Part one – “Absolute intolerance to light”
This is the first webcast in a series featuring Mikey, an Australian man with Erythropoietic Protoporphyria (EPP). When his skin is exposed to light it causes unbearable burning pain.
Mikey describes the intense pain of EPP as “feeling like your skin is burning off”.
EPP is a genetic disease that causes severe phototoxicity (toxic reactions to light). When skin is exposed to light, especially blue light, it results in excruciating pain, swelling and blistering that may lead to scarring. The condition is referred to as “absolute intolerance to light”, a fitting name as patients are forced to seek shadows and avoid light.
Mikey’s determination to enjoy a camping trip with school friends when he was 11 years old resulted in an agonising reaction that left him with a vivid memory of the experience. Despite being fully covered by protective clothing and wide brimmed hat, the reflected light from the ground and vegetation was relentless and burnt his face resulting in intense pain and swelling.
Read more about CLINUVEL’s EPP program here.
Image reference http://www.flickr.com/photos/sm/84266625/