We’ve all seen shows depicting treatment of the disabled and chronically ill back “in the day” when they were either put on display as side-show freaks or locked away in asylums (out of sight; out of mind) so as not to offend civilized culture. Thank goodness we are much more enlightened these days, right? Wrong. A single episode of ABC Primetime News Medical Mysteries that aired January 25th, demonstrated that both antiquated attitudes about the disabled—that they are either freaks or should be invisible–are alive and well and considered fair game for exploitation to entertain the masses.
How did Primetime Medical Mysteries manage this feat? Primarily through a stunning combination of sloppy and sensationalistic reporting. The episode in question covered three rare medical conditions, situs inversus (reversed organs), disembarkment syndrome and Ehlers-Danlos syndrome. Of the three, they got (at least) two wrong.
The first segment about situs inversus called “Bodies Built Backwards” (http://abcnews.go.com/Health/story?id=2812911&page=1) followed two young girls as their families struggled to decide whether or when cardiac surgery would be required. Other than their cardiac issues, for which there was a surgical “cure,” these children were healthy. The episode completely ignored a condition called Kartagener syndrome (aka primary ciliary dyskinesia or PCD) that accounts for at least 25% of ALL cases of situs inversus. Unlike what was represented on the show, PCD is anything but benign. It is chronic, progressive and incurable and leads to severely impaired lung function. This outcome, of course, is not very pretty to look at, which perhaps explains why Primetime Medical Mysteries did not even mention the one disorder known to be closely associated with situs inversus in a story about situs inversus. They also failed to mention the vast array of situs abnormalities, many of them fatal, which
can occur during human development and ignored another rare and devastating disorder called Ivemark syndrome.
If Kartagener and Ivemark syndrome got the invisible treatment, Ehlers-Danlos syndrome (EDS) got the freak show treatment–with both barrels. This was not just implied in the reporting, Primetime Medical Mysteries came right out and advertised it with the tagline “Circus of Horrors.” (http://abcnews.go.com/Health/story?id=2815904&page=1) Supposedly the title was a reference to the employer of an EDS patient, but the underlying message–complete with gratuitously graphic photos (below, from ABC News Online)– could not be missed. EDS is a complex, painful, disabling and frequently fatal disorder. Thanks to ABC Primetime Medical Mysteries, however, it is bound to be remembered only as the “stretchy skin” disease, an inexcusable disservice to EDS patients and those who care for them.
Rare disease groups get short shrift in terms of research dollars, public awareness and resources for affected individuals. Like many rare diseases, both Kartagener
syndrome (PCD) and Ehlers-Danlos syndrome (EDS) are frequently misdiagnosed, not well-understood by the medical community or the general public, and rely on
under -funded, but dedicated patient groups to raise awareness, educate the public and find funding for research. For the most part, these patient organizations are on their own in these efforts because the media is not interested in rare diseases—unless, of course, there is a celebrity to champion the cause or it is bizarre enough to improve ratings. It is devastating that when we finally do get media attention, it only contributes to the misinformation we must battle daily.
It doesn’t require tremendous empathy or even common sense to know that Primetime Medical Mysteries handling of these stories was
dismissive and very offensive. Patients and families of affected individuals are waiting for ABC Primetime Medical Mysteries to correct their reporting.