Meet Erin, EPP Warrior
By Erin Janiak
Curated by Katrina Parra
"For as long as I can remember, the sun has hurt. Deeply, long lasting acid in my veins."
-Erin, EPP patient.
Hi, I'm Erin Janiak.
I'm the Patient Navigator here at United Porphyrias and for as long as I can remember, the sun has hurt. Deeply, long lasting acid in my veins. My parents would take my sisters and me to the pool, and within 15 minutes I would be in pain and begging to go home. Even when my parents encouraged me to stay, and I would find a cooler shaded place, the sun would reflect off of the water and everything would get worse. There would be no bruising, no blisters, no signs of just how much pain I was in.
We would go to see doctors, and the good ones would tell me "I'm so sorry, I don't know what's wrong." The bad ones would say that I was fussy, making it up for attention, and for my parents to ignore my behavior.
“The director sat me down alone, explained in detail what a hypochondriac was, pointed at me and said, ‘that's what you are.’”
-Erin, EPP patient.
When I was 12, I went to an overnight summer camp with a friend. They had horses, cabins, and almost zero shade or indoor activities. After days of exposure with no relief, I finally had some physical signs of my disease, as purple splotches and leathery skin formed on my hands and face. Yet the camp staff refused to let me call home, and on the Thursday evening of a week long camp, the director sat me down alone, explained in detail what a hypochondriac was, pointed at me and said, "that's what you are."
After the camp finished, my parents took one look at me, and we rushed to the Children's ER. There was a pediatric dermatologist who recognized the purple lesions from a medical journal and we went through testing for porphyria, all which came back positive for EPP (Erythropoietic Protoporphyria).
With my diagnosis in hand, my life became ironically brighter. I had validation and justification, but I never forgot years of being dismissed, both personally and by the medical community. "Hypochondriac" is still a dirty word.
I eventually went to nursing school, and worked in critical care during the night shift. I paused my career to care for my two children with my wonderful husband, neither who have EPP. Eventually we moved to DC for my husband's work, and I got a chance to meet Kristen Wheeden. I started helping while my kids were in school, as there is so much amazing work that needs to be done. I was so grateful to be given the opportunity to give back as a patient and as a nurse.
Erin, happy, enjoying the sunset.
I have been living my best life at the moment. I've been involved in research and had the opportunity to participate in trials. There were no treatments as a child, and now I get to help promising treatments get potentially realized. I get to connect with people with porphyria and make the world literally brighter. I help patients get diagnosed, connect sufferers with porphyria specialists, and get people like me involved in drug trials that have impacted my life so deeply. I'm so proud and grateful to work for United Porphyrias, and I'm happy to be your Patient Navigator.
If there is anything I can do to support you, please email me: erin@porphyria.org
Want to share your story? Contact us at katri@porphyria.org
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