Hope Through Blood and Plasma Donations: My Journey with Von Willebrand Disease

By: Darlene Kiyan, President & CEO, St. Barnabas Senior Services

October 6, 2025

Growing up with von Willebrand disease (VWD), a rare inherited bleeding disorder, meant living with constant uncertainty. VWD occurs when the body doesn’t make enough of or makes a faulty version of von Willebrand factor (VWF), a protein essential for blood clotting. When I was a child, very little was known about how to treat it, and doctors often struggled to find the right approach. This often led to delayed care or prolonged bleeding from something as simple as a cut, a nosebleed, or a dental procedure.

One experience that still stays with me happened at the dentist. Fearing that local anesthesia could trigger uncontrollable bleeding, my dentist refused to use it and performed a filling without pain relief. It was excruciating—a trauma no child should ever endure.

Experiences like that made me hesitant to share my condition. Worried they wouldn’t treat me, wouldn’t believe me, or that I simply wouldn’t be able to afford the medicines I needed, I would hide my condition from medical providers. Too often, I put my health at risk just to receive care. At home, my parents—terrified I might get hurt—kept me from playing sports or joining activities. This made me feel different, held back by something completely outside of my control.

Thankfully, treatments for VWD have come a long way. Today, there are more options for managing this condition, including platelet transfusions and plasma-derived medicines (PDMs). While I currently only receive platelets after trying various types of medication to identify the best treatment for my platelet -type VDW, I recognize the power of plasma, as others in my family members who also have VWD use it to receive VWD factor and Factor VIII that help control bleeding.

For people like me, the generosity of blood or plasma donors can mean the difference between a dangerous, life-threatening episode and living a more normal life. Every donation makes it possible for individuals living with complex and rare conditions to live longer, healthier lives. Still, awareness, timely access, and affordability are just as important, as these treatments can only make a difference if they are available when needed.

This belief is part of why I’ve dedicated my professional life to advocacy. Now, as President and CEO of St. Barnabas Senior Services, I work to empower older adults to live well, feel well, and age well in a community with dignity and respect. Throughout my personal life and professional career, I’ve seen how essential advocacy, community support, and equitable access to care are, not just for people with bleeding disorders, but for anyone navigating health challenges.

Living with von Willebrand disease has shaped who I am, but it does not define me. By sharing my story, I hope to raise awareness about the importance of blood and plasma donations, and to remind us all that access should never stand in the way of life-saving care.