An Alport Syndrome Journey: From Powerless to Empowered - A Patient Perspective.

Abstract

As an Alport syndrome patient, caregiver, and executive director of Alport Syndrome Foundation, I am aware of the frequently challenging road in seeking an accurate diagnosis. Our journeys are scattered with misdiagnosis, missed opportunities for accurate diagnosis, counterproductive medications, and overwhelming guilt when our children are diagnosed. We understand that most of our healthcare providers know very little about our disease. Typically, it is incumbent upon us to become empowered through education and connection with our patient community to be sure that our physical and emotional health is well managed.