Meet Craig, EPP Warrior
By Craig Leppert
"I began screaming and scratching at my face and hands. My grandma later remarked that I sounded like I was on fire."
-Craig, EPP patient.
My name is Craig Leppert. I was born in Hawaii, raised mostly on the Jersey Shore, and currently live in Los Angeles. Given my experience living with Erythropoietic Protoporphyria (EPP), I certainly haven’t made the smartest choice in where I call home.
Shortly after my birth, we moved to Maryland, where I first exhibited symptoms of EPP. However, it would be four more years before we heard that term from a doctor, (and another thirty before I could pronounce it correctly). While my parents were away, my grandparents set up a kiddie pool for me outside our apartment. Almost immediately, I began screaming and scratching at my face and hands. My grandma later remarked that I sounded like I was on fire.
She took me indoors for a cold bath, checked for a fever, and looked for bites or rashes, nothing. There were no clear answers. The next morning, she woke up to find my hands incredibly swollen and disfigured, resembling small boxing gloves that I couldn’t bend or move. From that moment on, my life the next few years was filled with doctors proposing various theories about my symptoms. Some suggested it was the detergent in my clothes, while others speculated it could be chlorine and one doctor even thought I might be allergic to the hydrogen in the air (it's frightening to consider where that doctor is practicing today).
“It didn’t matter if we had to cover ourselves from head to toe; not participating just because the sun was out was never an option.”
-Craig, EPP patient.
Our fortune changed when we moved to New Jersey. The pediatrician we randomly selected had just returned from a conference where maybe ten minutes total were dedicated to disorders like mine. A few weeks later, after conducting several tests, we finally received a confirmed diagnosis. Although the diagnosis was mine, it felt like it affected my entire family. EPP is a disorder that impacts every member of the household, not just the child diagnosed.
My mom often recalls that when she received the news about my EPP diagnosis, she rushed to the library, only to find a single paragraph in one medical textbook discussing it. Imagine being a parent reading in a complex medical journal that your son might not experience all the things you had envisioned during those nine months of carrying him: summer camps, beach outings, amusement parks, high school sports, graduations, and riding bikes around the neighborhood. It’s understandable to feel overwhelmed. On top of that, the realization that this condition is genetic adds to the weight of it all.
After my sister Nicole was born three years later (and diagnosed with EPP too) my parents, despite the challenges, committed to providing us with as traditional a family upbringing as possible. It didn’t matter if we had to cover ourselves from head to toe, start activities later in the evening, or feel a little awkward; not participating just because the sun was out was never an option.
Craig as a child, outside in the sun wearing protective clothing.
During high school, our family was featured on the Discovery Channel show Mystery Diagnosis where I was affectionately dubbed “The Boy Who Kept Swelling.” The success of that episode led us to be among the first guests on the Dr. Oz show. What made being on TV during those years impactful was the chance to connect with others in the EPP community (mostly online, like on Facebook) and realizing how differently I viewed life with this disorder compared to many others.
I was struck by how unique my family’s perspective on EPP was compared to those who had reached out hoping to connect. It was incredibly frustrating to be part of certain Facebook groups and discussions where people sought sympathy and justification for giving up on life’s moments and career choices, simply out of fear they might have a reaction or appear different in public.
Fast forward to last October 2024, I found myself in a conference room participating in an icebreaker exercise with other EPP patients during the United Porphyrias Association’s Porphyria Palooza weekend in Chicago. We were asked various questions, and the group would move from one side of the room to the other based on whether they resonated with the question. When the question about feeling abandoned or alone because of our photosensitive porphyria condition was posed, everyone HUSTLED to the other side, except for me.
Craig at Sun Escape Weekend 2025.
Many of my fellow EPP’ers turned to see me standing alone, likely thinking I was trying to stand out or draw attention. But I was being completely honest. I have never felt alone on my journey with EPP, nor have I felt abandoned, because I have always had myself, I have always showed up for myself in the toughest and most isolating moments of living with this condition.
I consider myself incredibly fortunate to have been born with EPP. This form of porphyria has provided me with countless opportunities to discover who I truly am. We have limited chances in life to see what we are made of. When challenged by extreme circumstances, can you rise to the occasion and keep moving forward? My life, described as being ‘allergic to the sun,’ has instilled in me a sense of drive and mental toughness that I cannot imagine living without. It has also taught me compassion and patience for others, two qualities I take immense pride in.
I will forever do more good in this world and for far more people (both in my photosensitive community and outside it) because I was born with EPP. How could you do anything but love your condition when you think of it that way? It is also incredibly cool to have real creditable comparisons to being a vampire.
“My hope is that through Shadow Jumpers’ support, our summer camp, and our expanding online community, no one ever feels alone or abandoned because of their EPP again. ”
These beliefs and an incredible upbringing inspired me to establish the organization Shadow Jumpers in 2017. Our mission isn’t to cure photosensitive conditions (we have fantastic advocates for that cause, like the UPA) but to be the leading voice in living with these conditions in the meantime. Since our inception, Shadow Jumpers has supported numerous families across North America in confronting their challenges with the sun. We have provided countless sun-proof vacations, renovated homes, assisted with travel, supplied high-end UPF clothing, helped with medical bills, and organized Sun Escape, our photosensitive-safe annual camp for kids and their families.
At Shadow Jumpers, everyone on our team either has a photosensitive condition themselves or is personally connected to someone who does (such as a parent, sibling, spouse, or medical professional). Our goal is to connect with the youngest generation in ways others may not be able to because we have lived it firsthand.
It is not lost on me that these conditions can be extremely frustrating and often feel isolating. My hope is that through Shadow Jumpers’ support, our summer camp, and our expanding online community, no one ever feels alone or abandoned because of their EPP again.
Craig’s journey with EPP.
Want to share your story? Contact us at katri@porphyria.org
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