Peter Hentges (jbru) wrote,
Peter Hentges

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Our choices

I am frustrated and angry in the wake of the nasty revelation that was sprung on tnh recently. In short, a medication she needs to treat her narcolepsy so that she can be a productive member of society has been banned due to the misguided efforts of a consumer advocacy group.

My mild narcolepsy is treated very well with doses of Ritalin as needed. Teresa's predicament, however, made me think of the difficulty that erickavan goes through. She is steroid dependent, meaning that without some dose of prednisone daily, she ceases to breathe. The side-effects of prednisone include:

Abdominal or stomach pain or burning (continuing)
bloody or black, tarry stools
changes in vision
eye pain
filling or rounding out of the face
irregular heartbeat
menstrual problems
muscle cramps or pain
muscle weakness
pain in arms, back, hips, legs, ribs, or shoulders
pitting, scarring, or depression of skin at place of injection
reddish purple lines on arms, face, groin, legs, or trunk
redness of eyes
sensitivity of eyes to light
stunting of growth (in children)
swelling of feet or lower legs
tearing of eyes
thin, shiny skin
trouble in sleeping
unusual bruising
unusual increase in hair growth
unusual tiredness or weakness
weight gain (rapid)
wounds that will not heal

(And this is just one of several medications she takes daily.)

Ericka has many of these and yet can take nothing else to help her survive. The question becomes which is more important: living or not suffering the side-effects. When patients are informed about what the side-effects are, that should be a choice that they, in consultation with their doctors, make.

Nothing To No One--Paul Westerberg--Stereo
Tags: activism, health

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