[Congressional Record Volume 152, Number 57 (Thursday, May 11, 2006)]
[Extensions of Remarks]
[Page E803]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                          EDS AWARENESS MONTH

                                 ______
                                 

                         HON. JERRY F. COSTELLO

                              of illinois

                    in the house of representatives

                         Thursday, May 11, 2006

  Mr. COSTELLO. Mr. Speaker, I rise today to raise awareness to and pay 
tribute to those affected by Ehlers-Danlos Syndrome, EDS.
  The problems present in EDS include changes in the physical 
properties of skin, joints, blood vessels, and other tissues such as 
ligaments and tendons. EDS is a rare disorder, occurring in 
approximately 1 in 5,000 people; however, 90 percent of individuals who 
have EDS remain undiagnosed. The various forms of EDS are characterized 
by abnormalities in the chemical structure of the body's connective 
tissues resulting in some degree of joint looseness, fragile small 
blood vessels, and abnormal scar formation and wound healing. Some 
forms of EDS can present problems with the spine, including curved 
spine; the eyes; and weak internal organs, including the uterus, 
intestines, and large blood vessels.
  There is no cure for this condition, although researchers believe 
that specific research on EDS would not only benefit EDS patients with 
diagnostic tools and treatment, but would also benefit understanding of 
other connective tissue related diseases. Scientific researchers have 
made some significant advances in recent years in trying to understand 
this condition, but many scientific challenges still remain.
  Mr. Speaker, the Ehlers-Danlos National Foundation, a national 
nonprofit membership organization dedicated to controlling the effects 
of EDS as well as creating a support system for those diagnosed with 
this condition and their families, has designated May EDS Awareness 
Month. The goal of this effort is to educate the public about the 
nature and effects of EDS.
  Mr. Speaker, I urge my colleagues to become familiar with this 
disease and join us in recognizing the importance of an accurate 
diagnosis of EDS to ensure appropriate treatment and educational 
outreach. EDS Awareness Month gives all of us an opportunity to learn 
more about the condition. It will help us better understand the impact 
that EDS can have on people living with the disorder, as well as 
recognize the importance of early diagnosis and proper treatment. In 
short, we must enhance public awareness of this very misunderstood and 
often misdiagnosed disease.

                          ____________________