by David Wallace
Hi, my name is David, and I am a polycythemia vera (PV) warrior. PV is a rare blood cancer. To me, living with a rare disease is not just a medical journey; it’s a testament to resilience and the power of community.
Rare Disease Day, for me, is more than just a date on the calendar. It’s a beacon of hope and solidarity. It’s a day when our voices, often lost in the vast sea of mainstream health issues, rise and converge into a powerful chorus. It’s a reminder that while our conditions are rare, our experiences and struggles are incredibly real and shared by many.
What I want the world to know about me and about all of us in the rare disease community is that we are not defined by our conditions. We are advocates, educators, friends, and so much more. Our journeys with rare diseases have taught us the invaluable skill of self-advocacy, a skill that empowers us to navigate the complex healthcare system, to fight for our rights, and to educate others.
On this Rare Disease Day, let’s pledge to create a world more informed, empathetic, and equipped to support those living with rare diseases. Let’s spread awareness, not just to acknowledge our struggles, but to celebrate our strengths and our unyielding spirit.
Remember, every voice matters. Your story can be the key that unlocks understanding and compassion in someone else’s heart. So, let’s raise our voices and advocate not just for ourselves but for each other.
