An Advocacy and Endurance Journey in Hemophilia A: Introducing Johnathan Duddleston
By Gregory Le Cleir, Deputy Director U.S. Advocacy Relations, U.S. Communications and Advocacy, Bayer U.S.
One of the privileges of working with Patient Advocacy is working directly with patients and patient organizations. The work helps to ensure people who are directly impacted by a condition, as well as those who care about them, are understood, respected, and considered in Bayer’s decision-making process.
In fact, ensuring this is central to Bayer’s commitment. Sometimes interactions with patients and patient organizations gives us insight into the individual journeys of people affected by a condition as they seek health equity and better health outcomes. In hemophilia, the patient community is very well organized, and advocacy is not only integral to its capacity building efforts, but also to protecting and advancing the standard of care.
Johnathan’s Story
I’d like to share a story of an individual who has been on a lifelong journey in hemophilia. His story touched me. I feel it is motivational and inspirational for all within the space and beyond. I was first introduced to Johnathan Duddleston as part of a global advisory panel to seek the perspectives of people with hemophilia and their caretakers on Bayer’s global offerings to this community. Johnathan was chosen to represent the perspective of someone from the United States.
Johnathan, a young man from upstate New York, is the founder of the Factor Endurance Network, a not for profit foundation that seeks to empower people with hemophilia and other inherited bleeding disorders. Part of that empowerment includes achieving whatever levels of activity they aspire to achieve and advocating for themselves as they interact with their comprehensive care teams. But how did he get there?
The Early Years
Johnathan’s journey starts about three decades ago, when he was first diagnosed with severe hemophilia A at the age of nine months. His family had no understanding of hemophilia. Johnathan’s hemophilia was the result of a genetic mutation and was uncovered after he had profound bruising from blood draw attempts. In fact, at the time, he was removed from his home because of suspected child abuse. One can only imagine the fear and confusion his parents and family endured at that time. As a result, his mother became incredibly protective of her son.
As a young boy Johnathan desperately wanted to feel normal and participate in daily activities that other young people were experiencing. Including sports. Fortunately, he became part of the hemophilia camp system and learned to infuse his prophylaxis regimen and became empowered to advocate for his wants and needs. Because of this and dialogues with his comprehensive care team, his parents saw he could do much more than was believed before. While he truly wanted to play football, it was agreed he could participate in soccer and other sports instead. And Johnathan excelled, becoming a very accomplished athlete. However, as often can happen, Johnathan’s involvement in the hemophilia community became less and less as he was transitioning into adolescence and beyond.
The Young Adult Years
During that break, Johnathan became more and more interested in endurance sports. He explored the potential for competing in triathlons, marathons, and iron man events. He further explored the value of muscular development to protect from joint damage and deterioration. This was also the time when a friend and mentor encouraged him to become more involved with the hemophilia community. Which he did! He started volunteering as a camp counselor and helped others to maximize that experience as they were learning to understand and manage their condition. But for Johnathan, this simply wasn’t enough. He wanted to be able to share his personal and endurance journeys with others to them to identify and then work towards their aspirations.
The Birth of Factor Endurance Network
Out of Johnathan’s desire to give back, the Factor Endurance Network was born. Johnathan conceived of, created, and recruited members for this foundation. The members of the network are also endurance athletes who are not people with hemophilia or rare conditions. Rather, they are allies who support the notion that all people can aspire to do more as they set and achieve their personal goals.
While the foundation does not promote that all people with hemophilia, or other inherited bleeding disorders, should go on an endurance journey, it does encourage that people with hemophilia can achieve their aspirations once identified to show that all are capable of more, despite their diagnosis. It promotes having an authentic dialogue with the care team about those aspirations. Whether the desire is to be able to play with your children more, ride a bike longer or simply be more active, it is important to be part of the shared decision-making process with healthcare professionals. Johnathan works to empower people with hemophilia to talk with their treaters in an open way to facilitate personalized therapy to meet their needs, whatever those needs may be.
And this work has now taken on a global footprint. Johnathan, in his global work, understood that health disparities exist based on access to care and treatment across the globe. He works to empower patients to change the standard of care in places where that need is greatest. Johnathan’s advocacy journey has allowed him to impact lives internationally and the foundation has given him a platform to help others in need.
Beyond the Factor Endurance Network to Ironman and More
In July of 2021, Johnathan reached an important milestone in his endurance journey as well. Johnathan competed in the Lake Placid Iron Man competition, which was his first. After multiple triathlons and his first marathon, this was an important goal he was striving to achieve. And his achievement was remarkable. Out of over 1,500 competitors, he finished in the top 20% overall, and his wife and two beautiful daughters were there to cheer them all on!
And Johnathan’s advocacy is not limited to hemophilia. Johnathan is advocating for people marginalized through disability in his professional work as well. As an investigator for abuse and neglect for people with developmental disabilities in the group home setting, he gives back to the community professionally. It has indeed been a pleasure to learn from him. I am motivated by his willingness to be a part of the global hemophilia community.
You can keep track of his evolving journey by friending him on Facebook and learning more about the Factor Endurance Network.
Website: Facturenduranenetwork.com
Instagram: @factorendurancenetwork
Facebook: Factor Endurance Network
