In a recent blog post for Scientific American, a writer who didn’t receive a cystic fibrosis diagnosis until her mid-30’s describes her frustration with the medical care she received growing up.
If I could say one thing to other members of the scientific community, it would be this: Nothing—not a sweat test, not a response to medication, not a physical exam—is more important than a person’s own experiences.
In a truly person-centered health system, my clinicians would have asked a lot more questions a lot earlier. They would have told my parents part of the reason the sweat tests were inconclusive was that they couldn’t make me sweat because I was so hypotensive. They would have asked me if under circumstances where my face did sweat, the fluid was so salty it burned my skin. They would have asked me to describe my bowel movements in detail, told me it wasn’t usual to have clumps of undigested fat in your stool. They would have believed me when I said my kidneys hurt or that my calves were swollen.
Read the whole post at blogs.scientificamerican.com