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EB HEALTH CARE - PATIENT GUIDES

Psychosocial

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Support from your EB team/healthcare providers

Who is this booklet for?

This booklet is for people living with any of the following types of EB or 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:

  • who are the EB team/healthcare providers?

  • what can the EB team/healthcare providers do?

  • the role of the EB team/healthcare providers

  • the importance of working together with the EB team/healthcare providers

  • the importance of EB awareness education

  • the importance of working on pain management together

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