“You can go with them,” I told my husband, Daniel, as I lay in the hospital bed. “Go where?” he asked. “Out the window,” I responded. Considering we were on one of the top floors of the hospital, Daniel was very confused. Anyone would’ve struggled to grasp what was going…
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…
This column describes the author’s own experiences with several medicines. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I was 23 and in a relationship with my eventual husband, Daniel. At the time, we weren’t ready to have a baby,…
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…
I love you. I can’t stand you. Please don’t leave. I just want to be alone! These conflicting emotions all happened within a matter of minutes. That was red flag No. 2. Severe abdominal pain with nausea and vomiting were red flag No. 1. As an in-home caregiver from western…
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…
When my acute hepatic porphyria (AHP) diagnosis was still fresh, my missing enzyme was to blame for everything going wrong. I didn’t yet know the timeline of my treatments, or how symptoms would ultimately impact my plans. My heart was an anvil, an impossibly heavy chunk…
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,…
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