PRINTER'S NO. 1641
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No.
296
Session of
2024
INTRODUCED BY MARTIN, TARTAGLIONE, BROWN, FONTANA, PHILLIPS-HILL
AND HAYWOOD, MAY 28, 2024
REFERRED TO RULES AND EXECUTIVE NOMINATIONS, MAY 28, 2024
A RESOLUTION
Designating the month of May 2024 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, however it is likely that this
is an underestimation; and
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WHEREAS, There is no routine screening or cure for EDS, and
individuals must seek a diagnosis from a health care provider
who 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, dentists and a genetics team is key
as the management of EDS requires the use of a multidisciplinary
approach; 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 2024 as
"Ehlers-Danlos Syndrome Awareness Month" in Pennsylvania.
20240SR0296PN1641 - 2 -
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