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EB HEALTH CARE

PATIENT GUIDES

EB is a very complex condition with many different aspects of health and social care to consider. To help you with your daily management of EB, we have developed a range of EB care guides, or “patient versions” as they are formally known, that you can view here and download for free.

 

Patient versions "translate" the information and recommendations from best clinical practice guidelines (CPGs), created for health professionals, into a format that is more easily understood by everyone. We are creating EB care guides/patient versions for each new CPG we publish.

 

Below, you can find all the EB care guides we have created as well as information on the ones we are currently developing. Our EB guides are specifically designed to be used by people who have EB and by those who care for them. They can also be useful to share with family members, friends, and colleagues so they can understand more about the condition.

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Laboratory diagnosis

Information for people living with EB, their families, and caregivers

 

Topics covered in this booklet include:

  • what EB is

  • the importance of getting an accurate diagnosis when someone is suspected of having EB

  • the steps in making an accurate EB diagnosis

  • the latest EB laboratory diagnosis methods and considerations

  • the connection between analysis results and decision-making for EB patient care management

  • inheritance patterns and genetic counselling possibilities for patients and their families

  • how EB laboratory diagnosis works in practice

  • who should perform EB laboratory diagnoses and where

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Occupational therapy

Improving participation in daily activities for children living with EB

Topics covered in this booklet include:

  • what is an occupational therapist and what do they do?

  • activities of daily living (ADLs)

  • instrumental activities of daily living (IADLs)

  • using your hands

  • fine motor skills

  • oral feeding skills

  • how your child’s occupational therapist can help

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Occupational therapy

Improving participation in daily activities for adults living with EB

Topics covered in this booklet include:

  • what is an occupational therapist and what do they do?

  • activities of daily living (ADLs)

  • instrumental activities of daily living (IADLs)

  • using your hands

  • fine motor skills

  • oral feeding skills

  • how your occupational therapist can help

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Podiatry

Dystrophic nail care for people living with EB

Topics covered in this booklet include:

  • what are dystrophic nails in EB?

  • what are the recommended treatments?

  • helpful tips

  • wound care and pain management

  • staying active and mobile

  • how your/your child’s podiatrist can help

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Podiatry

Footwear advice for parents caring for a child

living with EB

Topics covered in this booklet include:

  • pre-walking stage of your baby

  • why is footwear important for EB?

  • footwear advice

  • cushioning materials, insoles, and socks

  • other considerations

  • your child’s environment

  • wound care and pain management

  • staying active and mobile

  • how your child’s podiatrist can help

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Podiatry

Footwear advice for adults living with EB

Topics covered in this booklet include:

  • why is footwear important for EB?

  • footwear advice

  • cushioning materials, insoles, and socks

  • other considerations

  • wound care and pain management

  • staying active and mobile

  • how your podiatrist can help

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Podiatry

Hyperkeratosis (callus) care for adults living with EB

Topics covered in this booklet include:

  • what is hyperkeratosis (callus) in EB?

  • what are corns in EB?

  • neurovascular hyperkeratosis

  • wound care and pain management

  • staying active and mobile

  • how your podiatrist can help

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Psychosocial

Support for parents caring for a child living with EB

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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Psychosocial

Support for adults living with EB

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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Psychosocial

Support from your EB team/healthcare providers

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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Skin and wound care

Guidance for adults with EB and their carers

Topics covered in this booklet include:

  • the fundamentals of wound care management

  • dealing with infections

  • factors impacting healing

  • itch/pruritus

  • squamous cell carcinoma (SCC)

 
 
 
 
 
 
 
 
 
 
 
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