Secondary school with EB

Secondary school is a milestone for every young person as they transition from being the oldest in the school to the youngest in a new environment and amongst new friends. Starting secondary school can mark the beginning of when children become increasingly independent of their parents.

If you need support, contact our DEBRA EB Community Support Team on 01344 771961 and select Option 1.


A new beginning

Young people living with EB may have lots of questions about how their body will change, whether they should tell their new friends about their EB (and how their friends may react), how they will find their way around a new school and whether they will be able to go on school trips.

Many young people find they have to change how they manage their EB when starting secondary school. You may no longer want someone else to lance your blisters for you, or you might find that you have longer distances to walk around the school and from class to class or that you want to walk to school with your friends. The information below mentions some practical considerations and where to go for support to manage how you are feeling or if you are struggling with confidence or bullying.


Choosing a secondary school

Think about what is important to you. Do you want to go to the same school as your primary school friends? Would you rather attend a secondary school that is closer to home? Do you have a school preference due to its Ofsted report or academic record?

If you have the chance to look around when applying for secondary school, it might help for you and your parents to meet with certain people within the school relevant to your care needs. It is helpful to tell the prospective secondary school about the impact EB has on you and if you have a SEN or EHC plan already in place with your current school.

Key staff within the school

Some of the people you may want to meet with include:

  • SENCO (special educational needs co-ordinator) – A SENCO’s responsibilities include supporting all students who have additional physical or emotional challenges, and it is important they understand how EB impacts you. The SENCO can support you with a plan to catch up on schoolwork if you have to miss school because of your EB, or they can also help discuss other measures that can help (e.g. additional time in exams if you have difficulty writing, adaptations in the classroom – soft grip pens, printed class notes).
  • Year Lead – Most schools have a member of staff responsible for supporting and overseeing students in particular year groups. It is good for the Year Lead to be aware that you are living with EB as they can liaise with your form tutor and other key staff within the school if you have any difficulties during the school year.
  • School Nurse/Medical Welfare Officer – Normally your first point of contact for any health issues during the school day, the school nurse or medical welfare officer should be made aware of your health needs. It is normally their role to be involved in drafting an individual health care plan.
  • Pastoral care staff – Pastoral care staff look after the welfare of students, supporting students and their families to access learning and with additional home or emotional support. EB is a rare condition and, once they understand more about EB and how it impacts you specifically, they can help to support you with the condition. If you find any aspect of school or home life to be a challenge, the pastoral care staff can be helpful in supporting you directly or helping you find more appropriate support (e.g. counselling).

Some young people are happy for others to know about their EB and find it helps when their fellow classmates understand why they have frequent days off school or wear trainers instead of school shoes. You might find that a small group of people can provide support and friendship or even help with tasks like carrying your bag and letting you know what has happened at school if you are absent.

Support at secondary school

There are many ways in which your secondary school can help you make the most of learning and other opportunities through some minor adjustments to stop your EB from ‘getting in the way’. These adjustments could be as simple as a hall pass to allow you more time walking from one class to the next or allowing you to be exempt from or alter the way you wear the school uniform.

Your DEBRA EB Community Support Manager can work with your new school to ensure they understand your needs, how EB impacts you and what small things can be done to help make the most of your school experience.


Assistive technology

Assistive technology enables all individuals, including those with disabilities, to be more independent, self-confident, productive and better included in everyday life, education and employment. Assistive technology can include small items of equipment, such as pencil grips that can make the task of writing easier – many of our members request information about pencil grips for school. Other items include:

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

DEBRA International produces recommended care guidelines for healthcare professionals and people living with EB. The Occupational Therapy clinical practice guideline includes mention of various tools and technologies you may wish to consider to help improve your daily life. Visit the DEBRA International website to download your copy of the Occupational Therapy guideline (there are versions available for healthcare professionals, as well as patients - both children and adults).


Further support

The DEBRA EB Community Support Team works closely with specialist EB nurses and other health and social care professionals to improve the quality of life for people living with EB. The team provides information and support to tackle a wide range of social issues including education – working directly with schools so they better understand the condition, other agencies to provide additional support and families to help with peer support or during times of transition (e.g. changing school).


Useful resources

DEBRA – information about EB (leaflets for schools)

For a full list of education resources, please visit our resources & toolkit page.