Toolkit: Ehlers-Danlos and joint hypermobility syndrome

Written by: Pete Henshaw | Published:

A toolkit is being offered for schools to help them support pupils living with Ehlers-Danlos syndromes (EDS) and joint hypermobility syndrome (JHS).

These little-known conditions are thought to affect at least one in five children and young people and the resource is aimed at improving early diagnosis.

The free toolkit is funded by the D’Oyly Carte Charitable Trust, the Peter Harrison Foundation and the Ehlers-Danlos Support UK and has been created in collaboration with the Hypermobility Syndromes Association.

Children living with these conditions may have poor attendance due to outpatient appointments or high symptom levels, while some families resort to home education.

These syndromes are often misunderstood and may be more prevalent as they are easily missed or misdiagnosed. It is common for children to remain undiagnosed until later in life.

Typical symptoms can include dislocations, sprains without a clear cause, pain, tiredness, clumsiness, dizziness and anxiety. There may also be links between hypermobility and neurodevelopmental disorders such as hyperactivity, inattention, dyspraxia and autistic spectrum disorder, but this is not yet fully understood.

EDS are complex heritable multi-systemic connective tissues disorders. People with these conditions have connective tissues that are defective, but each person can present differently, from being asymptomatic to severely affected.

While there are 13 types of Ehlers-Danlos syndromes, hypermobile EDS (hEDS) is the most common. Hypermobility is seen in most types of EDS and is also a key feature of the related JHS. Both EDS and JHS are complex disorders which can be difficult to diagnose, and can often present with co-occurring conditions and symptoms.

Jane Green, an advisor on hypermobility syndromes and the EDS UK content lead for the toolkit, explained: “Schools have commonly not understood EDS and JHS in children and young people. Often children and young people are not believed to be ill, in pain or injured as it seems to come out of nowhere.

“Sometimes parents or carers are questioned regarding how it happened but have no answer. As an ex-assistant headteacher and long-term hEDS sufferer, I know how real these symptoms are and how frustrating the lack of understanding of the condition/s can be for all involved. Recognition of the syndromes can make all the difference to quality of life and often these symptoms are first spotted in the classroom.”


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