Share:
Senate Co-Sponsorship Memoranda
Senate of Pennsylvania
Session of 2023 - 2024
Regular Session
MEMORANDUM
| Posted: | May 15, 2024 05:20 PM |
|---|---|
| From: | Senator Scott Martin |
| To: | All Senate members |
| Subject: | May 2024 as "Ehlers-Danlos Syndrome (EDS) Awareness Month" in Pennsylvania |
| In the near future, I plan to reintroduce a resolution to designate May 2024, as “Ehlers-Danlos Syndrome (EDS) Awareness Month” in Pennsylvania. EDS is a group of genetic disorders that affect connective tissue, causing it to become loose and unstable. This can lead to frequent joint dislocations, as well as fragile, hyper elastic skin that is prone to bruising, scarring and tearing. Those dealing with the condition experience chronic pain, need specialized treatments for routine healthcare such as dental work and risk deadly complications like vascular and/or organ rupture. According to the most updated statistics from the Ehlers-Danlos Society, Classical EDS can be found in 1 of every 20,000-40,000 individuals and Vascular EDS can be found in 1 of every 100,000-200,000 individuals. Despite advances in treating EDS, progress has been hindered by limited awareness and treatment options. My personal awareness of this condition grew after hearing the tragic story of a constituent’s daughter whose life was cut short by complications related to her condition. It is imperative that we alter the trajectory of treatment and research for this condition. I firmly believe that an informed public, coupled with a well-equipped medical community, can significantly improve early and accurate diagnoses of EDS as well as improve long-term treatment options. I hope you will join me in co-sponsoring this resolution to continue to raise awareness for Ehlers-Danlos Syndrome. |
Introduced as SR296
Memo Updated: May 15, 2024 05:21 PM