February 28, 2007
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