Meet Lexi, EPP Warrior
“By 10 months old I was screaming in pain on the beach of the North Carolina coast and by 14 months I was officially “the girl that’s allergic to the sun.”
-Lexi, EPP patient.
I have never known life without an Erythropoietic Protoporphyria (EPP) diagnoses. By 10 months old I was screaming in pain on the beach of the North Carolina coast and by 14 months I was officially “the girl that’s allergic to the sun.”
I spent the majority of my childhood in one form of pain or another. If it wasn’t the physical sensation of burning alive after I spent time in the sun, it was the psychological pain of being different and alone with this disease. No one else in my family had EPP, and no one in my small town of Steamboat Springs, Colorado had ever even heard of it. Summer camps, field trips, recess, pool parties were all things I never got to freely experience as a kid. Imagine that. The absolute best parts of being a kid, I couldn’t participate in. The pain of being an outcast permeated every aspect of my sense of self.
As a teenager I had such low self-esteem that I would force myself to go out in the sun without any sun protection at all just so I could briefly feel like my peers. Of course, this only led to the screaming realization that I am not like everyone else once the sensation of diving into a pot of boiling water set in. It also did not help my peers understand my illness. “How can she be allergic to the sun? I saw her in a tank top yesterday.” Well, you didn’t see me rush home and lock myself in a cold dark room afterwards while I recovered.
“I do everything in my power to get outside with my kids safely so that they can have the ‘90s Summer’ of everyone’s dreams.”
-Lexi, EPP patient.
The low self-esteem and reckless behavior carried me into my early 20s and led me to a very dark place psychologically. After hitting rock bottom, making some big moves, and connecting with fellow EPPers for the first time, I found my stride in my late 20s. I was happily married to the man of my dreams, I no longer felt pressure to participate in activities that put me in danger, and I totally stopped caring what other people thought about my full sunproof outfit when I did want to venture outdoors. I could live how I wanted to within the constraints of EPP. I was in control.
Becoming a mother in my early 30s completely shifted that control. I really am no longer in charge of how my day is going to look and I don’t have the pleasure of deciding to just stay at home when the sun is out. I have two high energy sunshine loving toddlers that only want to play outside. I have to go outside. I have to go to the park, to the pool, on combination walk/scooter rides that somehow last 40 minutes too long because someone decided they don’t want to wear their shoes anymore. And it’s no longer as simple as just wearing my gear. Have you ever tried to open a bag of goldfish with gloves on? How about changing a diaper with them? Breastfeeding on the go while trying to stay covered? Forget about it. And your children’s needs don’t just stop because you are currently positioned in direct sunlight. You have to take off your spit up splattered gear and tend to that child. And the anxiety of knowing that you will later pay for every second you spend exposed in the sun is on the forefront of your mind. There is no space to savor this moment in motherhood; you are consumed with fear.
While out on our regular post nap walk one day, my 3 year old invented a new game all by herself. “The Sun Is Lava!” she said as she began to shadow jump. All I could think was “girl, you have no idea!” But the game stuck. It’s the only way I can reel her in when we are out and about and I need her to get in the shade with mommy. I do everything in my power to get outside with my kids safely so that they can have the “90s Summer” of everyone’s dreams. But more and more often I have caught myself saying “It’s too sunny for mommy right now, let’s see if daddy can take you when he gets home.” And that kills me.
Lexi enjoying the sun at the pool with her daughter.
Do you know what happens when a mom with EPP gets too much sun? She still has to parent. She’s still making dinner over a hot stove, giving her children a bath, laying with them while they fall asleep, and waking up to do it all over again the next day. There is no such thing as a sick day for a mom. That means once again living in pain. Pain amplified by having your already burning hands plunged into a warm bubble bath. Moms know the feeling of being “touched out” all too well. But being touched out with an active EPP reaction… it’s excruciating.
For years it has been my dream to be the parent swimming in the pool with my child and not hiding in the shade in a full UPF 50+ costume. I long to be the one pushing my kids on the swing set and not watching from inside. And I’m sick of going to the beach and having to spend the whole day inside the rental while my children make core memories in the sand with everyone else. I should be out there with them. And I should be out there free of pain and free from the fear of this sun disorder.
Due to motherhood, I was unable to meet the requirements to enroll in the FDA trials for Disc Medicine’s Bitopertin. I was always trying to conceive, pregnant, or breastfeeding during the enrollment periods. However, I had hope the medication would be approved in February of 2026, just in time for me to start once I finished weaning my youngest. Getting the news that the medication was not approved was one of the hardest days for me on my journey. I made it through 3 years and two babies with EPP pain because of the hope I was able to cling onto. That setback rocked me as the realization that I would once again experience a spring and summer chasing my kids around in the sun without treatment.
“Do you know what happens when a mom with EPP gets too much sun? She still has to parent.”
Everything changed when Disc Medicine announced their Expanded Access Program. It was finally my time to step into the light. As I write this, I am exactly one week into treatment. The sun already feels drastically different on my skin. I’ve been able to take my children to the pool without my sunproof gear and go on walks with them without feeling any pain. Now the only anxiety I have is from the fear that the FDA may not approve this medication and the Expanded Access Program will end. This medication has changed my entire life, my children’s lives. I can’t imagine a future without it.
Lexi and her family.
To the people in power, I have already spent my entire childhood in constant EPP pain, I don’t want to spend another minute of my motherhood in it too. Please make the right choice and approve Bitopertin once and for all. We deserve to be free. I deserve to be free.
Lexi’s inspiring story with EPP.
Want to share your story? Contact us at katri@porphyria.org
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