Part Two – “People don’t believe what they can’t see”
This is the second webcast in a series featuring Mikey, an Australian man with Erythropoietic Protoporphyria (EPP) .
The intolerable pain experienced by exposure to light in Erythropoietic Protoporphyria (EPP) patients is mostly invisible and EPP is poorly understood as a result.
Try to imagine “having your skin burning off” without there being any sign of pain or damage visible on your skin. This is the invisibility of EPP. Misdiagnosis is common and those with EPP can go years in anguish before their physicians identify light as the cause of their pain.
Mikey attempts to convey the pain he experiences after exposing his skin to sunlight. After being burnt, any light exposure is like “driving a nail through your hand”, that is, it is simply not possible to be exposed to any light, the pain is too great. It takes days in complete darkness after a reaction before Mikey will venture outside again. During this time Mikey has found himself unable to eat or sleep. Without any pain killers able to take away the pain he’s experiencing, all he can do is wait in agony for the pain to subside.
Read more about CLINUVEL’s EPP program here.