Musings of a Medical Zebra

A Zebra Speaks

The Dish was wrong, again.

As Rare Disease Day grows near, I am reminded of the chain of events that surrounded my diagnosis. Two years prior to being diagnosed with Ehlers-Danlos syndrome (EDS), I decided to substitute teach. As with most things, I wasn’t comfortable just jumping right in.  I did what I often do before starting something new — I bought a book about the topic.  The book turned out to be very helpful. I used it each time I taught, which was only a handful of times. It took an entire year before any of the schools called. At that point, I usually had some EDS related ailment that prevented me from working.

If you’ve read my previous posts, you know that I eventually researched my symptoms and diagnosed myself with EDS.  When I approached my doctor with some info about EDS, she had her nurse call a geneticist to set up an appointment. The geneticist’s office called a couple days later to ask me a few health related questions. That evening, I sat down to watch TV. I started reading Dish Network show descriptions, and I came across something that sounded interesting. It was a Discovery Health show called Medical Incredible; the episode had something to do with brain surgery.

When the show began, I was somewhat disappointed because it didn’t seem to be about brain surgery. As I spent more time watching, I realized it was broken up into segments. Each segment was about a different medical condition. I kept watching, hoping to see the brain surgery segment.

I never saw anything about brain surgery, but what I did see was much more interesting. It was one of the last segments, and it began with a guy doing contortionist-type stuff. The words,  “But some people are born with rubbery joints that pull out without warning,” caught my attention. This sounded like EDS. I thought to myself, “But how could they be talking about EDS? The Dish description didn’t say anything about that.” The Dish has been known to list incorrect descriptions, though. This turned out to be one of those cases.

I recall calling to my husband who was in the other room, and then rewinding to the beginning of the segment so I could record it. I watched it three or four times that night. The next day, I did an online search for the guy in the segment. I found his e-mail address and I decided to contact him. He responded and forwarded my address on to a woman involved with an EDS support group a few hours away. I spoke to her a few times via e-mail. Her name seemed very familiar to me, but I couldn’t figure out why. One day I happened to pick up my substitute teaching book. I glanced at the names of the authors. The mystery was solved.

For those that would like to watch, I’ll give you a link to the show.  I think the folks at Discovery Health did a decent job with the segment. Ideally, they would have focused more about EDS manifestations in general, rather than focusing heavily on joint dislocations.  Dislocations are an important (and painful) part of the condition. However, as anyone that suffers from the condition knows,  there’s much more to EDS than joint dislocations.  EDS is complicated. Since the show only devoted a few minutes to the condition — I think the segment is a little over five minutes — they didn’t really have time to talk very much about the other manifestations. I guess I should just be thankful that EDS was mentioned, and I am.

Here’s the link:

Ehlers-Danlos Syndrome – Medical Incredible Segment

This entry was posted on Friday, February 27th, 2009 at 2:08 pm and is filed under EDS Stuff, Misc. Thoughts on EDS & Chronic Illness. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.

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