe page. His openness has raised awareness about ongoing consequences from contaminated blood. His experience highlights the importance of community solidarity, advocacy, and continued vigilance regarding treatment safety.
Ashley Zebley: Advocating for women with bleeding disorders
Ashley’s story highlights the unique challenges women face within the bleeding disorders community. Living with familial hemophilia B, Ashley confronted significant barriers to accurate diagnosis and appropriate treatment because of the widespread misconception that hemophilia primarily affects men.
Through persistent advocacy, Ashley found her voice, becoming an outspoken figure dedicated to dismantling stereotypes about bleeding disorders in women. She recently shared that her advocacy efforts have benefited her daughter, who now receives prophylactic treatment to prevent joint complications — a hopeful outcome demonstrating the power of advocacy and awareness.
Shari Luckey: Empowerment through education
Shari, diagnosed with hemophilia B, also encountered obstacles rooted in misconceptions about women’s experiences with bleeding disorders. Turning these struggles into purpose, Shari now serves as education and program services director at the Hemophilia Foundation of Michigan, creating and supporting educational initiatives that empower others through awareness and advocacy.
I recently attended the 2025 VWD Symposium: Tools for Thriving, organized by Shari and her team. It was among the most impactful symposiums I’ve experienced, addressing often neglected yet vital topics such as aging and hypermobility. Shari’s dedication to educating and supporting community members has profoundly shaped the narrative around bleeding disorders, proving how one passionate voice can inspire widespread awareness.
Jennifer Hastie: Raising visibility for VWD 2B
Jennifer brings attention to von Willebrand disease type 2B, a rare and often misunderstood bleeding disorder. Her struggles included delayed diagnosis and limited treatment options — common experiences, especially for women navigating rare disorders.
By openly sharing her journey, Jennifer highlights the need for improved education and understanding, among both patients and healthcare providers. Her advocacy empowers others to speak confidently about their own healthcare needs. Jennifer’s experiences remind us that every diagnosis deserves recognition, which will foster deeper connections and ultimately improve care within the bleeding disorders community.
My own reflection
These stories resonate deeply with me, particularly after navigating the recent Hurricanes Helene and Milton, during which I grappled with the complexity of managing my hemophilia under emergency conditions. That experience reinforced the importance of community, preparedness, and advocacy.
Bleeding Disorders Awareness Month is more than simply acknowledging medical realities; it’s about celebrating resilience and interconnectedness. Together, by sharing our stories, we amplify our voices and ensure that no one feels alone in their journey.
This month, let’s honor the strength within our community by continuing to support, educate, and inspire one another.
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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