[Congressional Record (Bound Edition), Volume 152 (2006), Part 6]
[Extensions of Remarks]
[Pages 8089-8090]
[From the U.S. Government Publishing Office, www.gpo.gov]




                          EDS AWARENESS MONTH

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                         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

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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.

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