On May 10, I plan to introduce a resolution designating May 2016 as Ehlers-Danlos Awareness Month in the Commonwealth of Pennsylvania.
The first purpose of this resolution is to raise awareness of this rare disease that encompasses a group of widely variable inherited connective tissue disorders affecting skin, ligaments, joints, blood vessels and other organ systems. Ehlers-Danlos Syndrome (EDS) is characterized by instability, joint hypermobility and dislocations, tissue weakness, muscle hypotonia, hyperelastic skin that easily bruises, scars and tears, bleeding, osteoarthritis, shock and stroke. Vascular EDS, one of six rare genetic subtypes ranging from mild to severe, can cause arterial, intestinal or uterine fragility or rupture. EDS can present in newborns, but can affect anyone of any age. Children with EDS may need to avoid physically stressful activities and contact sports to prevent joint strain and damage. Treatment is limited to drugs that manage or minimize symptoms, physical therapy and surgical intervention in some cases.
The second purpose of this resolution is to recognize the important work and research done by a collaboration of nurses, social workers, pediatricians, physical therapists, orthopedists, surgeons, rheumatologists, neurologists, dermatologists, pain control specialists, cardiologists and genetics teams.
I hope you will join me in sponsoring this resolution. |
