Posted: | April 20, 2022 04:11 PM |
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From: | Senator Scott Martin |
To: | All Senate members |
Subject: | May 2022 as "Ehlers-Danlos Syndrome (EDS) Awareness Month" in Pennsylvania |
In the near future, I will be reintroducing a resolution to recognize May 2022 as “Ehlers-Danlos Syndrome (EDS) Awareness Month” in Pennsylvania. EDS is a condition caused by a group of genetic disorders that affect connective tissue in the body, making them loose and unstable. EDS leads to regular dislocation of the joints, as well as fragile and hyper-elastic skin that bruises, scars and tears easily. There are about 200,000 cases of EDS diagnosed in the United States each year, however, due to the rarity of this condition, it often goes undiagnosed. Advances in treating EDS, as is the case with many lesser-known conditions, have been hampered over the years due to lack of common knowledge and limited treatment options. I personally first became aware of this serious condition only after hearing the unfortunate story of a constituent’s daughter whose life was cut short by complications associated with EDS. We need to change this treatment and cure trajectory for the condition and I believe that an educated public, combined with a well-equipped medical community, could make a significant difference in early and accurate diagnoses of EDS. I hope you will join me in co-sponsoring this resolution to continue to raise awareness for Ehlers-Danlos Syndrome. |
Introduced as SR296