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.

Contents:

• A new beginning
• Choosing a secondary school
• Assistive technology
• Further support
• Useful resources

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.

 

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)

• EB Simplex (EBS)
• Kindler EB (KEB)
• Mild dystrophic EB (DEB)
• Recessive Dystrophic EB (RDEB)
• What is EB? infographic

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