Media Controversy and Rare Diseases (PCD and EDS in the News)

I have lots to post about--it's been an exciting week--but until I do, here's some reading for thought, especially for all of you out there who belong to the Rare Diseases Club. By now, I'm sure you've read or heard a lot about the backlash from ABC's "Medical Mysteries" show and the effect such portrayals of rare diseases have on the people who live with them, but here are two thoughtful and informative posts:

MickeyMusing's blog takes aim at "freak show" tendencies in the media and specifically touches on PCD (primary ciliary dykinesia). I must admit, it's not often I see my near and dear PCD in the news, and this article underscores the reality for the millions of people living with rare diseases: the burden is on our shoulders to educate, inform, and enlighten.

(On that note, see my sidebar to get to the PCD Foundation!)

Yanub's "Moblizing Against Misrepresentation" is a constructive answer to the current debate over how patients with EDS were cast on a recent episode of "Medical Mysteries."

I show Tod Browning's "Freaks" to students in my class (Constructions of Health in Contemporary Literature) in an effort to explore how image and language influence perceptions of "normal"--perhaps we're not as enlightened in 2007 as we'd like to believe..??