Even the briefest exposure to sunlight can cause a severe reaction for Georgina who suffers from erythropoietic protoporphyria (EPP). When she has a reaction, Georgina feels as though her blood is boiling, her hands and face swell, plus she’s left with a burning, tingling sensation that can last for days.

Georgina experiences unbearable pain along with sleep deprivation. When she was younger, she suffered from extreme fatigue which was later attributed to EPP. She explains, “Cool cloudy days can be the best, but only if you manage not to set the condition off beforehand.”

Skin-covering coats, big floppy hats and pairs of gloves are the norm for Georgina. The windows in her home have a protective UV film, as normal glass intensifies the UV rays. Her car also has protective film on the back windows – the law prohibits her from having it on the front and side windows, making it difficult to go places without being attacked by UV.

A tough condition to live with, EPP can be very isolating as it stops the sufferer from joining in with others and leading a normal life. “Those who do not have the condition cannot in any way understand the pain it causes both physically and mentally,” said Georgina.