Living with Erythropoietic Protoporphyria (EPP): A Personal Journey
Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family.
Written by Candace Colbert
Curated by Katrina Parra
I Have Never Seen Anyone Washing Windows in the Rain
Before I was diagnosed with Erythropoietic Protoporphyria (EPP), I remember a conversation with my neighbor that stuck with me. She once said, "I have never seen anyone washing windows in the rain." At the time, I thought it was funny, but it made me realize just how extreme my sun avoidance had become. Not only did I wash windows in the rain, but I also found myself doing simple errands wrapped up in layers of clothing to protect myself from the sun. I avoided outdoor activities during the day and preferred to stay in the darkest corners of restaurants, away from any sunlight.
“Now, I wash windows on sunny days and walk with my friends any time they ask thanks to treatment!”
-Candace Colbert, EPP patient.
What is Erythropoietic Protoporphyria (EPP)?
Erythropoietic Protoporphyria (EPP) is a rare genetic disorder in which the body has difficulty processing porphyrins. These are substances in the blood that help produce heme, a key component of hemoglobin. In individuals with EPP, porphyrins accumulate in the skin, making the skin extremely sensitive to light, particularly sunlight. Exposure to sunlight can cause intense pain, burning, and itching. In some cases, the pain can be severe enough to limit daily activities and cause significant physical and emotional distress.
Symptoms of EPP: Burning Pain and Sun Sensitivity
If you experience a sharp, nerve-wracking pain on the back of your hands, feet, or face that occurs a few hours after sun exposure, you may want to explore the possibility of EPP. The pain can be deceptive—some days, you may tolerate a brief period in the sun without any immediate consequences, but additional exposure may send you scrambling for shelter.
When a full-blown reaction occurs, the pain feels like being too close to an open flame and not being able to pull away. It is a deep, searing pain that nothing but time can alleviate. In my experience, I have found myself hiding in the darkest rooms of my home, with the blinds drawn shut, unable to escape the burning sensation. This phase can last for 2-5 days or more.
The Emotional Toll of EPP: Isolation and Depression
Living with EPP is not just physically painful—it can be mentally exhausting as well. The constant need to avoid sunlight can lead to social isolation, as simple pleasures like dining outdoors or attending a family gathering become nearly impossible. The mental toll of missing out on social activities can lead to feelings of depression and frustration, especially when you feel disconnected from the world around you.
The Relief That Treatment Can Bring
Thankfully, after receiving the right treatment, I am now able to walk outside during the day and enjoy time with my friends without the constant worry of sun exposure. Treatment has given me back the freedom to do the simple things in life, like washing windows on sunny days or walking outside without fear of the painful consequences of sunlight. If you, or someone you know, are experiencing symptoms of EPP, I urge you to seek help.
How UPA Can Help: Support and Resources for EPP
The United Porphyrias Association (UPA) is here to support you on your journey toward better health. We are a patient advocacy organization with dedicated staff and volunteers committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias, including Erythropoietic Protoporphyria (EPP). UPA provides valuable resources, including access to knowledgeable doctors, information on diagnostic testing, clinical trials, and treatment options.
If you or someone you know is struggling with the symptoms of EPP, please reach out to us. Our volunteers are here to offer support and guidance as you navigate the challenges of living with porphyria. The UPA is an essential resource for individuals affected by Porphyria, and we are here to help you on your journey to better health.
After all her life living hidden away and avoiding the sun, Candace was finally diagnosed with EPP in 2017. The path to the correct diagnosis required a great deal of self advocacy and patience. She has become a passionate community builder and advocate for the porphyria community. She is a UPA Ambassador and a true warrior.
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