Why I built PFSTrack
Built from lived experience
My son was diagnosed with HIDS/MKD after 10 years of unexplained fevers — years of fear, confusion, and searching for answers. What ultimately helped lead to his diagnosis, and later to finding the right treatment, was having a record: tracking his fevers and flares, documenting patterns, and being able to show his doctors 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 easily see the bigger picture. No averages. No trends. No simple way to show whether things were getting better or worse over time.
That visibility became especially important once he began treatment. The biologic medications used for these conditions affect the immune system, and treatment decisions need to be made carefully, especially with children. Our doctor needed a clear picture of what was happening between visits when evaluating whether changes were warranted.
That experience became the foundation for PFSTrack.
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 13 years of struggle, we're cautiously hopeful.
PFSTrack is the app I wished had existed all along. It was built specifically for families navigating periodic fever syndromes and autoinflammatory conditions — because having a clear record of what happens between appointments can make those conversations with your child's healthcare team much easier.
— Claudia, HIDS/MKD mom