Meet Sean, VP Warrior
“As someone who has experienced porphyria symptoms since childhood, I knew that life was never going to be ‘normal.’”
Sean has lived with porphyria symptoms since childhood, knowing that life would never be "normal" in the traditional sense. After being diagnosed with Variegate Porphyria in 2009, he had to forgo the typical path of attending college or working a traditional 9-to-5 job. Despite this, Sean didn’t let his condition define him. Instead, he pursued three unconventional roles that he never imagined before his diagnosis: scare actor at USA Today’s Best Halloween Attraction of 2021, minor league hockey columnist, and a position within Motorsports.
“Regardless of how porphyria impacts your life, always keep your head up and remain open to positive opportunities in the future.”
These roles not only allowed Sean to feel "normal," but they also provided a sense of purpose and the opportunity to stay healthy. Through these unique opportunities, Sean was able to connect with others, make new friends, and keep a positive outlook on life, despite the challenges posed by porphyria.
Sean’s story is a powerful reminder that even when life takes unexpected turns due to illness, there are still ways to find fulfillment. He emphasizes the importance of keeping an open mind and being receptive to positive opportunities that can arise in unexpected places. His journey shows that, while porphyria may impact his life, it hasn’t stopped him from living it to the fullest.
Sean and his wife, Melissa.
Above all, Sean wants others with porphyria to know that they, too, can overcome challenges and create their own opportunities for happiness and growth. His resilience and determination are truly an inspiration to all.
Want to share your story? Contact us at katri@porphyria.org
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