About CLINUVEL

Part Three - Burning in shadows

11 Apr 2011

This is the third webcast in a series featuring Mikey, an Australian man with Erythropoietic Protoporphyria (EPP). You can view the earlier webcasts, Part one - Absolute intolerance to light and Part two - "People don't believe what they can't see"

There is no escape from light when outside for those with Erythropoietic Protoporphyria (EPP). Even in the shadows Mikey has been in agony from reflected light alone.

EPP patients spend their lives "shadow jumping", making their way from one shadow to the next in order to limit their exposure to the sun as much as possible. But even out of the direct sunlight EPP patients are always in danger of severe reactions. Light reflects off the ground and other surfaces exposing the skin of EPP patients to light.

A cloudy day may seem to offer relief from sunlight, yet clouds can increase the intensity of exposure. The heat associated with a sunny day is absorbed by clouds and can give a false sense of security as to the intensity of sunlight. Without the ability to find the sanctity of shadows, EPP patients can accumulate exposure without realising, until its too late.

Being completely covered in protective clothing and under the shade of a 747 wing was not enough to prevent Mikey's skin being exposed to sunlight. Reflected light from the tarmac "destroyed" his face, even from under a broad brimmed hat. He was forced to spend the next two days in complete darkness, in unbearable pain, unable to eat or sleep.

To read more about Mikey's experiences with EPP, head to the CLINUVEL blog.

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