Senate Resolution No. 1464

BY: Senator GRIFFO

MEMORIALIZING Governor Andrew M. Cuomo to proclaim
May 2019, as Ehlers-Danlos Syndrome Awareness Month
in the State of New York

WHEREAS, It is the custom of this Legislative Body to recognize
official months that are set aside to increase awareness of serious
health conditions that affect the lives of citizens of New York State;
and

WHEREAS, Attendant to such concern, and in full accord with its
long-standing traditions, this Legislative Body is justly proud to
memorialize Governor Andrew M. Cuomo to proclaim May 2019, as
Ehlers-Danlos Syndrome Awareness Month in the State of New York, in
conjunction with the observance of National Ehlers-Danlos Syndrome
Awareness Month; and

WHEREAS, The Ehlers-Danlos Syndromes are a collection of 15
multi-systemic, heritable disorders affecting connective tissue, the
most abundant tissues in the body; and

WHEREAS, With the exception of the hypermobile Ehlers-Danlos
Syndrome, each type is a distinct entity defined by mutations in a
single or small set of genes; common features among the types include
joint hypermobility, skin fragility, chronic pain, and fatigue; more
severe types, such as Vascular Ehlers-Danlos Syndrome, can be
life-threatening, as fragile blood vessels and internal organs can
spontaneously rupture; and

WHEREAS, It is estimated that the prevalence of all types of the
syndrome affect at least one in 5,000 people worldwide; and

WHEREAS, A network of Ehlers-Danlos Syndromes support groups can
help connect those managing life with the disease, as well as better
informing the health care community and the public; and

WHEREAS, Early and accurate diagnosis can provide the opportunity to
create life-saving medical plans and ensure the quality of life; and

WHEREAS, There is currently no treatment for the Ehlers-Danlos
Syndromes and no known cure; further medical research and awareness can
bring hope to those suffering from this disease; and

WHEREAS, It is imperative that there be greater awareness of this
serious health condition, and more must be done to increase activity at
the local, State and National levels; now, therefore, be it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim May 2019, as
Ehlers-Danlos Syndrome Awareness Month in the State of New York; and be
it further

RESOLVED, That copies of this Resolution, suitably engrossed, be
transmitted to The Ehlers-Danlos Society and The Honorable Andrew M.
Cuomo, Governor of the State of New York.