To celebrate World Hemophilia Day 2021 (April 17), Takeda is highlighting the stories of hemophilia “Rare Stars” to honor inspirational members of the rare bleeding disorders community. Through this campaign, we share the experiences of two individuals. Their powerful stories demonstrate character and exceptional fortitude in the face of challenges, and they embody the resilience and strength of the wider hemophilia community, especially in a year where the world has had to adapt to significant change.
Rare is strong. Rare is proud. Rare is many. Rare is resilient.
We sat down with Patrick Lynch, an award-winning filmmaker and media professional whose experiences of living with hemophilia continue to be a fundamental resource for fellow bleeding disorder patients around the world. Patrick’s work includes his role as Founder, Chief Content Officer, Host and Producer for BloodStream Media, a podcast network committed to patients and families affected by rare bleeding disorders.
What is the significance of World Hemophilia Day for you?
For me, World Hemophilia Day is the perfect excuse to tell everyone I know the story of hemophilia - this compelling little rare disease that does not define who I am, but that certainly has shaped my experience of life in this world.
Tell us about your relationship with hemophilia and how it has impacted your life.
I have severe hemophilia A and a tolerized inhibitor. Hemophilia has impacted my life in the most profound ways. It's caused me pain and taken my loved ones, it's taught me resilience and prioritization, it's given me empathy and respect, and it's driven me to exceed expectations and defy odds. Hemophilia doesn't define me, but it sure has shaped most of what matters in my life, and for the most part - for the better.
...patients like me are now capable of living rich, full lives without the constant pain and setbacks brought on by untreated bleeding. I've been able to move to a new state from where I was born, build a business from scratch, and start a family. I still need to manage severe hemophilia, but the limitations it places on my life these days are minimal.
How has the COVID-19 pandemic affected you as someone living with hemophilia?
As a result of the COVID-19 pandemic it has been over one year since I've been in the same room as someone else with hemophilia.
Yes, social media, online platforms and my smartphone have helped me to stay connected, but it's felt like a time when my relationships have been "on ice", rather than one during which they have grown or developed in meaningful ways. I miss seeing and hugging my friends, my blood brothers, my community. I miss the hallway conversations during patient meetings and the laughs I'd share with others over after-hours drinks. I miss physically being in rooms with people who "get it." I miss hearing their stories and struggles and discovering what those insights compel in me. I miss checking out the various educational programs to see what new piece of information pops out to me and to considering how I may be able to help disseminate those critical messages.
I must also admit that I put on weight during the pandemic, which led to more breakthrough bleeds and arthritic pain in my weight-bearing joints. In some ways, the stillness brought on by COVID-19 has forced me to re-evaluate some of my self-care practices, as well as being honest with myself about the areas I was neglecting when life was moving at a faster pace. I'm grateful for that.
What have you seen the hemophilia community do in 2020 that has inspired you?
More than anything, I've been impressed with and inspired by the energy and creativity that's come from leaders at patient organizations as they had to evolve and adapt all of their offerings to patients and families. There's been a wide array of virtual events and remote learning opportunities, and while many of us, myself included, have been managing "Zoom fatigue" for some time now, each new idea that's been executed has given people an opportunity to connect, learn, and grow.
More specifically, I've been impressed with the number of COVID-19-related workshops, webinars, and communications that've come out of the National Hemophilia Foundation and the Hemophilia Federation of America. In spite of the uncertainties, the leadership of this community has been vocal and out-in-front throughout the pandemic. I'm proud to belong to such a proactive community.
Tell us about the significance of World Hemophilia Day for you.
World Hemophilia Day takes place each year on April 17, the birthday of World Federation of Hemophilia (WFH) founder Frank Schnabel. It serves as a reminder that hemophilia affects patients and families all around the world, not just in the United States. While there is still much work to be done to bring equity and access to the hemophilia community all around the world, I like to think about what having hemophilia must've been like in 1963, when Frank Schnabel founded the WFH. There was no clotting factor concentrate available yet and people with severe hemophilia, like me, experienced many painful and prolonged bleeding episodes, a much more limited quality of life, and generally passed away before age 30.
Fast forward 58 years to 2021, where patients like me are now capable of living rich, full lives without the constant pain and setbacks brought on by untreated bleeding. I've been able to move to a new state from where I was born, build a business from scratch, and start a family. I still need to manage severe hemophilia, but the limitations it places on my life these days are minimal.
There are treatment options to provide people like me with the baseline for good health, and this community is filled with strong advocates who work diligently to protect our access to critical medications. I feel incredibly fortunate to have been born where I was born, when I was born, and I'm fascinated by "the story of hemophilia" across the last 60 years, or so.
To keep up with Patrick and his work visit www.bloodstreammedia.com.