#89 Living Beyond the Shadows: Life with Erythropoietic Protoporphyria
For most people, stepping into the sunshine is an ordinary part of life. For Craig Leppert, even a few minutes of sun exposure can cause severe pain and swelling.
Craig lives with erythropoietic protoporphyria, or EPP, a rare genetic condition that causes extreme sensitivity to light. Born in Hawaii, raised on the Jersey Shore, and now working in the television industry in Los Angeles, Craig has spent much of his life planning around the sun.
In this episode, Craig joins hosts Cathy Gildenhorn and Beth Glassman to share what growing up with EPP was really like, how the condition affected his relationships and everyday choices, and why its often-invisible pain can be so difficult for others to understand.
Craig also discusses founding Shadow Jumpers in 2017. The nonprofit supports individuals and families with photosensitive conditions through sun-safe vacations, home renovations, protective clothing, medical assistance, transportation, and community programs.
In 2024, Shadow Jumpers launched Sun Escape, a free annual weekend camp where photosensitive families can enjoy activities including horseback riding, archery, zip lining, and water park access in a carefully sun-safe environment.
Craig also reflects on participating in a clinical trial of bitopertin, an investigational treatment for EPP, and what it felt like to spend hours outside without the severe pain that had shaped his life.
In This Episode, We Discuss
Craig’s earliest experiences with painful sun exposure
What an EPP reaction feels like
The childhood experiences and social events he missed
How EPP affected relationships, travel, work, and daily planning
Why Craig founded Shadow Jumpers
The practical support the organization provides to families
How Sun Escape creates a safe and joyful camp experience
Craig’s experience participating in a bitopertin clinical trial
His reaction to the FDA’s decision not to grant accelerated approval
Finding resilience, purpose, and community through advocacy
Craig’s message to children with EPP and their parents
About the Guest
Craig Leppert is the founder of Shadow Jumpers, a nonprofit supporting individuals and families affected by EPP and other photosensitive conditions through programs including Sun Escape, family assistance, protective clothing, and sun-safe experiences.
Craig’s diagnostic journey was featured on Discovery Channel’s Mystery Diagnosis in the episode “The Boy Who Kept Swelling,” and he later appeared with his family on The Dr. Oz Show. His life with EPP and advocacy through Shadow Jumpers were also recently featured in People.
Resources
Shadow Jumpers:shadowjumpers.org
Instagram:@shadowjumpers_
Facebook:Shadow Jumpers
People feature:Read Craig’s story
United Porphyrias Association: Education and support for people affected by EPP and other porphyrias
Bitopertin was previously studied as a potential treatment for schizophrenia but was never approved for that condition. It remains investigational and is not currently approved for EPP.
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It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Kira Dineen of Gene Pool Media serves as Executive Producer.
For questions, guest suggestions, or other inquiries, contact us at ItHappenedToMePod@gmail.com.
