From the Shadow to the Light A Journey Into Catharsis through Patient Advocacy

by Robert McDonald, Patient Advocate and Partner

With new treatments and innovations in hemophilia care and bleeding disorders, we’re finally turning a corner. It’s been a long time coming, and for patients like me, the road to get here hasn’t always been easy.

The Beginning

I was diagnosed with Severe Hemophilia A at birth in 1979, a time when the management of bleeding episodes was very different from today's standards. Treatments were reactive rather than preventive—they were administered only after bleeding episodes occurred and always required a visit to the hospital. Each treatment involved delays: waiting to be admitted, being evaluated, waiting for the doctor to arrive, requesting treatment products from the lab, and finally receiving the infusion. This process often repeated itself several times a week and even more frequently during severe bleeds that required ongoing follow-up treatments.

These were the days of treatment products like cryoprecipitate and whole blood transfusions, options that were far from ideal. It was also a time marked by fear, shame, and isolation. Having hemophilia was something to hide—a condition best kept in the shadows.

Then the 1980s ushered in a devastating crisis for the hemophilia community: the tainted blood supply scandal. Thousands of hemophiliacs and others who received contaminated blood products were infected with HIV and Hepatitis C. The scandal and headlines led to widespread ignorance, causing fear of individuals with hemophilia. Peers would say, “Don’t touch him, he might bleed and die,” or would panic over a nosebleed, checking themselves for contact with my blood.

This period left a profound impact on those already facing the challenges of a bleeding disorder.

In The Shadows

Though I was too young to remember, my mother recalled my parents' fear when they learned from the hemophilia clinic and Health Canada that I’d received blood products from the same lot number that tested positive. Miraculously, I didn’t contract HIV. For that, I was, and still am, grateful everyday. I wasn’t so lucky with Hepatitis C, which I contracted when I was a teenager. As a young adult trying to carve out my identity, this was another reason to stay silent and invisible.

During that time, self-doubt and shame shaped much of how I saw myself. I felt defective, like a burden on my family. There were moments—long hospital stays, for instance—when I saw the toll my condition took on them, especially my mom, dad, and sister. It was heartbreaking. My parents, however, were relentless in teaching us resilience. That mindset shaped the way I confronted adversity and pushed forward, even when things felt overwhelming. 

A Shift on the Horizon

As I grew and learned to navigate life with hemophilia, my perspective began to change. I didn’t shy away from being active. Like most kids, I wanted to run, tackle, climb, and play hard, but for me, those choices often came with consequences: painful bleeds and massive bruises. I remember trying to will the bleeding to stop through sheer determination, desperate to feel normal. And when I was told, “You can’t do this” or “You shouldn’t play that sport,” it only ignited my defiance. I became even more determined to prove to the world—and to myself—that I was unstoppable, capable of everything my peers could do. It worked for a while—until the inevitable bleeds reminded me that reality had limits.

It was during this period that hemophilia treatment began to shift, opening a door to hope. Prophylactic treatment, which involves preventive infusions rather than reacting to bleeds after they occur, was gaining traction. This innovation was just the beginning – we now have gene therapies, stem cell therapies, subcutaneous infusions and factor level stabilizers. There are many amazing new developments in the treatment and care of hemophilia and for people with bleeding disorders.

Now I’ve got such a great team at the hemophilia clinic at McMaster University Hospital. They have been amazing in advocating for me, pushing me to be disciplined in my prophylaxis and responding to my inquiries about new technology and treatment options. I started to feel confident that it was time to step into the light.

Into the Light

I feel a deep sense of responsibility and need to give back. I do that by participating in clinical trials, advancing care for future generations and bringing us closer to the possibility of a cure. In addition, with the encouragement of friends and family, I’ve begun sharing my story publicly as a guest speaker at events and connecting with parents and children.

Time to step into the light.

My journey as a presenter began when I was invited to share my story at a Hope Charity event. The focus of my talk was to recount my personal journey with hemophilia care and treatment over the years. I was genuinely surprised by the number of people who approached me afterward to connect. They shared personal stories, asked questions, and spoke about moments in their lives that paralleled something I had mentioned during my talk. 

As patients, advocacy can begin at any stage of our journey. For me, sharing my experiences has not only been a privilege but also a powerful source of emotional release and healing.

Time to step into the light.

Looking back, I’m proud of how far I’ve come—from carrying so much shame and hesitation to now sharing my story with openness and vulnerability. If even one person feels seen or empowered to speak up because of my journey, then that alone makes it worthwhile.

I’m eager to keep walking this path in advocacy, connecting with the community, bridging gaps, and ensuring the patient’s voice is heard when it comes to our health and care.

Time to step into the light.

I’m just beginning this new chapter, and though I don’t know where it will lead, I embrace the adventure. Fortune favors the bold—and my, what an exciting time to be alive!