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House Co-Sponsorship Memoranda
House of Representatives
Session of 2015 - 2016
Regular Session
MEMORANDUM
| Posted: | February 5, 2015 11:43 AM |
|---|---|
| From: | Representative Dom Costa |
| To: | All House members |
| Subject: | Resolution Designating May 2015 as “Ehlers-Danlos Syndrome Awareness Month” in Pennsylvania |
In the near future, I plan to introduce a resolution designating the month of May 2015 as “Ehlers-Danlos Syndrome Awareness Month” in Pennsylvania. Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders affecting connective tissue in the body, which provides support to many structures of the body such as skin, muscles and ligaments. Individuals with EDS suffer from looseness, instability and dislocations of the joints and fragile, hyperelastic skin that bruises, scars and tears easily. In extreme cases, such as the vascular type of EDS, it can cause unpredictable arterial and organ rupture that can lead to acute pain, excessive internal bleeding, shock, stroke and premature death. It is estimated that EDS affects approximately 1 in 2,500 to 1 in 5,000 people. Individuals with EDS must take important steps to prevent injury and protect their skin and joints, which leads many to avoid enjoying activities that we take for granted, such as contact sports and weightlifting. There is currently no cure for EDS and the syndrome is often misdiagnosed or undiagnosed, which delays proper treatment. Further, lack of knowledge of EDS among the public and medical community and the complexity of each individual case of EDS has led to limited diagnosis and treatment efforts for those affected. Please join me in recognizing May 2015 as “Ehlers-Danlos Syndrome Awareness Month” to bring awareness of this group of unfamiliar disorders to the general public and medical community and to encourage greater genetic testing and research to develop more effective treatments for those suffering from the disorders. |
Introduced as HR201