With my clotting factor mixed, I started looking for a suitable vein. Just then, a commercial for Wounded Warriors caught my attention. I paused to watch, my heart swelling with admiration. “Now, this is something I can support,” I thought.
As I watched, I couldn’t help but reflect on the many individuals I know who resemble those soldiers—those who walk with a limp, rely on crutches or a wheelchair, or need a little extra help navigating the world, much like the brave veterans showcased in the commercial. Yet, there won’t be a campaign for those with hemophilia, a bittersweet realization.
Let me pause here to express my deepest gratitude for all who have served in the Armed Forces, protecting the values and freedoms I hold dear. Their sacrifices deserve every bit of recognition and support we can offer. I urge you to please reach out to a veteran or a local veteran service organization. It’s disheartening that they must spend money on commercials to garner our support.
Many of us with bleeding disorders, myself included, once dreamed of serving our country. I remember attending recruiting meetings when I was young and filled with hope—until I had to disclose my hemophilia. I would have proudly paid my dues as an American, just as countless others with bleeding disorders would have. In my heart, I believe that the injuries and pain endured in service to our nation would have been a badge of honor.
Yet, the pain that fills our days carries no such honor. We do not earn our scars on distant battlefields; rather, our battles manifest within us in ways often unseen. We face daily struggles involving bleeds, arthritis, synovial inflammation, and joint deterioration. For some of us, there are the added challenges of dealing with HIV/AIDS and hepatitis.
When my fellow blood warriors and I walk—or sometimes limp—down a hallway, there are no salutes or approving nods, no decorations of valor to acknowledge our silent struggles. But even in this, our fight holds its own kind of honor. Our battle is about becoming productive, contributing members of society—supporting ourselves, our loved ones, and our communities.
To my blood brothers and sisters, I honor you deeply—those who came before us and bravely ventured into new treatments, not out of convenience, but for the sake of progress in science. You were the courageous pioneers when our medications needed to be more effective and safe.
I salute those who remember whole blood, fresh frozen plasma, and cryoprecipitate—the trailblazers who lived “on demand,” with no prophylactic treatment offered, sometimes forced to prove their struggles before receiving the care they needed. You are not forgotten.
Many mentors from our bleeding disorders community have left us, but some have defied the odds and continue to inspire through their strength and tenacity. Many have emerged as leaders, lighting the way for others. Some may have stepped back but returned to fill crucial roles in our organizations.
I am profoundly grateful for the sacrifices made under circumstances that many in our community, thankfully and hopefully, may never have to face. Your examples of resilience are a treasure, and I appreciate everything done for us by our fore-brothers and sisters.
Though there may not be commercials or television ads highlighting our struggles, and the broader public might not fully grasp what we endure, I do. I see you. Let’s continue to strive to serve the greater good, even when our efforts go unnoticed.
As for my infusion, it took a while, but eventually the process was completed, ready to keep fighting the good fight.
Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program at LUX Infusion is here to help!
DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.
