We are extremely disappointed in your portrayal of Ehlers-Danlos Syndrome (EDS) as broadcast January 24, 2007 in ABC News™ Primetime Medical Mysteries. You damagingly picture what is a widespread and serious, at times fatal, condition in a circus atmosphere, literally and figuratively. You downplayed the effects on individuals who inherit EDS, and you virtually ignored the leading expert on EDS, Dr. Nazli McDonnell, MD, PhD, by using simplistic and misleading interview questions.

Unfortunately, your circus portrayal has diminished awareness of the dangers of EDS, further inhibited the already appallingly low diagnosis rate, and thus impaired access to effective treatment and management. EDS patients deserve the dignity and respect your program lacked. You shamed the news network of Howard K. Smith and Ted Koppel.

As always, Ehlers-Danlos National Foundation is ready to provide you with the facts, if you are ever interested in telling the story of EDS accurately. We are the leading national EDS network of physicians, researchers, patients, and family members, and we deal with this crippling syndrome on a daily basis.

The Board of Directors

Ehlers-Danlos National Foundation