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Senate Co-Sponsorship Memoranda
Senate of Pennsylvania
Session of 2013 - 2014
Regular Session
MEMORANDUM
| Posted: | March 19, 2013 01:47 PM |
|---|---|
| From: | Senator Lawrence M. Farnese, Jr. |
| To: | All Senate members |
| Subject: | Resolution Designating May 2013 as Ehlers-Danlos Syndrome Awareness Month in Pennsylvania |
| I plan to introduce a resolution designating the month of May 2013 as Ehlers-Danlos Syndrome Awareness Month in Pennsylvania. A constituent suffering with Ehlers-Danlos Syndrome brought the disease to my attention. It took six years for her condition to be definitively diagnosed. This little-known, potentially fatal, genetic disease group affects up to 1 in 5,000 people around the world. There are six major types of Ehlers-Danlos Syndrome, each characterized by distinctive features. Characteristics of this group of genetic mutations involve the connective tissue and include instability, joint dislocations, hyperelastic skin that easily bruises, scars and tears, as well as arterial and organ rupture, excessive internal bleeding, shock, stroke and premature death. There is no routine screening for Ehler-Danlos Syndrome and no cure has been found for the disease. Diagnosis can be evasive for many; however, bringing the disease to the attention of the public as well as educating and supporting research within the medical community could go a long way in ensuring early and accurate diagnoses of the condition. I hope you will join me in recognizing Ehlers-Danlos Syndrome and supporting increased research and knowledge of the disease to improve the quality of life of its sufferers. |
Introduced as SR132