This two-part video 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.
“What is EB?” (Part I)
What is EB (PART I) 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.
“Your Welcoming Classroom” (Part II)
Your Welcoming Classroom (PART II) 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 part of the DVD is for school personnel only.
Title 1: Overview of Content
- 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
Title 2: 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- Depression: Be aware of psychiatric symptoms (i.e., withdrawn, isolated, sadness) Talk with parents May need psychiatric evaluation and support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
