Free School DVD

This 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.

This free DVD is available by clicking here to place an order.

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  Be aware of psychiatric symptoms (i.e., withdrawn, isolated, sadness)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