Meet Karen, EPP Warrior
“On top of having a debilitating, undiagnosed condition, I carried a deep fear that something about who I was made me less worthy of healing.”
-Karen, EPP patient.
I grew up in a close faith community while unknowingly living with Erythropoietic Protoporphyria (EPP). As a child, I experienced severe reactions to sunlight, but despite countless doctor visits and emergency room trips, no one could explain what was happening.
As the years passed, I also began to understand more about who I was. I was navigating questions about my health, my identity, and where I belonged, all at the same time.
During that period, some of the messages I received deepened my feelings of shame and confusion. Without a diagnosis, and without clear answers, I was left to wonder whether my pain was somehow my fault.
On top of having a debilitating, undiagnosed condition, I carried a deep fear that something about who I was made me less worthy of healing.
For years, I carried the weight of unanswered questions while navigating both my health and my identity. That experience had a lasting impact on my mental health and sense of belonging. Today, after years of therapy, reflection, and personal growth, I have built a life grounded in authenticity. I came out in 2021 and am now engaged to a wonderful woman.
My story is a powerful reminder that living with a rare disease can already feel isolating. For LGBTQIA+ individuals, that isolation can be compounded when they do not feel safe, seen, or fully accepted.
I am proud of my journey toward healing and self-acceptance – and of the validation I felt when I received my EPP diagnosis.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
