When we came together for PorphyriaPalooza in Chicago, Sept. 13-15, we knew we were onto something special. More than 100 of us, spanning the ages of 7 to 70 and representing 26 states and three continents, gathered to celebrate our porphyria community. The event was organized by the…
Pain is a complex and deeply personal experience that defies easy descriptions. It binds us all in a shared human condition. For those living with porphyria, pain isn’t just a symptom; it’s an overwhelming and often misunderstood aspect of daily life. I’ve watched my youngest son struggle with…
There’s a certain magic in watching our children transform as they gain experience and grow older. At 3 years old, my youngest son, Brady, was diagnosed with porphyria. His disease causes debilitating pain when he’s exposed to the sun, which significantly affects his quality of life. This…
Living with erythropoietic protoporphyria (EPP) can be a profoundly isolating experience — not just physically because of porphyria symptoms and the requisite avoidance of sunlight, but emotionally and mentally as well. That’s the often-overlooked psychological landscape that children, like my son, navigate daily because of their chronic conditions.
“Hope in Action,” the name of this column, stems from a motivating quote I heard early in my advocacy. My son Brady had recently been diagnosed with erythropoietic protoporphyria, a rare disease that impairs his ability to tolerate sun exposure. Hungry for information, I attended a seminar at…
Because my son Brady grew up with erythropoietic protoporphyria (EPP), a rare condition that causes extreme sensitivity to sunlight, finding a safe space where he could just be a kid meant everything to me. EPP means that even brief exposure to sunlight can cause severe pain, making typical…
Navigating the world of porphyria is a journey filled with learning, resilience, and the collective wisdom of countless patients and families who’ve walked this path before. My journey into the world of porphyria didn’t begin in a doctor’s office, but rather through the experiences of my son Brady,…
“Start where you are. Use what you have. Do what you can.” The words of that popular quote, which has several variations, echo a powerful sentiment that resonates especially well within the rare disease community. As we approach Rare Disease Day on Feb. 29, which falls on…
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…
Life’s like a pickup basketball game — you never know when a twist or turn might change everything. That’s the lesson we learned a couple of weeks ago with my son Brady, a freshman at Syracuse University who navigates life with erythropoietic protoporphyria (EPP), a rare condition that’s always…
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