Information & support Treatments & healthcare Skin & wound care For most people living with EB, wound care is a big part of daily life. Knowing how to lance blisters, manage different wound types, treat pain and itch, prevent and treat infection and when to seek medical advice are all crucial in EB wound care. There is a range of support to help individuals and families deal with the challenges of living with EB. There are four main specialist EB Centres in the UK where patients with EB living in any of the four nations may be referred for regular healthcare and support. The specialists at these centres, some of which are part-funded by DEBRA UK, are very knowledgeable and experienced in how to care for skin, including how to lance blisters and what treatments are available to relieve symptoms. You can ask to be referred to one of the centres through your GP. If your GP is uncertain about referring you or you are unsure about what to request, our Community Support Team can help you get referrals to the right specialists. We also provide resources including a template letter to your GP, which you can find in the resources section below. The following information provides a general overview of how to care for blisters and minimise skin damage, along with links to useful resources at the bottom. This information is from the 'Skin & Wound Care' guide for people living with EB, along with other sources mentioned in the resources section at the bottom, and has been reviewed by EB clinicians. Advice may vary between clinicians and may differ according to the type of EB and your individual circumstances, so you should always follow the advice provided by your healthcare team. Contents: General skincare advice How to care for blisters Wound healing Equipment & supplies Infections Scarring Managing pain Support Resources General skincare An important part of any treatment plan for people living with EB will be about preventing trauma or friction to the skin to reduce the frequency of blistering and therefore reduce pain, itch and scarring. Everyone's experience of living with EB is slightly different and advice may depend, in part, on the severity and type of EB. It is therefore advised that you seek support from an EB specialist for your individual circumstances and EB type. General advice often includes: minimising walking long distances and ‘economising’ - saving your skin/feet for essential journeys avoiding bumps and scratches avoiding rubbing the skin – parents may need to adapt how they lift babies and children finding comfortable clothes that don't rub against the skin and avoiding bulky seams some people living with EB report that wearing natural smooth fibres such as silk, bamboo and 100% organic cotton can help reduce irritation from clothing some people find that heat can cause blisters or makes them worse so find that keeping the skin as cool as possible helps choosing comfortable footwear that doesn't have hard seams inside. You can find much more information in the foot care guides. using aids and adaptations as suggested by your healthcare team. These may be simple solutions such as insoles or a perching stool, or assistance with moving around such as a wheelchair or grab rails in the bathroom. Always ask your EB specialist as some equipment or mobility aids may not be appropriate for your EB asking others to be considerate of your needs. People living with EB describe the pain of skin damage that occurs as similar to third degree burns, and in some cases, there may be deep loss of skin over large areas. Specific care is required to limit pain, itch and other symptoms associated with blistering. If you're not sure how to care for your skin, or that of someone in your care, always refer to a specialist. You can find contact details for the specialist centres as well as what to do in an emergency here. Your EB Community Support Manager can also provide practical advice including knowing your rights and the obligations of education providers and your workplace to ensure that pain relief can be administered at the correct times. Talking to those around you about EB may also help you to cope with the challenges of pain management. Back to top How to care for blisters Whilst there are things you can do to minimise skin trauma, blisters are inevitable and sometimes spontaneous, appearing without any obvious cause. Blisters are also not self-limiting, so may get bigger if left alone. Bigger blisters = bigger wounds, so managing blisters is an important part of skin care routine and lancing them as soon as possible is important. Please refer to the resources section for further information on skin care. The aim is to prevent the blister getting bigger by draining off any fluid, leaving an opening large enough to stop the blister re-sealing and re-forming, yet protecting the raw skin underneath. Use a sterile needle – the size is important so speak to your healthcare provider to make sure you are using the correct size. You can ask your GP or EB specialist centre for a supply of sterile needles. You will need a sharps box and to arrange a collection service for the disposal of needles. Lance at the lowest point of the blister so that gravity can help drain fluid away. Gently apply pressure with a gauze or clean cloth to assist fluid drainage – some people prefer to use a clean syringe to remove fluid. Leave the roof of the blister intact to protect the raw skin underneath and reduce the possibility of infection. Remove any dead skin or debris from around the blister, whilst leaving the roof of the blister intact – dab don’t rub to limit skin damage. If part of the raw skin underneath is left exposed like an open wound, you may want to dress that area using non-stick dressings advised by your healthcare provider. Do not use normal sticky plasters as these can cause further damage to the skin. If a sticky plaster is used in error, there are adhesive removal products available to limit damage to the skin. It may be useful to provide non-stick dressings and adhesive removal to your child’s school, childcare provider or to carry around with you for use at appointments, e.g. when giving blood. It may be helpful to keep the wound moist as dryness can make itching worse. There are creams available to help with this. Your healthcare team can take you through caring for blisters and recommend dressings and products that are appropriate for your skin and type of EB. Blisters can also appear internally – in the mouth, anal area and other mucous membranes, which can be distressing. Please talk to your EB healthcare team for support on how to treat these blisters. Back to top Wound healing In many cases, once a blister is lanced it will heal and no longer cause pain. Although some people experience pain and itch without the presence of blisters. An area of skin that has blistered may become even more fragile, especially following re-occurrence of blisters in the same area. Sometimes a wound doesn’t heal, or heals then breaks down again, which can be painful and makes it more susceptible to infection. This is known as a chronic wound. Talk to your EB specialist to identify why the wound isn’t healing so that they can help, e.g. changing dressing type, using a cream or dressing with anti-fungal/anti-bacterial properties or clearing an infection. There are also other factors that can affect how well your wounds heal, e.g. nutrition, sleep and reducing stress are all important. Contact your EB Community Support Manager for wellbeing support or your EB specialist for advice in these areas. Back to top Equipment and supplies Many pharmacies offer a prescription delivery service so check with your local pharmacy. There are also specialist suppliers who can deliver dressings and other medical supplies direct to your home. One of these providers is Bullen Healthcare who have extensive experience supporting the EB Community. They consistently hold a large stock of products and supplies commonly prescribed to people living with EB and have even created a dedicated team to help with all EB queries and orders. To find out more about accessing medical supplies and getting the appropriate prescription medication, speak to our Community Support Team. Back to top Infections Open wounds or raw skin can become infected, this needs urgent treatment to prevent further pain and damage. 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 increased pain. 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. Talk to a specialist to discuss the best nutritional plan for you. Back to top Scarring Wounds and blisters can heal with a scar, although not everyone will experience scarring, especially those with EB Simplex (EBS). Scarring is part of the body’s natural healing process when tissue is damaged and can be mild, superficial and temporary, or extensive and require further intervention. Generally, the more scar tissue there is, the more fragile that area can be so there are products you can use, such as padding for these vulnerable areas of skin. Extensive scarring in more severe forms of EB can lead to issues where sometimes surgery is advised. We will soon be publishing further information about surgery for EB patients. There are also other treatment options available which you can discuss with your EB healthcare team. If you have any concerns about scarring or need support, the EB specialist healthcare teams have extensive experience in this area and can discuss your concerns along with any emotional support you may need. Back to top Managing pain It can be very difficult dealing with the pain associated with wounds and the blistering of skin. For milder forms of EB, over-the-counter painkillers may provide relief but stronger options are available via your healthcare provider. Always discuss the use of painkillers, even over-the-counter ones with your healthcare team. Reducing the time taken to do dressing changes and selecting the appropriate dressings and materials can help to reduce pain. You can also use templates to cut dressings in advance, therefore reducing the time that the individual experiences distress. 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. The EB specialist centres will be able to advise about a variety of options for pain management and have extensive expertise in this area. However mild or severe your pain is, they should be able to help. 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. Visit the Pain & itch section for further information and advice. Back to top Support Living with EB can be difficult but our dedicated team can help to ease the burden with emotional, practical and financial support for the individual with EB and their family and carers. Becoming a DEBRA member for free also means you can attend events, meet other people living with EB in person or virtually and much more. Some families living with milder forms of EB may pass down information and advice to younger generations to help them cope with symptoms, especially if they haven't been able to get a diagnosis or the support they need through their GP. We recommend that you also contact us as we can help you get a referral to EB specialists for current advice and for information on local support services. Or if you prefer not to be referred we can support you in other ways. However, making sure you are known to specialist services is important as it contributes to the advancement of EB treatments. We have referral letter templates you can use if required to provide to your GP when asking for a referral. I’ve always suffered with feet that blister really easily – the skin tears and it's incredibly painful. I was in my second year at University studying dance when the problems intensified. My feet would be bloody and my blisters would be infected. I sought a diagnosis and was referred to the specialist EB team at Solihull Hospital. Thanks to the support I have received from the EB team, I’m no longer struggling on my own. I now know how to care for my feet and keep the blistering to a minimum, dramatically reducing the pain I’m in. Jess, has EB Simplex (EBS) Back to top Resources Skin & Wound care for people living with EB - a comprehensive guide to skin & wound care, reviewed by EB specialists Foot care for people living with EB - a comprehensive guide to caring for skin and nails on the feet, reviewed by EB specialists NHS website - general information on EB, symptoms and treatments DEBRA Community Support Team - practical, emotional, financial and advocacy to access medical support 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 Back to top of page