Brain Injury Care Provider

A guide to caring for those with Epidermolysis Bullosa

Epidermolysis Bullosa (EB) is a rare genetic disorder which makes the skin very fragile to touch, leaving it vulnerable to blister and wound.

Those with EB require tailored care to improve their quality of life, and to ensure they can properly manage their condition.

Understanding Epidermolysis Bullosa

It is crucial to understand EB before you can care for it, either for yourself or a loved one.

The condition mainly affects the skin, which makes it easier to blister and sore.

EB is split into 27 different types, with each type differing in severity.

How do I spot EB?

Usually diagnosed in babies and young children, the symptoms are generally obvious from birth. Yet, some milder forms of EB might not be recognised until adulthood.

If you suspect your child has EB, you will be referred to a skin specialist.

The symptoms of EB can vary depending on the type and its severity; the most common symptoms are delicate skin and being prone to blister.

Other symptoms include:

  • Skin that blisters easily
  • Skin infections
  • Thickening of the skin and nails

What is the treatment for EB?

There are treatment options available as well as the ones at Almond Care.

These include:

Skin care

  • Gentle bathing – use mild water and fragrance-free soap. Avoid scrubbing or rubbing the skin harshly, as this can result in blister formation
  • Pat the skin – pat the skin gently with a soft towel; try not to apply excess pressure to the skin
  • Moisturise – keep the skin hydrated using a fragrance-free, hypoallergenic moisturiser; this helps reduce the risk of skin damage

Wound management

  • Change the dressings – it essential to change the dressings of blisters or wounds regularly to prevent infection
  • Pain management – you might need pain relief to help ease the pain of EB; healthcare professionals can assist you with these medications

Nutrition and hydration care

  • A balanced diet – a healthy diet can support faster wound healing
  • Hydration – preventing dehydration through increasing your fluid intake will decrease the risk of skin issues

There is no cure for EB, with your help, you can improve the quality of life for any client including yourself.

Emotional care

As well as physical support, EB patients also need emotional support.

It can be emotionally challenging to live with the condition, but the help of your loved ones or a therapist or support group can help to improve the mental impacts this condition creates

Focus on improving the quality of life for the affected individual by providing opportunities for social interactions, hobbies, and personal growth

To stop yourself from feeling overwhelmed at your child’s diagnosis of EB, you can contact these support groups for help:

  1. DEBRA
  2. DEBRA International
  3. Cure EB

How can Almond Care help me?

At Almond Care, we have lots of different treatment options to ensure you find the right option for you or your loved one.

Our team of skilled workers use interventions and therapies to assist clients with EB but also provide support for their families.

The methods we provide include the treatment of blisters and dressings, manual handling, pressure sore prevention, nutrition management, and PEG feeding support.

We tailor our care packages to every client’s needs, supporting their everyday requirements and beyond.

EB can be a challenging condition to care for, but with the help from Almond Care we can make the process easier and stress-free.

Find out more about EB by visiting the NHS website here.

For information about how to care for someone with EB, please contact us here and one of our friendly team members will be in touch.


Call us today!

For a free, no-obligation discussion about our UK complex care in the home for brain injury, spinal cord injury, long-term ventilation, cerebral palsy, multiple sclerosis, muscular dystrophy and other neurological conditions, please click here or call 024 7610 2333.