What is EB and Your Welcoming Classroom DVD

What is EB and Your Welcoming Classroom DVDThis two-part DVD was developed by the multidisciplinary Epidermolysis Bullosa Team at The Children’s Hospital of Colorado, and is endorsed by debra of America. It is a guide for making the school experience supportive and academically challenging for students with Epidermolysis Bullosa.

The first part of the DVD, What is EB, is designed to familiarize students and teachers with some of the issues facing children with dystrophic EB. This kid friendly segment is hosted by a child with EB and other children with EB and their classmates and teachers share their perspectives about EB in the school environment. The goal is to help students with EB feel more accepted and less isolated in the classroom.

The second part of the DVD, Your Welcoming Classroom, is specifically designed to provide teachers, school nurses, therapists and administrators with the information and tools to better understand EB. It is designed to improve communication between the child, family, medical and educational communities.

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The following is an overview of the content of Your Welcoming Classroom (for School Personnel Only):

  • What is EB?
  • Genetic, not contagious
  • Different types
  • Integrating the student into Classroom
  • Special needs
  • Interview with parents
  • Develop plan
  • Classroom Management
  • Socialization
  • Welcome EB students and involve them in activities
  • Educate other students about EB (i.e., go to different classrooms)
  • Educate other students about abilities and limitations
  • How can other students help?

Understanding the Issues of Importance for students with EB

  • Swallowing Esophageal blisters or scarring Respect “no” if unable to eat Have snacks available (i.e., puree foods, liquids)
  • Bandages Protect skin Help heal skin Overheating
  • Odor Help other students understand Speak with nurse and/or parent Be aware of infections
  • Depression Be aware of psychiatric symptoms (i.e., withdrawn, isolated, sadness) Talk with parents May need psychiatric evaluation and support
  • Pain Pain control and management Rate pain, on scale 0 – 10 Pain medications
  • Bathroom Set up bathroom time (i.e., 10 minutes) Reward program or goal sheets
  • Parents Communicate regularly Written back and forth log Common knowledge and goals
  • Control Need sense of control Self-advocacy Recognize talents and strengths
  • Good Days and Bad Day Status fluctuates Pain Schedule time to check in with the nurse Allow breaks



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