Finally, an in-person celebration of our community and ‘porphamily’
The recent PorphyriaPalooza was an opportunity to connect
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 United Porphyrias Association, where I serve as president, and was designed to promote connection, learning, and enjoyment.
We weren’t just patients, doctors, caregivers, and advocates; we were a family formed from shared struggles, victories, and an unspoken understanding. As we laughed, learned, and supported each other, a new term was born: “porphamily,” the perfect blend of porphyria and family.
Porphyria can feel isolating, but during this weekend, we saw the beauty of our community — the family we find and the friends we make because of this condition.
Meeting our porphamily
For many attendees, PorphyriaPalooza marked the first time they had met another person with porphyria in person. This disease, so often misunderstood, suddenly became something shared. One participant said, “I haven’t met anyone who has porphyria until coming here, and that means a lot. I feel important.”
That sense of belonging resonated throughout the weekend, from scheduled events to late-night chats in the 24/7 porphyria hub. People who have often felt like outsiders in their own lives found themselves surrounded by people who “get it.” There was no need for lengthy explanations or feeling like a burden for needing accommodations; everyone was in it together. For once, “normal” was right there with us.
The porphyria community gathers for PorphyriaPalooza in Chicago, in September 2024. (Courtesy of United Porphyrias Association)
As a mother of a son with erythropoietic protoporphyria, I know all too well the burden of isolation that this disease can bring — not just for the patient, but for the whole family. My son Brady was diagnosed at a young age, and our lives were shaped by his time limits in the sun, planning everything down to the minute. Being at PorphyriaPalooza and watching people just like Brady connect was nothing short of life-changing. The challenges we face are great, but we are not alone.
Sharing joy and challenges
We also took time to address the more serious realities that living with porphyria brings. Presentations and activities led by patients, caregivers, and experts alike filled each day. We heard from fellow patients on topics such as advocacy, employment, and nutrition. A Q&A session with Amy Dickey, MD, who is not only a porphyria expert but also a patient herself, was a highlight.
One of the most meaningful moments came during a session we called “Por-Fear-Ria,” where attendees anonymously shared their deepest fears about living with porphyria. From worries about losing access to treatments to concerns about the long-term impact of the disease on their families, the outpouring of vulnerability was both heartbreaking and uplifting. It was a powerful reminder that while our fears are real, we are not facing them alone.
While we didn’t shy away from discussing challenges, PorphyriaPalooza was also a weekend filled with joy. We kicked things off with a lively boat cruise down the Chicago River, and on Saturday night, the dance floor was packed as people of all ages sang their hearts out at karaoke.
For many, this weekend wasn’t just a break from daily struggles; it was a celebration of life and the connections that make navigating porphyria a little easier.
Expanding the porphamily
As we cherished the memories of PorphyriaPalooza, our global porphamily continued to grow even stronger at another important event — the International Congress of Porphyrins and Porphyrias (ICPP), which concluded last week in Pamplona, Spain. This biennial gathering brought together doctors, researchers, and patients to discuss the latest advancements in porphyria treatment and research.
The ICPP wasn’t just about scientific breakthroughs. It was also about the challenges still facing us, from diagnosing rare porphyrias to improving mental health support. These issues highlight the ongoing need for research and collaboration to ensure that every person with porphyria can lead a better, fuller life.
PorphyriaPalooza and the ICPP show us that we are not alone, and that our future is bright. Whether it’s gathering in person to celebrate and support each other, or coming together at international conferences to push for better treatments, our porphamily is united. There is still work to be done, but together, we can make progress.
I can’t wait for the next gathering to make more memories, share more stories, and continue building this incredible community. Thank you for being part of my porphamily. Together, we stand stronger, ready to face whatever comes next.
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.
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