Senate Resolution 394 Printer's Number 2027

PENNSYLVANIA, October 8 - WHEREAS, EB simplex 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 1 of 18 different structural

proteins; and

WHEREAS, It has been estimated that 1 out of every 20,000

births, approximately 200 children a year, is affected with some

type of EB, and the disorder occurs in every group throughout

the world, affecting both sexes equally; and

WHEREAS, With skin as fragile as a butterfly wing, EB

patients are dubbed "Butterfly Children"; and

WHEREAS, The awareness week for EB is commonly referred to as

"Butterfly Children Awareness Week"; and

WHEREAS, On the outside, physical wounds prevent them from

normal daily activities enjoyed by other children as the

slightest friction produces agonizing wounds that can cover up

to 75% of their bodies; and

WHEREAS, Unfortunately, there is a lack of long-term research

surrounding EB, and most physicians, nationally and

internationally, are unaware of the disorder and its

complexities, which results in less than optimal treatment

options for even the most common secondary complications; 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 is greater public

awareness of this serious health issue, and more must be done to

20260SR0394PN2027 - 2 -

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