Why I Started This App
Our family spent nearly three years trying to figure out what was causing my son's pain. We saw specialists, ran tests, and searched for answers, but because CRMO is so rare, it is often difficult to diagnose. It is a disease of exclusion, which means doctors must first rule out other possible causes before arriving at the correct diagnosis. Pediatricians may not be familiar with it, and MRI scans, which are essential for detecting lesions, can be hard to access or approve.
When we finally received the diagnosis of Chronic Recurrent Multifocal Osteomyelitis, we were relieved to have an answer, but also frustrated. There was no single place to track his symptoms, medications, imaging results, and flare patterns. Each doctor visit felt like starting from scratch.
I started this app to make that experience easier for other families. It helps parents and patients record what happens each day, see trends over time, and share clear information with their care teams. It also creates a way for de-identified data to support research and help clinicians recognize CRMO sooner in other children.
As an engineer and a parent, I have seen both the technical and emotional sides of this challenge. My goal is to bridge those worlds and build a tool that makes living with CRMO a little easier, while helping the medical community learn from every family's experience.
-Martin Walsh