recessive inheritance pattern; and
WHEREAS, There are very few treatments and still no cure for
PBD-ZSD and related single enzyme deficiencies, which impact an
estimated 1 in 50,000 live births annually; and
WHEREAS, All patients seeking care for PBD-ZSD and related
single enzyme deficiencies suffer from a variety of health
issues, causing a severe strain on resources and on the delivery
of health care in the United States; and
WHEREAS, Individuals diagnosed with PBD-ZSD and related
single enzyme deficiencies are instilled with fear of an unknown
future with a life-threatening genetic disease and apprehension
over possible discrimination, including the risk of losing their
health and life insurance, their jobs and their chances of
promotion; and
WHEREAS, Friends, loved ones, spouses and caregivers of
patients seeking care for PBD-ZSD and related single enzyme
deficiencies must shoulder the physical, emotional and financial
burdens of the disease; and
WHEREAS, Individuals who have chronic, life-threatening
diseases like PBD-ZSD and related single enzyme deficiencies and
their caregivers have a predisposition to depression because of
their anxiety over pain, suffering and premature death; and
WHEREAS, Peroxisomal disorder awareness and education are
important to raise public awareness and understanding of PBD-ZSD
and related single enzyme deficiencies; therefore be it
RESOLVED, That the House of Representatives designate October
5, 2020, as "Peroxisomal Disorder Awareness Day" in
Pennsylvania.
20200HR1008PN4418 - 2 -
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