Theme Parks and Porphyria: Sean’s Story of Flexibility, Fun, and Flare-Ups at Universal
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Written by Sean Albright
Curated by Katrina Parra
Living with porphyria means learning how to balance joy with caution, especially in unpredictable settings like theme parks. UPA Ambassador and Variegate Porphyria patient Sean Albright recently visited Universal Studios with his wife Mellisa—and while a flare changed their plans, it didn’t ruin their weekend. Here’s how he made it work.
“Living life with porphyria requires balance between living life and taking care when porphyria flares up.”
-Sean Albright, VP patient.
Preparing for the Trip
Knowing the Florida heat was going to reach 90°F, Sean made a smart decision: he got an infusion the day before their trip to help stay hydrated and reduce his chances of a flare-up. He also came prepared with:
Ice bags and pre-cooled clothing
Medication for flare-ups
A hat to shield his face from the sun
Preparation gave Sean peace of mind—and a stronger start to his adventure.
Sean avoiding the sun at Universal.
Excitement Meets Caution
Sean felt excited and a bit nervous when he arrived at Universal. Before hitting the park, he and Mellisa fueled up with pizza and dessert—a full stomach before the fun.
They began their day in Sean’s favorite area: Jurassic Park, a lifelong favorite movie. From there, they relaxed and did some people-watching inside a restaurant—choosing moments of rest between activities.
Flare-Up Hits
Eventually, the signs of a flare began. Sean felt a burning sensation in his skin and abdominal pain—clear signs that it was time to pause.
They quickly returned to the hotel to rest. Room service, a movie, and quiet time gave Sean space to recover and manage symptoms.
Sean having a porphyria attack, while Melissa supports him.
Plan B: Rest, Recharge, and Joy Indoors
Instead of forcing more time in the sun, Sean and Mellisa embraced a new plan: a Nintendo Switch 2 game session, movies, and TV from the comfort of their room.
“It allowed me to recover faster,” Sean shared. “And it limited the damage from the flare.”
Sean feeling better.
Reflections and Advice
Emotionally, Sean felt a little sad about cutting the day short, but grateful he got to experience some of the park. The biggest lesson? Adjust your plans based on your body.
Sean’s story is a reminder that living with porphyria doesn’t mean giving up adventure—it just means approaching it differently. With preparation, support, and flexibility, joy can still be found in unexpected places—even when plans change.
“Don’t push yourself. Do everything in moderation.”
For more information on acute intermittent porphyria and managing symptoms, visit Porphyria.org or contact us at info@porphyria.org. We are here to support you in your journey.
Sean’s journey with variegate porphyria is one of resilience and hope. Despite the challenges of his condition, he’s found purpose, built meaningful friendships, and discovered passions like online car racing. Always eager to support the United Porphyrias Association, Sean is committed to raising awareness and inspiring others with porphyria to stay positive and create their own paths to happiness.
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