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Physiotherapy for EB: Guidelines and recommendations

This page provides an overview of physiotherapy guidelines and recommendations for people living with epidermolysis bullosa (EB). 

Physiotherapists help people affected by injury, illness or disability through movement and exercise, manual therapy, education and advice. 

If you live with epidermolysis bullosa (EB), you may see a physio as a child or adult. This could be to:

  • Help you maintain your range of movement
  • Improve strength and stamina
  • Maintain your independence in walking
  • Receive advice about exercises that will help with EB pain relief and keep you functioning well 

If you attend one of the four EB specialist centres  or an EB clinic, you can talk to your healthcare team about seeing a physio. If your EB care is managed by your GP, you can talk to them about a referral. 

You can ask to be referred through your GP if you aren’t already under the care of one of the specialist centres. If your GP is uncertain about referring you or you’re unsure about what to request, our DEBRA EB Community Support Team can help you get referrals to the right specialists. We can also provide resources including a template letter to your GP.

Best physiotherapy practices for adults and children with EB 

The physiotherapy for EB Clinical Practice Guidelines publication includes loads of detailed information. Its aim is to help with understanding the ways in which physiotherapy can help people living with EB. It’s based on research from around the world and put together by clinicians working in EB. 

These guidelines are very involved and can be quite heavy reading. However, you’ll find some really useful information on the best physiotherapy practices for EB, including in table two on page five. 

For children with EB, more individual treatment plans can be gained from assessment by a paediatric physiotherapist. You can receive a referral to a paediatric physio through your GP or a local paediatrician. 

If you are under the care one of the EB specialist centres, please talk to your clinical team if you need any help. 

   

Swimming and water exercises for EB 

In this video from DEBRA UK Members’ Weekend 2023, Michelle Wood, Specialist Physiotherapist at Great Ormond Street Hospital (GOSH), talks about the benefits of moving in water if you live with EB. 

Watch the video below to hear about how being in water allows gentle supported movement. It can ease EB pain, sooth stiff joints, strengthen muscles, help with walking and range of movement, and give you an all-body workout. 

Some of the practical advice she gives can be used in any swimming setting, whether you’re at a public pool or enjoying the sea: 

  • Treated swimming pool water is generally safe for people with EB to swim in. Picking up an infection has not been documented. 
  • Some people find the water temperature at public baths a bit cold, or they are not welcomed due to having visible wounds. Instead, some people choose to visit hydrotherapy centres, book a private pool session (special schools or private schools often hire their pools out), or swim in the sea. 
  • You may want to wear water shoes to protect your feet from pool tiles/stubbing toes or from stones or sand on beaches. Neoprene light socks/shoes are available readily and can help. 
  • Leave any dressings on during your time in water – this protects your skin from further damage and makes it easier/safer for anyone helping you. 
  • Use floatation aids but choose soft foam options like pool noodles. 
  • Always check and plan how you will get in and out of the water, and where you will get changed. 

 

Suggestions from members living with EB based on their experiences 

  • Some people wear all in one sunsuits/rash onesies over their dressings to help them stay in place and for the dressings/wounds to be less noticeable. 
  • If you have dressings or wound care to manage, you will need to plan for an area to change after being in water. Some people use surf robes/towel ponchos and go to somewhere comfortable rather than changing at a pool/beach. 
  • Sea bathing can be great fun and some people say the salt water, despite a little stinging, is helpful for the skin.
  • Freshwater swimming in lakes and rivers may be less suitable as it will not have any infection protecting factors, whereas a treated pool or saltwater does. 
  • Many members have learnt to swim and enjoy swimming as fun and exercise.  

If you have any more suggestions that you’d like to share with others living with EB, please get in touch with us at feedback@debra.org.uk.