[Congressional Record Volume 152, Number 63 (Friday, May 19, 2006)]
[Extensions of Remarks]
[Page E900]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                 EHLERS-DANLOS SYNDROME AWARENESS MONTH

                                 ______
                                 

                             HON. TOM PRICE

                               of georgia

                    in the house of representatives

                          Friday, May 19, 2006

  Mr. PRICE of Georgia. Mr. Speaker, May is the first annual Ehlers-
Danlos Syndrome (EDS) Awareness Month. Unfortunately, this syndrome, 
which affects nearly 60,000 Americans and 1.5 million people worldwide, 
is still largely unrecognized by the healthcare community.
  In 1986, the Ehlers-Danlos National Foundation was established to 
research, support, and awareness for those suffering from this 
potentially debilitating illness. A heritable connective tissue 
disorder, EDS, in its most severe circumstances, weakens the vascular 
system making it rupture. This potential for complication is coupled 
with an inadequate level of funding and recognition which all too often 
leads to a lack of diagnosis or a misdiagnosis. Early detection is the 
key to an effective treatment and affords the individual suffering from 
EDS the opportunity to manage their syndrome and enhance the quality of 
life.
  It is imperative that, in the absence of a cure, we in Congress join 
hands with the healthcare community to focus more attention on this 
matter. Accurate detection and sustained treatment will lead to a more 
fulfilling life for those afflicted with EDS. I am pleased to have this 
opportunity to applaud the efforts made by the brave men and women 
living with this illness as well as the countless friends, families and 
health professionals that have committed their time and expertise.

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