Why I Am Ill-Informed: There are 20+ different subtypes of limb-girdle muscular dystrophy. There are at least 30 subtypes of congenital muscular dystrophy. My kid has one of these. He has something, but we don’t know which particular something, and we won’t know more until we OK the muscle biopsy.
One of my not-resolutions for the new year is to learn more about MD. Thus far I am KILLING the not cursing at work thing, but I return to the office tomorrow for the first time in sweet ’16, so that declaration might be premature. I did finish a book I started yesterday, so that’s a victory away from the phone folly. Fingers to the keyboard, I began my MD knowledge quest precisely where I dropped it mid-December:
And yeah, I pretty much stopped here again. The (not) super helpful, (not even remotely) self-explanatory diagram below is on the Muscular Dystrophy Association website’s Congenital MD page. No, not on the research physicians page or the laboratory researcher’s page of arcane medical facts, this was on a page for THE PUBLIC. Patients and families of patients come here to learn more about the disease. What the hell? I’m not as academically astute as many I admit, but neither am I a simpleton. I earned two college degrees in an allied health field before I turned twenty-three–I did my time in academia, and I have more than a cursory pass at reading scholarly research. Overall I land somewhere on the right side of the bell curve in my intellectual capacity to understand the world. Not this segment of the world though, I guess. Holy crap. After a few readings, I came to understand what the graphic demonstrates, but remember the other day when I said that I can’t ride out “ignorance is bliss?” Yeah-huh I can. It’s only January 3, so I have eons to make good on my not-resolution to learn more about MD.
The most helpful point I read today was this:
Unclear diagnoses and uncertain prognoses are common features of CMD, requiring well-coordinated multidisciplinary care and strong patient-provider relationships throughout the changing course of the disease.
Yep. THAT? That much I get.