Rachel Nasuti, in this Oprah segment, has given me a first-hand opportunity to increase my awareness of Epidermolysis Bullosa. An inherited condition for which at the present time there is no cure. Epidermolysis bullosa (EB) is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. The condition is not contagious.
An estimated 1 out of every 50,000 live births are affected with some type of EB. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes equally.
This same Rachel Nasuti in this clip is my caseload student at Stevenson High School where I am a Special Education teacher. Our tremendous administrators, paraprofessional staff, teachers, and I along with Rachel's mom have worked tirelessly together this Rachel's senior year at Stevenson to accommodate her in the most effective ways we know possible.
Congratulations Rachel and to all those who suffer with EB daily along with their families for the BIG GIVE Mr. Pave and his friends was able to pull-off and what it means to EB awareness and research!
Learn more about Rachel at befriendeb.com and the condition Epidermolysis Bullosa at DebRA.org
Comments