Connecting with Your Child’s School about EB

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your healthcare professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.
 
Heading back to school can be difficult for parents and children everywhere. When there's also the challenge of an EB diagnosis, it requires some additional planning and preparation. Much of that has to do with educating professionals who may be around your child with EB for great lengths of time. We have assembled a few tips here to help you do that.
 

  • Send a standard wound care supply box and instructions with your child. In the event that an onsite school nurse needs to apply a new bandage to your child, or the child will be going offsite for a field trip, you may wish to provide the teacher with a clearly marked supply box indicating order of bandage application as well as related items like scissors, gloves and ointments.
  • Pack a bag of extra clothing to leave stored in the classroom. This might include slippers, additional socks and a change of clothes should your child experience any painful or draining wounds, or other skin trauma from outdoor play or other activities.
  • Provide important contact information beyond parents' numbers. Consider giving your teacher and school nurse EB-specific contact information including the website for DebRA of America (www.debra.org) and the email address for DebRA nurse educator, Geri Kelly-Mancuso RN (nursegeri@debra.org). For more information about her role, as well as phone numbers and hours of availability, click here.
  • Share DebRA's classroom video that defines epidermolysis bullosa for those unfamiliar with it. DebRA offers a practical look at EB via video segments designed specifically for teachers to share with their students as well as their colleagues. This is a free resource produced by The Children's Hospital of Colorado. The two-part DVD "What is EB and Your Welcoming Classroom" introduces what it means for a classmate diagnosed with EB, dismisses myths or confusion about the skin disorder, and reviews ways staff and classmates can support the student. For more information about obtaining a copy of this DVD, click here.
  • Before your child is set to arrive, schedule a meeting with the teacher and, if possible, the school nurse. Sometimes the most successful strategy to educate others is to simply offer the opportunity to sit down and discuss what is at hand. You can answer educators' questions and pose your own to get a sense of the protocol they must follow at their school. During such a conversation, you may also discover some gray areas yet to be worked out and discussed further.

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