PRINTER'S NO. 1020
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
201
Session of
2015
INTRODUCED BY D. COSTA, KIM, COHEN, YOUNGBLOOD, DeLUCA, BAKER,
READSHAW, BISHOP, THOMAS, DONATUCCI, HEFFLEY, CALTAGIRONE,
HARHART, SONNEY, DUSH, WHEELAND, MILLARD, LONGIETTI, ACOSTA,
SCHWEYER, KINSEY, DiGIROLAMO, HENNESSEY, McNEILL, MARSICO,
ROSS, O'NEILL, FARINA, BROWNLEE, MAJOR, MAHONEY, GINGRICH,
KIRKLAND, MURT AND GILLEN, MARCH 26, 2015
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
MARCH 26, 2015
A RESOLUTION
Designating the month of May 2015 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, caused by various defects in the synthesis of collagen
which provides support to many body parts such as the skin,
muscles and ligaments; and
WHEREAS, EDS is 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, There are six types of EDS, defined according to the
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signs and systems that are manifested in a set of major and
minor diagnostic criteria for each type; and
WHEREAS, Though the first possible description of EDS was
made by Hippocrates in 400 B.C., Edvard Ehlers defined it in
1901 as a nameless, distinct disorder in a case history that
included lax joints, hyperextensible skin and a tendency to
bruise; and
WHEREAS, In 1908, Henri-Alexandre Danlos published a second
case history on the disorder and in 1936, it was suggested that
the disorder be named Ehlers-Danlos Syndrome to honor the
previous research on the disorder; and
WHEREAS, It is estimated that EDS is prevalent in 1 in 2,500
to 1 in 5,000 people; and
WHEREAS, The significant risk of injury associated with EDS
prevents those affected from enjoying activities many of us take
for granted, such as contact sports and weightlifting; and
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 as all individual
symptoms must be evaluated and cared for appropriately; and
WHEREAS, Early diagnosis and screening is key to properly
managing the symptoms of EDS and improving the quality of life
for affected individuals; and
WHEREAS, EDS is frequently misdiagnosed or undiagnosed,
resulting in great frustration and discomfort for affected
individuals and their families; and
WHEREAS, The prognosis for an individual with EDS depends on
the type of EDS and the individual as life expectancy can be
shortened for those with the vascular type of EDS due to the
possibility of organ and vessel rupture; and
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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 genetic testing and research will
be increased in the near future; therefore be it
RESOLVED, That the House of Representatives designate the
month of May 2015 as "Ehlers-Danlos Syndrome Awareness Month" in
Pennsylvania.
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