Medical Mysteries SUCKED

I can't put into words how upset I am about ABC's Medical Mysteries show that had a segment on Ehlers-Danlos syndrome this week. If any of you saw it, you know exactly what I am talking about.
I am at a loss as to how to handle this now. So many friends and family watched (please don't have let great-grandma have seen) and that stinks. But at least they will kind of believe me when I tell them how inaccurate the show was. What worries me the most is all of the support staff that my daughter deals with on a daily basis who watched. UGH. I can't undo what they have seen, and now I feel like instead of having a blank slate to teach to, I have a misinformed community to try to change their views. That's a heck of a lot harder. Plus, I have to live with the fact that *I* was the one who made all of those calls, sent all of those e-mails, and had the meetings ASKING them to watch it! Because, I naively believed that ABC wouldn't air false information. If it had been E, or the SciFi channel, or something like that, I wouldn't have done it. But ABC? ABC is *supposed* to be a good channel with shows that have real information. I guess I was wrong.

I feel sorry for all of those people who poured their hearts, souls, resources, and time into this taping. Many of them belong to online groups I'm on. These are people who suffer daily, and yet they tried to take time and be well and helpful to ABC - because they were led to believe that it would HELP the EDS community. They put aside their own lives to try to help reach out to others and let them know what Ehlers-Danlos is, how to get help, and treatment. Now they feel terrible because ABC abused that, and instead wasted air time to put on garbage. Come on, no one can tell me that they are being serious and trying to help people when they show a guy with paper clips all over his face, stretching his skin in a circus, and walking his three-legged dog. PLEASE!

There are several groups working on getting this fixed. As I hear more I will post it here.

If you did not see the show - don't bother. Please.


Girl, Dislocated said...

I saw clips of it and read some of the transcripts. It was positively ridiculous. I have no problem joking around about EDS, but it was not ABC's place to present EDS as nothing more than a freakshow, especially since this may be the only exposure many people have to the disorder.

A lot of groups are linking to this site:

It's a letter you can fill out and print then send to ABC. Maybe there's a chance all the letters will make ABC stop and think.

Anonymous said...

I have EDS and saw the program. Honestly, I didn't see much of a problem with it. He dealt with his disease using humor. I've diagnosed people with EDS (I'm an MD) and use myself as an example of how many people with EDS can live a normal life (though not all can). It reminded me of the documentary Sick: The life and death of Bob Flanagan. He was a masochist to help him deal with the pain of cystic fibrosis.

Anonymous said...

Hey, I saw that show a couple of years ago when it aired in the UK. I hadn't heard of EDS before then, but the show didn't make me think it was funny. It made me want to research EDS and find out more.

I'm sure the circus guy increased viewings because people would tell their friends to watch it and he's one of the reasons I have remembered the name "Ehlers-Danlos Syndrome" and learned more about it today.

I completely understand why you are angry about the video, but wanted to let you know that some people who view it from a completely neutral viewpoint won't have found it funny. I'm sure a lot of people were interested in the other people on the video instead.

Best wishes