#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
• Video: Watch “The Boy Who Kept Swelling”
• 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.

Connect With It Happened To Me Podcast

 

Stay tuned for the next episode of It Happened To Me. In the meantime, explore our previous episodes on Spotify, Apple Podcasts, YouTube, ItHappenedToMe.com, or your favorite podcast platform by searching for It Happened To Me.

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.