Guide for schools & teachers: Supporting a child living with EB

EB Simplex (EBS)

In these forms of EB blistering may be localised to hands and/or feet, or generalised so that the whole body can be affected. Whilst blistering can be continuous, the skin does heal normally. Blistering may occur in the mouth or throat and, sometimes, a child who is not visibly very affected can be in considerable discomfort internally. These children frequently have a hidden disability – they look perfectly ‘normal’ but face considerable problems of mobility due to the pain of blistered feet. Some children describe the pain as ‘walking on hot coals’.

Junctional EB (JEB)

This affects about 10% of people with EB and causes lifelong pain and disability. Sadly, some children born with this condition die before they reach school age. Those that survive experience a range of severity. Many children suffer with damage to internal skin areas (e.g. oesophagus, airway and eyes), which all require careful management.

Dystrophic EB (DEB)

There are various forms of Dystrophic EB. Blistering is more likely to be extensive, both internally and externally, and heal with scarring. The process is cumulative so that the child with Dystrophic EB may have very obvious damage to his or her skin. Fingers may fuse and contract. Feet may be similarly affected. Under their clothing the child may have very extensive blisters that requires a lengthy and painful skin care routine at night and in the morning.

Kindler EB

Kindler EB (KEB) is a rarer form of EB. Skin blistering can occur at multiple and different levels within the skin, which begins at birth and is generalised with a tendency to affect the extremities. There can be skin discolouration and issues with gums and teeth.

In general, DEB is seen to be more severe than EBS. However, there are forms of EBS which have unusually severe symptoms and forms of DEB where the symptoms are not unduly intrusive.

As a consequence, the terms ‘mild’ and ‘severe’ will be used rather than referring to the diagnostic categories. The experience of the parent(s) and the school will soon determine what is relevant to a particular child.

To learn more about EB, please view this What is EB? infographic and visit the Support for you section of our website to see what additional support is available to people living with EB.

At present there is no cure or effective treatment for EB. Current treatment involves protecting the skin from injury and infection and limiting the extent of blisters.

All children with EB need skin care which is not required by other children. Families develop a daily routine of inspecting the skin and taking any necessary action. In the mildest forms of the condition this will involve identifying new blisters, bursting these so that the blister fluid can escape and keeping the affected area clean. In the most severe forms, where large areas of the body are affected with numerous new blisters appearing every day, the process will be very time consuming, often taking hours each morning and evening. This may involve soaking off dressings which have stuck to the skin overnight, bursting blisters, bathing the child, drying very gently and applying several layers of different types of dressings.

It is not difficult to imagine the stress and pain that a child (and parent) may have experienced before arriving at school in the morning or will face in the evening. However, even the child with very mild EB may be coming to school with a couple of newly burst blisters and several healing ones on the feet which, although not visible in school clothes, will be causing considerable discomfort.

Children with more severe EB are likely to have an Education, Health and Care Plan (EHCP) in place and also ongoing support from their EB nurse, local health and social care team and DEBRA EB Community Support Manager. 

Children with a milder form of EB may need support from the school to ensure that their needs are identified and assessed and that appropriate assistance is put in place. This will involve drafting an Individual Health Care Plan and asking parents to provide an ‘EB First Aid kit” of dressings, pain relief and needles for lancing blisters. The level of help a child needs varies, so it is important to identify this and plan accordingly.

The Department of Education guidance on supporting children with medical conditions:   https://www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3

You can also seek guidance from a DEBRA EB Community Support Manager who can help with advising on practical measures, providing information on EB for the teachers (and other children, if requested) and even with small grants for equipment.

Most children report that they find it helpful for the teacher or a Community Support Manager to tell the class a little about the condition, in particular that the condition cannot be caught and is not infectious. There are some story books where the child has EB that may be suitable to read in class or for teaching staff to understand more about EB (some of the books are targeted to adults):

• 30 Days of Hope for Joy Through a Child's Severe Illness
• Binky's Time to Fly (3-6 years)
• Binky’s Time to Fly (4-7 years)
• Cotton Candy on the Moon (5-12 years)
• Dear You (young adult)
• Golden Riders: Part 1 (10-14 years)
• Living with Epidermolysis Bullosa: A Compilation of Stories Written by Families Touched by EB

Children with EB may have a variety of special dressings, pain relief and needles to lance blisters. You will need to check your school policy on storage and administration and have a plan in place in case the child needs treatment during the school day. Children with more severe EB may have this provision as part of their EHCP. It is important to remember that ‘normal’ plasters, if applied to children with EB, might damage their skin when removed, so it is important to ensure that emergency wound coverings are available. A medical adhesive remover can be useful to keep at school.

Children with less severe EB sometimes find it difficult to ask for help, especially at secondary school where they may not want their peers to know about their EB or the impact it has on them. It might help if a trusted teacher can support the child to discreetly manage their dressings and pain – this will be easier if all teaching staff are aware of the issues.

Children living with EB should be encouraged to participate in PE in a way that is meaningful and safe for them. You will find it helpful to discuss their abilities with them and their parent(s) and their EB nurse, if applicable.

The PE lesson may need to be adapted for the child living with EB and they may need extra time, space and preventative dressings and/or pain relief. Swimming is an ideal activity for children living with EB and, although there may be some concerns over dressings and wounds, chlorinated pools are generally suitable for people living with EB. Please contact the EB nurse or community support manager for further support in exploring how a child living with EB can participate in swimming lessons.

Where equipment is required, these can be adapted – foam mats, foam balls or lightweight equipment can be used and are easily sourced. 

Children living with EB often experience some anxiety around PE lessons due to the fear of or actual pain and also anxiety over not being able to keep up with their peers and/or differences in appearance (e.g. PE shorts exposing dressings, wounds and scars). Involving the child in discussions and asking them to suggest what they can do will help. If a child reports they are in pain, you may need to suspend the activity. This should be taken seriously and fed back to the parent so that further adaptations or support can be put in place.

The Equality Act 2010 provides a single, consolidated source of discrimination law. It simplifies the law and it extends protection from discrimination in some areas.

In England and Wales, the Act applies to all maintained and independent schools, including academies, and maintained and non-maintained special schools. In Scotland, it applies to schools managed by education authorities, independent schools and schools receiving grants under section 73(c) or (d) of the Education (Scotland) Act 1980.

The Act makes it unlawful for the responsible body of a school to discriminate against, harass or victimise a pupil or potential pupil:

• in relation to admissions.
• in the way it provides education for pupils.
• in the way it provides pupils access to any benefit, facility or service.
• by excluding a pupil or subjecting them to any other detriment.

Northern Ireland is mainly covered by the Disability Discrimination Act 1995; visit nidirect.gov.uk for more information.

An example of indirect discrimination is when an organisation may have a policy which says that everyone must wear the same clothing or uniform. However, if someone requires specialist clothing because of the effects of their disability, but is prevented from wearing it, they could be put at a disadvantage compared with their peers.

Download this printable Spotlight on the Equality Act as featured in a previous edition of InTouch.

Assistive technology enables all individuals, including those with disabilities, to be more independent, self-confident, productive and better included in everyday life, education, employment and everyday living. Assistive technology can include small items of equipment (e.g. pencil grips, which can make the task of writing easier). Many of our members request information about pencil grips for school.

Simple adaptations (e.g. padded ergonomic chairs, soft cushions, cooling fans) can make a big difference to a child living with EB and their comfort/pain levels during the school day.

You may need to consider whether children need additional support with writing (due to pain and blisters on their fingers and hands), extra time in exams or even specialist technology or a scribe. 

Other technical items that could help a child living with EB include:

• software packages that convert text to speech
• voice recognition software
• soft overlays for computer keyboards
• tracking balls mouse instead of using a standard mouse
• soft touchscreen tables or soft keyboard

DEBRA, the national charity that supports individuals and families affected by EB, provides an enhanced EB Healthcare Service, in partnership with the NHS, to deliver optimal healthcare to children and adults living with EB and community support staff to work directly with individuals and families.

DEBRA also provides information and help to anybody living or working with EB, including carers and healthcare professionals, and funds pioneering research to find effective treatments and, ultimately, a cure for EB.

DEBRA’s EB Community Support Team

The DEBRA EB Community Support Team directly helps people living with EB by forging close working relationships with specialist EB nurses and other health and social care professionals to connect clients with the services they need to improve their quality of life. The team provides members with information and support to tackle a wide range of social issues including benefits, finance, housing, education and employment.

A team working remotely across the UK, the community support managers offer support whilst meeting people in their own homes, clinics, events and via email and calls. Every day is quite different – may be supporting a family at the time of bereavement or the birth of a child with EB or helping families in times of change (e.g. if a child is starting primary school or making the transition to higher education or moving home to live independently and looking at work options). The team also offers peer support and social opportunities for people to get together, such as Members’ Day.

EB Specialist Centres

The EB Healthcare teams may be able to provide further training and support to school staff, either remotely, a visit in person or via a training day. This is usually arranged for the children living with EB that have higher healthcare needs. The DEBRA EB Community Support Team works closely with the healthcare teams so that all children living with EB have access to information and support.