PRINTER'S NO. 790
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No.
123
Session of
2023
INTRODUCED BY MARTIN, BARTOLOTTA, LAUGHLIN AND COSTA,
MAY 31, 2023
REFERRED TO RULES AND EXECUTIVE NOMINATIONS, MAY 31, 2023
A RESOLUTION
Designating the month of May 2023 as "Ehlers-Danlos Syndrome
Awareness Month" in Pennsylvania.
WHEREAS, Ehlers-Danlos syndrome (EDS) is a group of genetic
disorders affecting connective tissue in the body, characterized
by looseness, instability and dislocations of the joints and
fragile, and often hyper-elastic, skin that bruises, scars and
tears easily; and
WHEREAS, In extreme cases, EDS can cause unpredictable
arterial and organ rupture that can lead to acute pain,
excessive internal bleeding, shock, stroke and premature death;
and
WHEREAS, In 1936, EDS was named after the medical research
and contributions of Edvard Ehlers in 1901 and Henri-Alexandre
Danlos in 1908; and
WHEREAS, According to the National Institutes of Health, it
is estimated that the combined prevalence of all types of EDS is
1 in 5,000 individuals worldwide; and
WHEREAS, There is no routine screening or cure for EDS, and
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individuals must seek a diagnosis from a health care provider
that is knowledgeable in the symptoms of EDS; and
WHEREAS, EDS is frequently misdiagnosed or undiagnosed,
resulting in great frustration and discomfort for affected
individuals and their families; and
WHEREAS, The symbol of EDS is the zebra because no two zebras
are the same, just as no two patients with EDS are the same; and
WHEREAS, Lack of knowledge of EDS, combined with varying
symptoms that can be different in each individual, has hampered
diagnosis and treatment efforts for those affected; and
WHEREAS, While limited modern research on EDS exists
currently, there is hope that research will be increased in the
near future; and
WHEREAS, Treatment is limited to drugs that manage or
minimize symptoms, physical therapy and surgical intervention in
some cases; and
WHEREAS, Collaboration among nurses, social workers,
pediatricians, physical therapists, orthopedists, surgeons,
rheumatologists, neurologists, dermatologists, pain control
specialists, cardiologists and a genetics team is key; and
WHEREAS, A network of EDS support groups further connects
affected individuals and caregivers, raises public awareness and
promotes related research and funding within the medical
community; therefore be it
RESOLVED, That the Senate designate the month of May 2023 as
"Ehlers-Danlos Syndrome Awareness Month" in Pennsylvania.
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