nadine Posted January 25, 2007 Report Share Posted January 25, 2007 Just wondering if those of you with this diagnosis saw this tonight.Interesting show tonight. I also saw the physician who was discussing the feeling the two women have of constant motion. I am still having balance problems after a flight a yr and a half ago. Had the platform test with many balance probs . Still trying to sort it all out Sorry- didn't see the other post that was up already!!! Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 25, 2007 Report Share Posted January 25, 2007 Yes I did!Dr. McDonnel is the doctor I'm signed up with for the study at NIH. I was surprised to see her on the program. She really brings the seriousness of this disorder out.It is true that there is a lot of pain.--------------Mine seems to increase with activity,and sitting up to long.A lot of people don't get it--it's truly pretty rough.........I'm supposed to go to the study some time this year, and the last I checked I'm still on the waiting list.It feels like my spine is falling apart at the seams...............and it doesn't help that I have a heavy rib cage, and a long torso.......... It's good that they showed the serious side of this disorder.Maxine :0) Quote Link to comment Share on other sites More sharing options...
mkoven Posted January 25, 2007 Report Share Posted January 25, 2007 I have to say though, I was disappointed by the amount of time they spent on the "freak show" aspect (the "oh gross! Do it again" aspect). As is being said on the ednf site, they spent more time on Gary's tricks and his three-legged dog than on the discussion of pain and fragility with Cyndy, Dylan, and Dr. McDonnell. Quote Link to comment Share on other sites More sharing options...
Maxine Posted January 25, 2007 Report Share Posted January 25, 2007 Yes, your right-------------they didn't spend nearly the time they should have with Dr. McDonnel showing how this stuff can affect lives, and the pain ect. They did show the serious side of the guy in the freak show showing his morphine patches that he uses for all the joint pain.They also didn't show that there is one form of EDS that is life threatening. At least I don't remember----did they? The aorta can be affected, and organ rupture as well.Maxine :0) Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 25, 2007 Report Share Posted January 25, 2007 They did mention it in passing maxine....I have mixed feelings about it. I felt like the guy was really trying to get out of this guy that it affected him more than he was saying, but the guy wasn't about to.I'm grateful they took the time they did, however short, to talk about the downsides of it though....not all fun and games...... Quote Link to comment Share on other sites More sharing options...
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