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Learn more about epidermolysis bullosa

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What's Epidermolysis Bullosa?

Epidermolysis bullosa. Fragile, painful skin

Epidermolysis bullosa (EB) is a rare, inherited skin disorder which causes the skin to be fragile.

Slight friction and bumps can result in people with EB suffering blisters and wounds due to their skin lacking vital proteins which provide its strength.
 
EB is complex and, therefore, advice and treatment is usually provided by a multi-disciplinary team within a specialist medical setting.
 

Causes of Epidermolysis bullosa


The condition is inherited in one of two ways:

  • One parent has EB (this is known as dominant inheritance).
  • Neither parent has the condition but both carry a faulty gene (known as recessive inheritance).
     

Different kinds of EB


There are four main types of Epidermolysis bullosa:

  • EB simplex.
  • Junctional EB.
  • Dystrophic EB.
  • Hemidesmosomal EB.


EB is a complex disorder and advice should always be sought from a multi-disciplinary team within a specialised medical setting.

 


Information for parents

 
Download a FREE Information Leaflet for parents with a new baby with EB. Written by Jacqueline Denyer and EB Nurse Consultant who has vast experience in caring for babies and children with EP.

 

Download the new babe with EB 

What's To Do About EB?

Get good advice and choose dressings carefully

Always follow the guidance of your specialised medical team. When blisters form, they should be lanced with a sterile needle at their lowest point to prevent them from spreading.

If the roof of the blister remains intact and is on a part of the body where it will not be knocked or rubbed, a dressing is generally not necessary.

Where the roof of the blister has been lost, an injury has caused skin loss, or for those who have chronically unhealed wounds, a variety of dressings are available.

The dressing selected depends upon:

  • Personal preference.
  • If the wound is infected.
  • Depth of wound.
  • How wet the wound is.
  • Where the wound is on the body.

 

It is very important to use a dressing which will not stick to the wound or the fragile skin around it as removing the dressing may make the wound worse or tear the skin. We recommend Mölnlycke Health Care dressings with Safetac® Technology.

Infection

When the skin is broken, the barrier to infection is lost. It is important to keep the wound clean. You may find that using a cream or ointment containing an antiseptic helps to keep infection at bay.

Signs of infection include:

  • Delayed healing or enlargement of the wound.
  • Fever.
  • Poor feeding, diarrhoea and vomiting in babies.
  • Pus.
  • An increase in pain.
  • Odour.
  • Redness.

Not all of these may be present but if you are concerned that a wound may have become infected, see your doctor immediately.

EB hurts

EB is a painful condition. Blisters and wounds cause pain, but pain may also arise from other sites. The doctor and staff at your specialised EB Centre can prescribe medication to reduce pain.

Choosing the correct dressing will help reduce pain when the dressing is changed. If your skin is very fragile, seek advice from your EB nurse before using any new dressings.

Help

Mölnlycke Health Care dressings have a gentle surface which prevents the dressing from damaging the wound or skin when it is removed. This is called Safetac Technology. If your skin is very fragile, seek advice from your EB nurse before using any new dressings.

If you want to learn more about pain and how you can minimise it, please visit our Pain centre.

 

Gentle dressings for painful wounds

EB can be very painful especially when the roof of the blister has been lost, an injury has caused skin loss or in the case of chronically unhealed wounds.
 Fortunately, a variety of dressings are available. Several factors will influence the choice of dressing for the wound. For example, it is very important to use a dressing which will not stick to the wound or the fragile skin.
 We recommend Mölnlycke Health Care dressings which feature Safetac® Technology. They:

  • Have a gentle surface.
  • Minimise pain at removal.
  • Seal the wound effectively.
  • Help prevent blister formation.

Of course, medical advice should be sought before using any new dressings.
There are a range of recommended, relevant products with Safetac.

Mepitac

Mepitac®

  • Gentle fixation tape for sensitive/fragile skin
  • Minimises pain and skin damage at removal due to a Safetac layer close to the skin
  • Is soft and comfortable
  • Water proof
  • Low risk of skin irritation and allergy

Mepilex®Transfer

  • Protects wounds and the skin
  • Use on exuding wounds
  • Is conformable to the wound, provides comfort
  • Has a Safetac layer making it less painful to remove
  • Fluid is transferred from the wound to a secondary dressing
  • Does not harm the surrounding skin
  • Mepilex Lite

    Mepilex®Lite

    • Protects wounds and skin
    • Use on wounds with less wound exudate (wound fluid)
    • Is very thin, soft and comfortable
    • Has a Safetac layer making it less painful to remove
    • Keeps the wound moist which makes it heal faster
    • Does not harm the surrounding skin

    Mepilex®

    • Cushioning and protection
    • Use on exuding wounds
    • Is very soft and comfortable
    • Has a Safetac layer making it less painful to remove
    • Absorbs exudate (wound fluid)
    • Keeps the wound moist which makes it heal faster
    • Does not harm the surrounding skin
    Mepitel

    Mepitel®

    • Protects blisters and wounds
    • Will not disrupt wound tissue or blisters
    • Is placed between the blister/wound and an absorbent dressing or pad
    • Has a Safetac layer making it less painful to remove
    • Can be left on for up to 2 weeks (more info on the product page
    EB Support

    Understanding and information for EB sufferers

    EB can be a very distressing condition, especially in babies and young children. Support, understanding and information are vital and a lot can be found online, through patient groups and self-help networks. Here are few links that may help.

    Mölnlycke Health Care is not responsible for the content on any of these sites or for any advice you may receive from them.
     

    DebRA


     
    www.debra.org.uk
     

    EB Patient


     
    www.ebpatient.com
     

    NHS

     
    www.nhs.uk/conditions/Epidermolysis-bullosa

    Contact

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