In the near future, I plan to introduce a resolution declaring October 25-31, as “Epidermolysis Bullosa Awareness Week” in Pennsylvania, more commonly known as Butterfly Children Awareness Week.

“National Epidermolysis Bullosa Awareness Week” begins October 25th and ends October 31st each year, as declared by the 109th Congress in 2006.

Epidermolysis Bullosa (EB) is a group of rare disorders caused by a mutation in one of 18 genes. People with EB share the lifelong challenge of extremely fragile skin that blisters and tears from minor friction or trauma.

Wounds caused by EB may be widespread, heal slowly and are prone to life-threatening infections. 50% of one’s body may be covered in bandages due to EB. Some typical complications may include infections, anemia, corneal abrasions, cancer and more.

Epidermolysis Bullosa effects approximately 200 children every year in the United States, which is estimated to be 1 out of every 20,000 births. There is no cure for EB.

With skin as fragile as butterfly wings, EB patients are known as “Butterfly Children.” For those struggling with this life-changing disease, this resolution will help to bring awareness and support to affected individuals across the commonwealth.

Please join me in co-sponsoring this resolution.