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.