Here is the link for the APF Action Alert that has a template and
sample wording to make responding to the ABC Primetime Medical
Mysteries program easy for everyone:

https://secure2.convio.net/apf/site/Advocacy?
pagename=homepage&page=SplashPage&id=201&JServSessionIdr001=2i1pn86n52
.app6b

The first page reads as follows - and then clicking on TAKE ACTION
will take you to the second page with the template:

ABC's Feature on Ehlers-Danlos

ABC's Primetime Medical Mysteries program on January 24, 2007
featured a segment on Ehlers-Danlos Syndrome (EDS). EDS is a painful
disorder characterized by a defect in connective tissue, the tissue
that provides support to many body parts such as the skin, muscles,
and ligaments. Neither patients nor physicians fully understand the
complexities of Ehlers-Danlos Syndrome. EDS is a serious connective
issue disorder, which is incurable, disabling, and isolating. EDS
affects approximately 1 in 5,000 people. (That's nearly 50,000 in
the United States alone and most go undiagnosed.)

The Primetime program chose to focus on the freak show performance of
one individual whose primary EDS symptom is extremely stretchy skin,
rather than the actual symptoms as they present themselves in typical
EDS afflicted individuals. The other people interviewed for the
segment Dylan Keil, his mother, Cindy, and Nazli McDonnell, MD, PhD,
an EDS expert
from the National Institutes of Health National Institute on Aging
were given only a very minor showing in this program. Portraying
Ehlers-Danlos Syndrome in the sensationalized manner in which they
did actually causes harm and delay in diagnosis and treatment for
those with EDS.

The impact of chronic pain in EDS and available treatment options
were downplayed in the program. Every person deserves to live a life
free of pain. However, until medical professionals and the general
public recognize EDS for the serious and legitimate disorder it is,
many EDS patients are accused of being malingerers or drug-seekers.

The actual facts about EDS and awareness of the disorder must be made
known in order for the lives of those who are affected by it to
improve and for lives to no longer be needlessly lost to EDS due to
inaccurate or lack of diagnosis. To learn more about Ehlers-Danlos
Syndrome, please visit the Ehlers-Danlos National Foundation web site
at http://www.ednf.org/

TAKE ACTION NOW!