PRINTER'S NO. 1705
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No.
336
Session of
2018
INTRODUCED BY MARTIN, GREENLEAF, EICHELBERGER, BARTOLOTTA,
FONTANA, DINNIMAN, VULAKOVICH, BROWNE, HUGHES, SABATINA,
HUTCHINSON, KILLION, SCHWANK, MENSCH, AUMENT, RAFFERTY,
SCAVELLO, COSTA AND BREWSTER, APRIL 24, 2018
INTRODUCED AND ADOPTED, APRIL 24, 2018
A RESOLUTION
Designating the month of May 2018 as "Ehlers-Danlos Syndrome
Awareness Month" in Pennsylvania.
WHEREAS, Ehlers-Danlos syndrome, also known as 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 hyperelastic 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, It is estimated that EDS is prevalent in 1 in 2,500
to 1 in 5,000 people with fewer than 200,000 cases diagnosed in
the United States each year; 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
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 persons 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 2018 as
"Ehlers-Danlos Syndrome Awareness Month" in Pennsylvania.
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