Specialist Teaching and Preschool Service
Advice for education settings
Supporting pupils with Ehlers-Danlos syndrome
Ehlers-Danlos syndrome (EDS) is the name for a group of rare, inherited conditions that affect
the supportive connective tissues such as skin, tendons, ligaments, blood vessels, internal
organs and bones. EDS can affect people in different ways. For some the condition is relatively
mild, while for others their symptoms can be disabling. There are several different types of EDS:
EDS - Hypermobile type (EDS-HT) or type lll, is the most common type affecting 1in every
1,000 people with 8 times more likely to be girls than boys. For information about other types,
please see www.ehlers-danlos.org/
Children with EDS-HT may have:
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Joint hypermobility (joints that have an unusually large range of movement)
Loose, unstable joints that dislocate easily
Joint pain and clicking joints
Extreme tiredness (fatigue)
Skin that bruises easily
Digestive problems such as heartburn and constipation
Dizziness and an increased heart rate after standing up
Problems with internal organs, such as mitral valve prolapse or organ prolapse
Problems with bladder control (stress incontinence)
Educational Implications
Tiredness/fatigue
 build in rest breaks
 think about school week and make sure more energetic lessons are spread over the
timetable rather than in one day
 a place for child to lay down (sitting on a school chair is often as hard work as standing)
 think about reducing movement – lift pass, planning lessons in close proximity
 use of wheelchair for school trips
 be aware child may be exhausted but might not show as they don’t want to seem
different to anyone else
Pain – often felt to be invisible by the pupil
 physiotherapy programme to build strength and minimise pain
 use of assistive equipment such as pencil grips/computer to record etc to take pressure
from joints
 listen to child if they say they are hurting
Difficulties dressing or undressing
 use of backward chaining (break task into small steps starting from end result and adult
support with early steps, leaving child to complete later steps independently therefore
achieving success)
 visual prompts
Specialist Teaching and Preschool Service
November 2016
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support from an adult/friend
use of adapted clothes particularly on PE days such as school shirt with Velcro instead of
buttons (some uniform suppliers offer this service free of charge eg Marks and Spencers)
Difficulties carrying heavy/lots of items
 consideration of multiple lockers or locker in a central location
 support from an adult/friend
 coat peg near the door to minimise carrying distance
 coat peg to be easily accessible so child can hang bags easily without having to move
other coats or wait for other people
 multiple textbooks – one at home, one at school
High levels of anxiety
 awareness and sensitivity
 consideration of appropriate counselling/mentoring interventions as available and as
required
 ensure parents are aware of special events in school and forward planning in place to
minimise changes to timetable etc
 communication book between home and school
 appropriate intervention strategies to help child recognise and develop strategies to deal
with anxiety
Difficulties in PE
 differentiated curriculum
 Adult support and reassurance
 Specialist equipment
Difficulty co-ordinating lots of activities
 visual checklists and timetables
 Support with motor planning (ie breaking down the order in which we do a task)
Further Information:
 https://www.ehlers-danlos.org/
 Schools can contact the Specialist Teaching PNI for further support and advice
Specialist Teaching and Preschool Service
November 2016