Living with SAPHO syndrome means navigating a condition most clinicians have never encountered, one where bone pain, skin flares, and joint inflammation occur together in patterns that do not fit neatly into standard rheumatology or dermatology categories.

Living with nonbacterial osteitis (NBO) — also called chronic recurrent multifocal osteomyelitis (CRMO) in its pediatric form — means navigating a condition that confuses even experienced clinicians. The bone pain is real.