Imagine having to plan a trip to your mailbox or a walk to your car. Imagine living in dark isolation, with the sunlight being your worst enemy. Billions of us relish even an hour in warm, blue skied sunlight. But for a few thousand people, sun and light cause a rare, excruciating internal reaction that feels like they’re literally burning from the inside out, often with few if any outward symptoms. Not only does proper diagnosis of these rare conditions called erythropoietic protoporphyria and x-linked protoporphyria often take decades, but long term side effects can cause catastrophic, even fatal liver damage – and there is no cure. Thankfully porphyria leaders are advocating for greater awareness, creating programs like “Shadow Jumpers” for survivors who have to avoid the sun, and spearheading the development of life-changing future treatments. Go Behind The Mystery and meet the brave warriors of EPP and XLP.
