Assembly Resolution No. 2438

BY: M. of A. Rules (Rosenthal L)

MEMORIALIZING Governor Kathy Hochul to proclaim
October 25-31, 2024, as Epidermolysis Bullosa
Awareness Week in the State of New York, more
commonly known as Butterfly Children Awareness Week

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

WHEREAS, It is the sense of this Legislative Body to memorialize
Governor Kathy Hochul to proclaim October 25-31, 2024, as Epidermolysis
Bullosa Awareness Week in the State of New York, more commonly known as
Butterfly Children Awareness Week, in an effort to raise public
awareness and understanding of Epidermolysis Bullosa; and

WHEREAS, Epidermolysis Bullosa (EB) is a rare, genetic, connective
tissue disorder that is characterized by fragile skin and recurrent
blister formation, inside and outside the body; today, there is no cure;
and

WHEREAS, Severe forms of EB cause patients to live with constant
pain and scarring; the worst forms of EB lead to eventual disfigurement,
disability and often early death; phenotypes and outcomes run the gamut,
from mild to severe; the more severe cases cause fatalities in the first
year of life, and in many cases, children who suffer from the more
severe forms do not live into their third decade of life; and

WHEREAS, There are five types of EB: EB simplex (EBS), Junctional EB
(JEB), Dystrophic EB (DEB), Kindler EB (KEB) and EB Acquisita (EBA); EBS
is the most common form of EB, while the other forms are relatively less
common and affect the patient more severely; and

WHEREAS, The presence and type of EB is differentiated by the gene
that is affected, and the particular protein that is produced by that
gene, therefore, EB can be the result of a mutation in genes that
produce one of 18 different structural proteins; and

WHEREAS, It has been estimated that one out of every 20,000 live
births which is approximately 200 children a year, is affected with some
type of EB; the disorder occurs in every racial and ethnic group
throughout the world and affects both sexes equally; and

WHEREAS, The only treatment for EB is daily wound care, preventative
bandaging and pain management; the simple act of bathing is a tortuous
process that may take more than three hours when children are often
bathed in a diluted bleach or vinegar solution to fight the ever present
threat of infection; and

WHEREAS, EB has a long list of secondary complications including
anemia, growth retardation, infection, bacterial sepsis, renal failure,
cardiomyopathy, corneal abrasions, malnutrition, premature tooth decay
and squamous cell carcinoma; and

WHEREAS, With skin as fragile as a butterfly wing, EB patients are
dubbed "Butterfly Children"; on the outside, physical wounds prevent
them from normal daily activities enjoyed by other children; the
slightest friction produces agonizing wounds that can cover up to 75% of
their bodies; and

WHEREAS, There is a frightening lack of institutional knowledge; in
other words, most physicians, nationally and internationally, are
unaware of the disorder and its complexities, thus resulting in less
than optimal treatment options for even the most common secondary
complications; and

WHEREAS, Due to public and private insurance coverage limitations,
caregivers may lack adequate wound care supplies that are essential in
not only preventing infection and supporting wound closure, but also
preventing new wounds from everyday activities, such as wearing
clothing; many surgical procedures are only performed safely in three or
four hospitals in the United States; and

WHEREAS, Researchers from around the globe are investigating new
therapies to treat and cure EB, thereby leading to a better quality of
life; and

WHEREAS, It is imperative that there be greater public awareness of
this serious health issue, and more must be done to increase activity at
the local, State and national levels to support the patients as well as
their families; now, therefore, be it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim October 25-31, 2024, as
Epidermolysis Bullosa Awareness Week in the State of New York, more
commonly known as Butterfly Children Awareness Week; and be it further

RESOLVED, That a copy of this Resolution, suitably engrossed, be
transmitted to The Honorable Kathy Hochul, Governor of the State of New
York.