Cayla Danko doesn’t let a rare skin condition keep her from the great outdoors

March 28, 2026 by Katy Henriksen

Cayla Danko doesn’t let the rare skin condition Erythropoietic Protoporphyria keep her from her dream of doing a ‘Triple Crown’ to hike the Pacific Crest Trail, the Continental Divide and the Appalach

This article was pulled from the Northwest Arkansas Democrat Gazette. To read the article via their website click HERE

Cayla Danko is a rock star of sorts. The 36-year-old once hiked over 2,000 miles of the Pacific Crest Trail, which runs 2,650 miles from the Mexican and Canadian borders through California, Oregon and Washington. A feat for anyone, but especially for a person with the rare genetic skin condition Erythropoietic Protoporphyria (EPP).

"It's a rare disorder that causes severe pain with exposure to light," Danko said. "And the pain can last for several days. It's really a problem with the pathways in our bodies of making heme, which carries oxygen through your blood. There's a block in that pathway, which builds up a toxic chemical called protoporphyrin, a chemical that reacts like chlorophyll."

She likened the creation of protoporphyrin in the blood of those with EPP to the way chlorophyll causes photosynthesis in plants. Protoporphyrin absorbs sunlight and artificial light and emits damaging free radicals into their blood that causes severe pain, invisible burning sensations and nerve damage.

"The experience is honestly horrifying for those who don't know what it is," Danko said.

Since moving to Bella Vista in winter 2023, Danko hits the many trails that start just out her front door every chance she gets. She moved from Portland, Ore., to Northwest Arkansas to serve as vice president of operations for LifeWorks Restaurant Group.

She refuses to let the rare skin disorder keep her from exploring the great outdoors.

As a participant in drug trials for Bitopertin, a medication that manages EPP reactions, Danko is now able to spend hours outside in the daylight.

Danko's life before diagnosis was complicated and painful.

Her sister, who is two years older, also has EPP. "We were going through that together," Danko said. "At least I had somebody. A lot of people don't.

"When we were younger, we had different symptoms. Nobody really understood what was happening," she said. The condition, not well known or easily identifiable, is difficult to diagnose because reactions are slightly different depending on the person.

"With EPP in particular, you can't see it. It's not visible to the eye. So, when someone's in screaming pain or crying levels of pain intensity, but you can't see anything, it's hard to get people to understand what's going on.

"We went to countless doctors, year after year, specialty after specialty, and there was constant pressure that this was either all in our head -- something psychological."

"It's tough to get someone to believe that something's happening when you can't even see it, which can be emotionally damaging as a kid."

Danko received her diagnosis at 13. They'd just moved to Virginia Beach, Va., and she was trying out for a soccer team there, which didn't work out.

"I remember just crying my eyes out in the locker room in crying pain," she said. "How do you explain that to a coach and the new kids around you and get people to understand what's going on? You don't, and that was honestly before we got the diagnosis."

She described her diagnosis as a fluke.

"That's honestly a pretty common thing in people with EPP, because most doctors don't know about it," she said. Despite the severe pain, skin typically looks normal for those who have the condition.

"You can't see it with the visible eye. It just so happened that my mom was working with a physical therapist and was talking about the frustrations and what we were feeling," Danko said.

"I think of my experience as a kid -- you literally have to jump. It's a running joke that you jump from shadow to shadow. I remember hiding from tree to tree to try to find a way to stay protected before. A lot of families don't have money to invest in really nice quality gear to be protected outside."

SHADOW JUMPING

"Normal people love light. For me, it's literally jumping from desk to desk, moving with the light and the patterns of the shadows," said Danko about life with EPP.

Craig Leppert, who also has EPP, founded Shadow Jumpers, a nonprofit with a mission to give children with photo sensitive conditions a chance to enjoy experiences that seem mundane to those without the condition.

Leppert found Danko on Instagram. She'd started posting about her life with EPP.

"I was trying to get outside and go backpacking and try to do some normal fun outdoor activities," she said. He reached out to Danko to see if she would be interested in supporting Sun Escape, a summer camp in North Carolina that he organizes for kids with EPP and other photosensitive conditions.

"Cayla is a rock star for us with Shadow Jumpers," Leppert said. "I'm so, so thankful that we have found a way to convince her to be part of our little organization and ever-growing community of what we're trying to do."

He described finding "one of those amazing photos of her covered up hiking 15 miles in one day with an umbrella. I was like, 'God, this person is one of the textbook examples of what we're trying to do.'"

He got in touch with her to ask for permission to repost some of her photos and also to learn more about her.

Danko turned out to be an ideal role model at Sun Escape.

"She is just a perfect example of the kind of person that we're looking to find both for camp and ... for all these things at Shadow Jumpers," Leppert said.

"I went, and honestly, it was incredible," she said of attending the camp for the first time in 2024. It was the first time she'd ever met anyone else with EPP aside from her sister.

At the camp, she met 20 people with the same condition.

"All of these kids are trying to figure out how to navigate life, how to have some fun, how to get outside, how to not have reactions in an environment that just sets you up for failure when you can't go outside," Danko said.

"It's been awesome with Shadow Jumpers, getting the chance to help those kids have some fun," she said.

At May's Sun Escape, she met Emily Pearson, a 25-year-old environmental consultant from Minneapolis. Pearson also has EPP and is participating in the Bitopertin trial after learning about it from Danko.

"We really bonded, obviously, over having EPP," Pearson said. "But also over our love for nature and going outside and how difficult we found it to enjoy the things that everyone else could outside."

"When I went to Sun Escape last year I had never heard of Bitopertin," Pearson said. Although she began the trial after Danko, she has already seen results, especially as an avid runner. She used to wake up at 3 or 4 a.m. to train for marathons or run at 9 p.m. after the sun went down.

"After taking the medication, I found myself able to run in broad daylight in shorts and a T-shirt on a normal schedule like a normal person," Pearson said. "It's been really nice to know people who are also going through the trial, to be able to talk to them about it and share similar experiences and marvel together at how our lives have changed because of this drug.

"She is awesome. I feel really lucky to know her because she's a very good role model," Pearson said. "She does not let her EPP stop her. That's very admirable because it's a really easy condition makes you just want to give up.

"It can be really isolating, but she does not let it stop her from living her life. She goes on all these crazy hikes and outdoor adventures. I look at that and think, 'if she can do it, I can do it.' She's such a good role model for the kids too."

Pearson wasn't diagnosed until she was 17.

"That was one of the things that Cayla and I talked about. If we could have had (Sun Escape) as kids, it would have made our lives so much better. These kids have so much support and strength and community and connection," Pearson said.

"When you're 8 years old, you probably don't realize. All the adults in the room realize the power and the joy that that camp brings those kids, because for a weekend you're normal," Pearson said. "You're not the weird kid wearing their sun hat at recess or out on the beach. You're not looked at for being strange because everyone around you is the same as you. When it's such a rare disease, that is really difficult sometimes."

Danko says that Bitopertin allows her to be out in the sun and enjoy an active lifestyle.

"I was definitely very nervous to go into a trial," Danko said. Her sister, a scientist in Boston, was already participating in the phase two trial. She's the one who convinced Danko to join the trial.

"To say that this has been life changing is an understatement," she said. "I will get a little emotional talking about it because it's intense.

"Before this medication, I could get out for maybe seven to 10 minutes before I would start getting EPP symptoms."

"I went out during the trial for around three to four hours before developing symptoms, which is mind blowing," she said.

"Normal people go to the beach and have a whole vacation for a week. Now, on a cloudy day, I can go around five hours with my face and hands out," Danko said. "I still wear some basic protective gear. It's incredible."

Since it's a rare condition, the Bitopertin trial required as many people as possible with the condition to participate.

"And you need every single one of us to go through a trial to get the data to show that it's beneficial," she said.

"Part of the trial is you have to go outside," she said. Some trial participants don't receive the medication. "So you have to go outside in this trial. And you have to push yourself on something that has been horrifying your entire life."

"There's a fine line between when you feel some burning and itching to it spiraling into an absolutely horrific experience that then takes you down."

"I was afraid to go into it, because you have to do it every week for six months and you might not be on the real drug," Danko said. "I know people who are in the trial that are not. But if you don't do it, how do we advance the scientific capabilities to help people?"

THE GREAT OUTDOORS

Since she needed to limit her sun exposure, Danko became a caver as a college student at Penn State.

"So I found a sport in the dark, which was super freaking cool," Danko said. "I found a community of individuals that were outside all the time." She loved the outdoors, whether it was crawling through the mud or in the dirt, or climbing, hiking or mountain biking.

"I love it. It's where I find peace of mind. Being outside and going for long walks brings a lot of clarity," Danko said. Despite her personal challenges she figured out a way to get outside.

After college she moved to Oregon with her husband, Joe Powlus, where they lived for 11 years. The big trees, excessive days of clouds and lots of rain made it easier for Danko to be outside with EPP.

They started backpacking and perfecting Danko's protective gear.

"It was not without failure," Danko said of recalling her first attempt at a multi-day hike along the Three Sisters, a 50-mile backpacking trail in Oregon.

"I had everything. I had my umbrellas, my gloves and my face masks and all the gear you can think of," she said. Yet she still ended up with a reaction after two days of hiking.

Even protective UPF gear features tiny pinholes. She double-gloved and her skin still reacted in the middle of the woods.

They were still about 23 hours' worth of hiking away from their car.

"Thank God for my husband," she said.

They eventually hiked the entire Pacific Crest Trail -- well, 90% of, due to fire closures -- that runs from Southern California up the coastline to Washington state.

"There were fire closures, which was the saddest part of the entire trip. We hiked for around five-and-a-half months and then the border caught on fire, so we did not get the last 100 miles of Washington."

Before participating in the Bitopertin trial she used an implant medication called Scenesse, generically known as afamelanotide. It required surgically placing an implant inside her head every two months. Danko said the medication provided a protective layer and tanned her slightly.

While the implant wasn't flawless, it let her be out in the sun for around 30 minutes to an hour at a time.

"When you have life with EPP, that's enough to go to the grocery store and get to work," Danko said.

"I still had to cover every inch head to toe double layers and (use) umbrellas, and I had numerous reactions, but we did it," she said. "We went to the Mexican border and we hiked north for 2,650 miles."

"The Mojave Desert was an insane experience for me," she said of hiking along the scorched treeless desert. "If you told someone, 'I'm going to spend three weeks in the desert,' I don't even think I would want to. That's a lot. Normal people don't even want to do that.

"It was a mental game, looking out at the desert hills with no trees and no shade as far as you can see. I had a couple panic attacks," she said. They did a lot of night hiking in that section, waking up at 2 a.m. to hike until around 7 or 8 a.m., following the shadows of the mountains and hunkering down under bushes to move with the shade of the bush for hours. "That was wild."

TRIPLE CROWN AMBITIONS

"When I think of the possibilities, they're incredible," she said, regarding all the hikes she dreams of making.

"I went for a bike ride with my husband. The Bentonville trail system is incredible. With my mask down, I can keep up."

"It's harder to breathe when you're completely covered in layers, and I went for a 30-mile bike ride. For a normal person that probably sounds like nothing, but for someone with EPP that's everything," Danko said.

From her home in Bella Vista she can leave her house and walk to the SBAT trail, which links up to the Back 40.

"We hike out there every weekend," she said. "Just this past weekend we hiked twice, seven miles both days. It's one of the coolest things about this area is there's so many loops and options, and I don't even have to drive -- like I can literally leave my front door.

"We've done the Buffalo River Trail here too, which is awesome. I think we did about 40 miles of that last fall. Absolutely beautiful, right out on the river. There was a hiking trail that goes right along it."

The Ozark Highlands Trail is also on her list. If Bitopertin is approved by the FDA she wants to do a Pacific Crest Trail redo with her husband. They would like to do a "Triple Crown" eventually of three hikes that include the Pacific Crest Trail, the Continental Divide and the Appalachian Trail.

"When you're night hiking, you don't get as much of the social environment. I had to get off trail every 50 days and fly out to go get another implant. And like the experience was just really choppy." She had to heal from the procedure and then get back out to the trail.

She dreams of hiking the Continental Divide.

Danko was also diagnosed with Ehlers-Danlos Syndrome (EDS) three years ago. She describes it as a really unpleasant connective tissue disorder.

"It's been a wild experience. The chronic pain in that is pretty intense. Which is another reason why, honestly, hiking has been critical for me because with EDS, really the only forms of exercise that are good are walking and biking."

The FDA chose not to accelerate the Bitopertin trials.

"The accelerated approval of this medication and access to that is so critical," Danko said. "You're literally sending people back into the dark."

Instead the approval decision will be made after the third phase of the clinical trials.

"If you think about when you're taking a loaf of bread out of an oven and you feel the steam blow on your face and it's hot and you kind of back up, at least for me, it kind of starts like that, but you can't back up.

"Or if you're getting splattered with hot cooking oil, but you can't shake it off and you can't get away from it. You also can't see it. So it's just ... really intense. It's the only way I can describe it.

"Medications like this, whether it gives you 20 minutes, four hours, or I know people who have had up to 8 hours ... they've got to pass this drug. Please don't send us back."

-------------- CAYLA FUN FACTS BELOW

PLACE OF BIRTH: Flint, Mich.

EVERY MORNING I MUST HAVE: Cinnamon raisin English muffin and black tea.

MY BUCKET LIST HIKE IS: Continental Divide Trail (CDT) and Te Araroa Trail in New Zealand.

BEST PIECE OF ADVICE I'VE RECEIVED: Life is too short.

IF I COULD HOP ON A PLANE RIGHT NOW I'D GO TO: Campo, Calif., and start hiking north.

THE FOUR GUESTS AT MY FANTASY DINNER PARTY: Ron Swanson, Samwise Gamgee, Gandalf and Winifred Sanderson.

ONE WORD THAT SUMS ME UP: Dynamic.

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