I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions157repliesCoping
Invisible IllnessWhat aspects of your rare disease are invisible to others? ...reactions99repliesCoping
Trying to make complex care feel less overwhelmingTrying to make complex care feel less overwhelmingI keep thinking about something I’ve seen over and over in complex care: the care...reactions2repliesCaregivingNewly DiagnosedCoping
My Journey with Alport SyndromeWell, I doubt anyone will read this or even care, but I’m writing it anyway. I’m a single, straight 31‑year-old woman, currently...reactions1comment