Luciana barely recalled when they first appeared — those painless, lavender bumps dappling her arms and legs. “Oh meu Deus, o que é isso?” (“Oh my God, what is this?”) thought the 40-year-old native of Goias, Brazil, while continuing to care for her family. Later on, an idea took root. Were the purple welts on her limbs connected to the flaming mass on her face?
Almost reflexively, Luciana’s fingers brushed her nose, whose boggy, red flesh she sometimes draped with a scarf.
This angry feature had puzzled Luciana’s American doctors for years. They initially blamed it on a terrible case of sinusitis. Then an ear, nose and throat surgeon sprayed local anesthetic, passed a scope and obtained tiny bites of tissue. The biopsies suggested Wegener’s granulomatosis, a rare autoimmune disease.
Soon, Luciana was downing immunosuppressive drugs that caused her cheeks to bloat, her hair to thin, and her menses to stop. But still her nose and mouth stayed red, her sinuses tender and blocked.
