[Dysphagia] OT: ABC TV Prime Time's show on Ehlers Danlos Syndrome

[bonnieh4455 at sbcglobal.net (Bonnie Heintskill)]

ABC TV had info on their website about their upcoming segment on EDS tonight.  Unfortunately, they are sensationalizing it on their website as well as on the quick promo on Good Morning America.  No one has seen the whole show yet, so we don't know if Cindy and Dylan will have any quality air time on the show.  Obviously, this is NOT what EDSers are like  - they are not circus freak acts.

If you know of anyone with EDS or have treated a patient with EDS, can I ask a favor? Write to ABC TV and let them know that Gary Turner is NOT the "face" of EDS.  Many EDSers can't work due to chronic and debilitating pain, many health problems, etc.

Thanks in advance for any help.

http://forums.go.com/abcnews/Primetime/forum?start=0&forumID=10&byThread=true

info on ABC website was changed from 3 pages, including a quote from Dr. Nazli McDonnell, the researcher at NIH/NIA that EDSers have seen. As of this morning, only one page remains and Dr. McDonnell's statements have been removed.

http://abcnews.go.com/Health/story?id=2815904&page=1