Young girl with EB having wounds dressedTwo of the most common symptoms associated with the genetic skin blistering condition, epidermolysis bullosa (EB) are pain and itch.  

These symptoms occur due to the frequent and sometimes extensive blistering that can be present all over the body and internally due to missing or abnormal protein(s) caused by a faulty gene, which means the skin doesn’t bind together as it should. The location of the missing or abnormal protein dictates the type of EB and therefore the layer of skin affected.

There is currently no cure for EB and at DEBRA UK we are working hard to change this, but there are treatments that can help with pain and itch as well as other symptoms. Your healthcare team will be able to advise which treatments are suitable in individual cases, but below is a general overview of the causes and treatments for these two common symptoms.  

Pain and itch support, contents:


Causes of pain

There are many complex reasons why people with EB experience pain. Identifying the cause of pain is important so that pain reduction advice can be offered. If you are experiencing pain and require support, the EB healthcare teams at the specialist centres will be able to advise and support you with pain management. For emotional support and practical help, for example, financial support to fund items which may help with pain and itch, please get in touch with our Community Support Team. 

Some of the reasons for pain are:

  • blister sites and blister healing
  • areas of skin loss
  • open wounds
  • lesions on mucous membranes (tissue which secretes mucus and lines cavities and organs, e.g. the mouth, eyelids, stomach etc.), the cornea (front part of the eye) and from non-cutaneous (unrelated to the skin) complications. 
  • infections
  • application of incorrect dressings or topical treatments 
  • when dressings are changed
  • internal blistering 
  • trauma to the skin like a rub or bang
  • overheating
  • sensitivity to products such as laundry detergents and deodorants
  • clothing materials
  • unknown causes.

Once you know why you are experiencing pain (even if there are unknown causes), you can work with your healthcare team towards a pain reduction plan. Below are some general tips on minimising pain for people living with EB, however, what works for one person may not work for another so you should always seek advice from your EB healthcare team for your individual situation and EB type.

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Dressing changes 

The dressing changes required to manage EB can be extremely distressing and painful yet are a lifelong and important part of regular, sometimes daily skin care, wound and blister management.

Blisters should be lanced as soon as possible to prevent them causing further pain and damage; bigger blisters = bigger wounds. The formation of blisters and breakdown of skin can cause significant pain, although some people living with EB also report pain when they don’t have blisters. Once a blister has been lanced, it will need to be dressed to protect the wound while the skin tries to heal. 

You can find further information about caring for blisters on the skin & wound care page and a link to the patient guide in the resources section at the bottom of this page.

The most difficult thing about EB is seeing your child in pain, knowing that the care you are giving is causing so much distress. 

Katie, mum to Jamie who has severe EB

The time taken to complete dressing changes can vary greatly and so for optimum pain reduction it is advisable to complete dressing changes in the least time possible. There are many different dressings available, and selection of the most appropriate dressing is important, e.g. severely affected newborns need minimal handling and may require dressings that can remain in place for several days. Also, non-adhesive dressings are crucial to reduce further damage and pain. If an adhesive dressing is applied in error, there are adhesive removal products available which may limit damage to the skin. 

The specialist healthcare teams have extensive expertise in this area and will be able to advise on the right treatment plan in individual cases. Contact your healthcare specialist or if you don't have access to a specialist, contact our Community Support Team who can help with referrals.

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Open wounds or raw skin can become infected and may need urgent treatment to prevent further pain and damage. A streptococcal (bacterial) infection can be particularly painful. 

One of the most common causes of infections is poor hand hygiene so thorough hand washing and clean equipment are essential when lancing blisters and changing dressings. 

Signs that an area of skin has become infected include: 

  • redness and heat around the area 
  • the area leaking pus or a watery discharge  
  • crusting on the surface of the wound 
  • a wound not healing 
  • a red streak or line spreading away from a blister, or a collection of blisters 
  • a high temperature (fever) of 38C (100.4F) or above 
  • an unusual odour. 

Contact your GP or healthcare provider at the first sign of infection. Treatment may include antiseptic creams, antibiotics, gels, specialist dressings and for longer term support you can boost immunity via nutrition and dietary supplements. Nutrition is especially important as nutrients can be lost through wound fluid. Talk to a specialist to discuss the best nutritional plan for you as nutritional advice for people with EB may differ to that of people without EB.

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Stress & sleep

Stress and lack of sleep can be an issue when dealing with painful wounds and can negatively impact wound healing and the ability to deal with pain. These symptoms can be improved through stress management techniques, nutritional supplements, medication, meditation, mindfulness and other wellbeing interventions. Your healthcare team will be able to support you to find the right treatment for you and there are some links in the resources section for additional support.

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Pain relief 

Pain and itch support: Medication unit at the rare diseases centreThere are many different options to help reduce pain depending on the type and severity of pain, including creams, gels, oral medication and psychological interventions. 

In some instances, with mild EB, over-the-counter pain medication such as paracetamol may provide relief, but often stronger medication is required and is available through healthcare providers. Morphine may be prescribed, especially prior to dressing changes and oral sucrose solution* has shown to be beneficial prior to and during procedures in newborn babies. 

Please note, the NHS advises that children under 16 should never be given aspirin as there is a small risk it could trigger a serious condition called Reye’s Syndrome.

Some people living with EB find that doing things they enjoy, such as listening to music, spending time with others, getting outside, playing games or watching TV provide a useful distraction. Using mindfulness and breathing techniques amongst other wellbeing interventions can also be helpful. The teams at the specialist centres can support you with pain management techniques or a crisis plan for pain management and the resources section contains links to organisations that offer support on pain management techniques. 

Our research strategy strives to achieve cures, manage symptoms and improve quality of life. The current portfolio of research projects includes pre-clinical laboratory work, research into gene and cell therapies and drug re-purposing, as well as projects driving a change in symptom relief for wound healing and cancer therapy. Visit our research section for more information on current projects. 

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One of the most frustrating things for me is the itching. It’s like my whole body is on fire and I have ants crawling all over me. It’s so overwhelming and no one without EB can understand how bad the itch actually is.

Maya (pictured), has recessive dystrophic EB* and is a DEBRA Ambassador

*Visit the 'What is EB?' pages for information on the different EB types.

Pain and itch support: Maya Spencer Berkeley - DEBRA AmbassadorItching (pruritus) is defined as “an unpleasant sensation that provokes scratching.”

With EB, itching can be very painful, and scratching, which can be difficult to resist can cause new skin trauma and lead to the breakdown of wounds that are nearly healed. Scratching can also lead to an inflammatory reaction, which further strengthens the itch sensation.


Some causes of itching are: 

  • healing blisters 
  • dry skin
  • overheating
  • inflammation
  • persistent skin damage due to re-occurrence of blisters in the same area 
  • some opiates/opioids may increase itch
  • sensitivity to products such as laundry detergent, deodorants and other products which come into contact with the skin
  • stress can increase itch - see the resources section below for support in dealing with stress
  • Anaemia can cause itching
  • unknown or a combination of factors.

Good skin care is important in reducing itch. You can find some general advice on the skin and wound care page. Although the urge to scratch can be difficult to resist, some people find patting the area gently with a cool damp cloth provides some relief or taking a cool bath. If severity requires, there are medications available such as topical creams and ointments.

Other helpful tips include ensuring you are hydrated enough, avoiding overheating and being mindful of the products that come into contact with your skin. Relaxation, breathing and mindfulness techniques can provide relief, often in combination with medical and other behavioural treatments. Different solutions work for different people so it's best to discuss your individual needs with your healthcare team.

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> Laboratory Diagnosis booklet - a comprehensive guide to testing & diagnosis for people living with EB on DEBRA International website
> DEBRA Community Support Team - practical, emotional, financial and advocacy to access medical support
> NHS website - general information on EB & diagnosis
> Action on Pain - general support and advice for people affected by chronic pain
> Pain Concern - aim to improve the lives of those with pain and those who care for them
> Meditainment - free meditation for pain relief
> Mind charity - general support for coping with sleep problems


Research references:

*Oral sucrose solution reference

Please note, for professionals working with EB patients, there are a range of guides in the professionals section of the website.