Meet Molly, EPP Warrior
“I kept telling all of the adults around me how much it hurt, that it felt like I was being burned alive.”
-Molly, EPP patient.
My name is Molly Komon. I am 12 years old, and I am an Erythropoietic Protoporphyria (EPP) patient. In my free time, I bike, play tennis, and play the flute.
My symptoms first began when I was one year old. I was at the beach screaming for hours for no explainable reason. My parents and grandparents had to push me around in my stroller in the shade for me to stop crying.
The earliest reactions that I can remember were very frustrating. I kept telling all of the adults around me how much it hurt, that it felt like I was being burned alive. At the time I was around 5 or 6 years old, so no one believed me. They told me that it was all in my head and that I just needed to calm down or put on lotion because they thought it was dry skin. Once, an urgent care doctor even told me that she thought I had duck itch.
“I have Erythropoietic Protoporphyria, and I haven’t been in the sun at all for almost a year and a half.”
-Molly, EPP patient.
It took me roughly 12 years to get diagnosed. I have only been officially diagnosed for around five months, but I’ve known that I had EPP for longer than that. I remember the exact moment that I found out what I had. My mom ran into my room after finding out it was called Erythropoietic Protoporphyria. As soon as she said it out loud, we both knew that was what I had.
Regardless, I still had to go through extensive blood testing with doctors who had no idea what to do with me. After multiple highly out-of-range blood test results and referrals, I finally got to see Dr. Balwani at Mount Sinai. Dr. Balwani was the first doctor I had ever met who immediately believed me and knew what she was doing. After her testing, I was formally diagnosed.
I have Erythropoietic Protoporphyria, and I haven’t been in the sun at all for almost a year and a half.
Molly in their room.
During difficult times, one thing that has helped me is being able to go to my room and take a break from everything. It really helps me because my room is somewhere that I know I don’t have to worry about the sun.
One thing that reminds me to stay strong is knowing that the hardest part is over. I’m already diagnosed, and I can’t go back to before that happened. Anything difficult that I have to deal with now won’t be nearly as hard as being undiagnosed and being told that I was wrong about the pain I was feeling.
One thing I’ve learned about myself is that no matter how little or weak I think I am compared to other people my age, I am stronger than them in a way that they will never understand.
The first time I ever talked to someone with EPP was on a ConnectUP meeting with Candace Colbert. That was the happiest I had ever been to meet another human being.
“My wish for the future is that porphyria stops being a disease that no one knows about”
I want newly diagnosed patients to know that no matter what, you will find someone in your community who has the exact same story as you, and you will find someone who will become your rare disease bestie.
I wish the world understood that porphyria is so much more physically painful than everyone thinks it is.
I’m looking forward to taking Bitopertin. I was too late for the clinical trial, but because of the early access program, I will hopefully be able to start it very soon.
My wish for the future is that porphyria stops being a disease that no one knows about, that doctors no longer struggle to diagnose it, and that insurance companies recognize genetic testing and experimental medications as medically necessary for people like us.
Molly’s inspiring story with EPP.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
