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EB HEALTH CARE - PATIENT GUIDES

Psychosocial

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Support for adults living with EB

Who is this booklet for?

This booklet is for adults (16+ years old) living 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:

  • wound care and pain management

  • self-advocacy and independence

  • life stages and transitions

  • when to get help

  • EB team/healthcare provider help

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