Porphyria

Porphyria is a rare condition — so rare that most people have never heard the name. And yet it carries a weight that extends far beyond its frequency. Your body has difficulty producing heme — that component of the blood pigment responsible for oxygen flowing through you and your body being supplied with life. An enzyme in this long chain does not work fully. Intermediate stages accumulate. The metabolism loses its rhythm.

The consequences vary greatly depending on the form. Some people with porphyria develop a deep sensitivity to sunlight — the skin reacts, burns, blisters, scars. Others experience attacks of severe abdominal pain, neurological symptoms, confusion, weakness. Some must learn to avoid daylight. Life shifts into the twilight, into protected spaces, into a different rhythm than that of most people around them.