NAVIGATING
LIFE with EPP
or XLP
NAVIGATING
LIFE with EPP
or XLP
Managing EPP & XLP
While more options are needed in erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP), there are ways to manage some of the symptoms of your condition.
Today, avoiding the sun (and sometimes certain sources of artificial light) is the primary way to reduce the risk of painful phototoxic skin reactions.
A subcutaneous implant is also available to help increase pain-free light exposure in adults with EPP.
Ultimately, how you manage your condition will be unique to you. Be sure to talk to your doctor to determine the management strategies that work best for your lifestyle and condition.
While more options are needed in erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP), there are ways to manage some of the symptoms of your condition.
Today, avoiding the sun (and sometimes certain sources of artificial light) is the primary way to reduce the risk of painful phototoxic skin reactions.
A subcutaneous implant is also available to help increase pain-free light exposure in adults with EPP.
Ultimately, how you manage your condition will be unique to you. Be sure to talk to your doctor to determine the management strategies that work best for your lifestyle and condition.
The daily fight against light
To reduce surface-level symptoms like painful skin reactions, people with EPP or XLP can take the following measures to protect themselves from the sun and other light sources:
Wear sun-protective clothing, gloves, and wide-brimmed hats
Use opaque, zinc-based sunscreens
Apply protective window films to homes and cars
Wear sun-protective clothing, gloves, and wide-brimmed hats
Use opaque, zinc-based sunscreens
Apply protective window films to homes and cars
Sun avoidance won't stop the root cause of EPP & XLP
It’s important to note that while these strategies can help reduce skin symptoms, they do not stop PPIX from building up inside the body, and they won't prevent long-term complications like liver damage from occurring.
In a 2024 survey, 66% of people with EPP or XLP reported missing school or work in the past month due to their condition.
Medical implant for EPP
Today, the only treatment option for EPP is an implant designed to increase pain-free light exposure in adults with a history of phototoxic reactions.
This implant works by increasing skin pigmentation, and is inserted into the skin every 2 months by a healthcare professional.
In their own words:
“I always wear long sleeves and long pants when I’m outside, and I can’t ever go barefoot. I also wear special gloves that protect [my hands] from the sun when I’m outside for more than ten minutes.”
— Person living with EPP
