👉 Cystinosis, also known as porphyria gigantea, is a rare genetic disorder characterized by an accumulation of porphyrins in the blood. Porphyrins are organic pigments produced by certain species of bacteria that can accumulate in the body and lead to various diseases including cystic fibrosis. The specific term "cystinosis" comes from the Greek word "cystos," which means "bacteria," as it is often associated with an accumulation of por