In advocating for porphyria patients, I start each day with gratitude
Our community's stories drive me to keep learning and leading
My days often start with a short, guided meditation. With a brain that’s always on the go — making plans, moving forward, synapses constantly firing — starting with a few minutes of calm helps me set an intention and tone for the day. Today, my intention is gratitude.
I’m especially grateful that the United Porphyrias Association (UPA), the nonprofit where I serve as president, just celebrated its second anniversary. These two years of success in patient advocacy are a testament to the unity and dedication of our community. The association has become not just a platform, but a community, a collective voice for those who are often unheard and just trying to manage their own life with porphyria. It’s a role that has blended the personal with the professional in ways I never imagined.
My journey began with my son Brady, who introduced the rare condition of erythropoietic protoporphyria (EPP) into our lives. His diagnosis changed how we managed our time and opened my eyes to the world of rare diseases, specifically porphyria.
Watching Brady navigate life with EPP has been both heart-wrenching and inspiring. It has been a journey of constant vigilance, of learning, adapting, and advocating. But I’ve always known that we’re not alone. There are others, each with a unique story of struggle, resilience, and hope.
The stories that drive us
Becoming a caregiver for a child with EPP meant learning to navigate a world where sunlight, something so fundamental to life, had become a source of profound pain and fear. This experience led me to step into the role of a patient advocate and leader — a role that was less of a conscious choice and more of a natural progression, a calling that grew louder with each story I encountered.
In this role, my days are filled with the echoes of countless stories from patients with all types of porphyria — their challenges, small victories, and evolving needs. These stories serve as a constant reminder of the impact of our collective efforts and the importance of the work we do, as well as the need to do even better for all patients.
Certainly, this journey has its complexities. Advocacy is as much about navigating differing opinions and fostering unity as it is about championing a cause. It’s about finding common ground, even when the ground seems to shift beneath your feet. Yet, it’s these very challenges that underscore the importance of our mission and the need for a steadfast commitment to our cause.
Today, reflecting on the journey thus far and the road ahead, I’m filled with a sense of gratitude and purpose, and a deep feeling of momentum. The challenges, successes, and needs of patients like Brady aren’t just part of my job; they’re integral to my life’s narrative. They drive me to push forward, to continue advocating, learning, and leading.
As I look forward to another year with the United Porphyrias Association, my heart is filled with anticipation for the stories we will share, the challenges we will face, and the victories we will celebrate. This journey, born from the deepest love for a child and nurtured through the stories of many, continues to be a source of profound personal and professional fulfillment. Thank you for trusting UPA with your journey.
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.