More Than My Face: Living with Parry–Romberg Syndrome

Field notes

The site organizes its material into a personal account, a syndrome explainer, a diary, a sharing kit, and a contact route for people seeking peers. Its statistical frame includes an estimated prevalence of 1 in 250,000, typical onset between ages 8 and 18, and an active phase that may last 2 to 20 years. The final figure—zero people personally met with the same diagnosis—is the author’s own experience, not a clinical measure. Portuguese, English, and Spanish versions are linked.