My son was diagnosed with HIDS/MKD after 10 years of unexplained fevers — years of fear, confusion, and searching for answers. What finally led to his diagnosis, and later to finding the right treatment, was data. Tracking his flares, documenting patterns, and being able to show his doctors exactly what was happening over time.
For years I tracked everything on paper. When we went to appointments, his rheumatologist would make copies of my handwritten notes — but neither of us could see the bigger picture. No averages. No trends. No way to show whether things were getting better or worse over time.
Years of handwritten records. There had to be a better way.
That visibility turned out to be critical — not just for reaching the right diagnosis, but for getting the right dose of treatment. The biologics used for these conditions are immune-suppressing, and rheumatologists are appropriately conservative, especially with children. Our doctor needed to see clear data over time to justify adjustments. Beacon gave her that.
Today my son's condition is what I would call controlled. He receives monthly biologic injections. He gets sick far less often. Immunizations no longer trigger flares. After 12 years of struggle, we're cautiously hopeful.
Beacon is the app I wished had existed all along. It's free, it works on any phone, and it was built specifically for families navigating autoinflammatory conditions — because the data you collect at home can make a real difference in the care your child receives.
— Claudia, HIDS/MKD mom
