On January 18, 2002, my son, Nicholas was born with Prader Willi Syndrome.
While much of that day is a blur to me now, there is one thing I remember very clearly....the unusually high number of complex medical terms the physicians used to describe my son's diagnosis to me. I remember feeling as though I was a pre-med student who had forgotten to purchase her medical dictionary.
Beside my infant son's bedside, I kept a pen and pad of paper. I wrote down every word I didn't know. Since that day, I have accumulated a rather impressive list.
slipped capital femoral epiphysis
uni parental disomy
Von willebrands disease
methylation, deletion, imprinting mutation
electrical status epilepticus of sleep
This is the overwhelming list of medical terminology which must be thoroughly understood by parents of children diagnosed with PWS.
I don't know about you, but I believe we should qualify for an honorary Harvard Medical Doctorate Degree!