My whole life growing up, there was this specific buzzing sound that would come alive on the sunniest of days. I’ve been told over the years it’s because of everything from male insects and frogs to overheating powerlines, and even early-onset tinnitus (let’s not go with that one). Whatever the reason behind it, I always viewed the noise as a “shelter in place” warning siren, signaling to me that the rest of the day was going to be one hell of a day to have to get through. For most kids, that would sound crazy. The siren of a hot and sunny day would almost certainly be met with jubilation and cheers.
But for someone born allergic to the sun, it was nails on a chalkboard.
I was born with a rare blood disorder called Erythropoietic Protoporphyria. To save you the trouble of trying to pronounce the Harry Potter-sounding spell correctly, we simply call it EPP. It is an extremely rare condition in which the body becomes hypersensitive to sunlight. Patients with EPP have a malfunction in the enzyme that converts light-sensitive molecules, called protoporphyrin, into heme. As a result, these molecules over-accumulate within the body and when those molecules are exposed to sunlight through the skin, toxic photochemical reactions occur. While the condition is genetic, only my sister Nicole and I have symptoms. My youngest sister Madison, does not. Jury is still out on if this by definition makes her mom’s favorite or least favorite.
Most days, especially ones with the sun siren blaring, I would have about 10 minutes before what I called a “warning sign.” This is a manageable pain to the exposed area of skin, where, if I were to get out of the sun in a timely manner, then the pain would go away soon after. If I stayed out in the sun for another 5-10 minutes, however, a full-blown reaction would occur. Having an EPP reaction is, without a doubt, a violent feeling of pain. Think of the sensation if you accidentally badly burned yourself on a stove, and then you infused that with the pain of accidentally cutting yourself with a knife. That is an EPP cocktail that puts you out of commission for a solid 24+ hours and then alters what you can and cannot do the rest of the week because of the sun avoidance need.
As painful as these reactions are, for a lot of patients, the more challenging day-to-day aspect of EPP (and general photosensitivity) is the mental hurdles of sticking out so aggressively in public situations, having to prove you actually have these conditions, or being forced to miss out on things because it’s just too sunny. Right away, those issues start in school. I couldn’t go out on most sunny days for recess or gym class. If we had a school field day, I would try to go out but in a protective long-brimmed hat with a neck flap, a mask pulled up over my nose, long shirt, pants, and gloves. I’m basically dressed like I’m crossing the desert for a game of four-square. I never went out for a school fire drill. I obviously was briefed on where to go in the event of a real emergency, but I constantly had to stand firm with substitute teachers who thought I was trying to be funny and make things up. Growing up in general for a kid is hard but growing up as a photosensitive kid can be A LOT. In classic kid fashion, I would eventually take the high risk of getting burnt instead of putting on all my gear and having to stick out and bring all this attention on to myself. I would go to Six Flags without gloves and come home with my hands looking like boxing gloves. I would ride my bike during the day with my best friends, not wearing my hat, and fry my nose and so on and so on.
And while I’ll admit, still to this day I have some of that same self-conscious “not wanting to stick out” doubt, one summer when I was in high school really changed that mindset and how I viewed my rare condition. It was the summer before my sophomore year, and it was the heart of our football practice schedule for the summer. 3-hour, early morning sunny practices, something like 19 practices in 20 days. We are about 10 practices in, and I’ve just been getting burned every day. My hands, my nose, the back of my neck. I’m covered up as best I can be, but that much compounded time in the sun isn’t giving my body time to heal, and it’s turning baby reactions into crazy painful ones. I’m lying on a recliner in my basement at 3 am, after moving it to the middle of the room so I can sit in just the right path for the AC vent. I’m in too much pain to sleep, and I’ve been in too much pain to sleep for seemingly a week. I can’t fully close my hands, and my nose looks like I’m leading the reindeer on Christmas Eve through a blizzard.
In my 35 years of life, I never felt a more defeating moment. I didn’t think it was fair that I had this condition and couldn’t play sports in a normal way. I didn’t ask for this condition; I thought it was unfair that there were kids who weren’t doing anything with their lives and wasting their ability to go outside pain-free.
I briefly convinced myself that none of this was worth it. I was pretty set on telling my parents in a few hours at the breakfast table that I was quitting, and I told myself I was going to live a “normal” life in the box and boundaries my EPP had essentially laid around me.
But at the very last second, I felt this overwhelming feeling of guilt and shame. Weirdly, I was feeling that way towards how I was viewing my EPP and photosensitivity. The same way you may feel shame after trying to separate yourself from a good friend for unjust reasons, or turning your back on your family, or not wanting to embrace and lean into your nationality and heritage.
EPP is a defining part of who I am. You say the name Craig Leppert, and it’s a top 3 thing that comes to mind for everyone who knows me. From the moment I was born, I was given something that makes me stick out authentically in every room I’m in and in every conversation that I’m brought up in. It is so unique that it almost sounds borderline made up, where people pause after you tell them and they go, “wait, are you serious?” There is power in that. Power that you can let dictate your life or power that you can harness and use to propel yourself forward in ways you just couldn’t do otherwise.
I had never thought of my EPP that way before that sleep-deprived, pain-induced night in my basement. It completely took over me and reshaped how I viewed everything. I grinded through all of those remaining practices and continued pushing through.
Now, planning and tinkering around my EPP to find solutions to doing things felt instantly 100x more satisfying, and I was motivated by that feeling to experience more things. I was deserving of these moments with the people I cared about, and I was going to properly do them, representing my EPP the whole time. That carried on through graduation, college and ultimately moving to Los Angeles. The sun is everywhere out here!
In 2017, I put that mindset into a mission and started the nonprofit organization called Shadow Jumpers. The name comes from the phrase “shadow jumping,” my family would use to describe how my sister Nicole and I would go ahead of them from shadow to shadow, waiting there until the rest of them caught up.
At Shadow Jumpers, we help families with photosensitivity do the things in the sun they always wanted to do and help make their day-to-day battle with the sun easier. That includes sun-proof vacations, redoing failed sunny trips, helping them renovate their homes, and assisting with their travel needs. Most recently, we helped a family from New Mexico go on vacation to Hawaii, sun safe, and we helped a West Virginia EPP mom redo her failed family trip to Tennessee that went sideways after she was hospitalized with a reaction.
We also have an SPF protective clothing drive where families can send us their child’s used protective clothing they have grown out of, and two years ago, we started an annual sun safe camp weekend with our friends at the United Porphyrias Association.
Our 4-day 3-night camp experience, which we call SUN ESCAPE, is set up to feel like camp but designed specifically with photosensitivity in mind. We cover all the exposed windows with blackout curtains, provide every camper with a UV umbrella, provide a covered bus to assist shuttling people to certain areas, and all of our outside programs are purposefully set in the late evening. Activities include archery, horseback riding, ziplining, a super dome, a pool, a rec center, a bowling alley, fishing, a block party and more. Our slogan for the weekend is “All Fun, and No Sun,” and we head back to camp at the end of April.
While our work for families continues to be impactful, I did think back in 2017 that through Shadow Jumpers I could easily take my beliefs and conviction and easily reshape the mindset of our community. Pretty quickly I realized that was not going to be the case. EPP and other photosensitive conditions are extremely personal. Everyone has their own isolated story about being up late in their basement hurting and struggling. It is a lot of “We might have had the same condition, but you just didn’t have it like I did. You don’t get it,” kind of stuff.
Too many people in our community have felt they have no choice but to live in that box that EPP has around them, and they certainly don’t feel fulfilled about living with that hardship either. But recently there has been a drug to come along that for them, for me, and for all of us, has completely changed our wellbeing. And that drug is Bitopertin from Disc Medicine.
There are currently other treatments available to people with EPP. Many of those options literally darken your skin, presumably putting a layer of protection between the sun and you. Bitopertin, however, slows the production of protoporphyrin, the molecule as I said earlier that accumulates in our bodies and causes these toxic photochemical reactions. To put it simply; it makes less of the bad stuff and we can go outside for an insane amount of time. I can speak from experience that I lasted SIX HOURS outside before I felt a small reaction. People in our community think of it as a miracle drug that has literally brightened their lives. The drug, currently in clinical trials, was awarded a Commissioner’s National Priority Voucher from the FDA, essentially expediting the chance for a review and approval.
Unfortunately, despite the aforementioned godlike abilities of Bitopertin and the seemingly universal agreement amongst everyone that it increases sun exposure, the FDA essentially denied that early approval of the drug and punted it to 2027 when it can review more data from a phase 3 trial. By all accounts it appears to be a matter of WHEN and not IF Bitopertin hits the market. My heart breaks for my people. I figuratively got out of my dark basement back on that summer night when I was a kid and have been pushing through on a positive and accepting life with EPP ever since. A lot of EPP’ers have yet to do that and I think the idea of something so amazing as Bitopertin being available to them finally made them feel safe enough to want that kind of life for themselves.
Even more so, there are a lot of patients who are not in these trials who now have to wait another year to get this drug. A year might not seem long to the FDA, but you have to view it as another round of birthdays, summer months, family vacations, important milestones and so many things that may be hindered by a patient’s photosensitivity that they won’t get back. The sun is tough, but time is a killer.
Until that approval in 2027 (and ultimately beyond), Shadow Jumpers and I will keep being a positive outlet for EPP and photosensitivity, while we provide for these amazing families the resources and programming to do the coolest stuff they can think up in the sun. That is, of course, if they are ready to get out from their own dark basements and try. Because the sun sucks but you do not. Let’s get living.
