Opinion: I don’t know what I’m supposed to call my rare kidney disease
My rare disease has an effective treatment — but no clear name. That confusion has consequences.
In 2022, I gave birth to a healthy baby girl and triggered a wildly violent chain of events: multiple organ failure, hemorrhaging, blood clots in many of my major organs, and a rattled medical team working tirelessly to keep me alive.
For five weeks, I rotated in and out of the ICU, near death. My husband got a call in the middle of the night while I was in an induced coma to prepare him for the possibility of raising his little girl without her mother.
