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EB HEALTH CARE - PATIENT GUIDES

Psychosocial

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Support for parents caring for a child living with EB

Who is this booklet for?

This booklet is for parents of a child with any of the following types of EB:

  • EB simplex (EBS)

  • dystrophic EB (DEB)

  • junctional EB (JEB)

  • Kindler EB (KEB)

  • EB acquisita (EBA) - autoimmune, not genetic*

*There was no evidence found in this population group for the CPG. However, it is assumed that they would require the same support.

What is this booklet about?

Topics covered in this booklet include:

  • the parent-child relationship

  • wound care and pain management

  • life stages and transitions

  • impact on family life

  • care for the caregiver

  • communication

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