School toolkit launched to support pupils with EDS or hypermobility-related problems

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Today, EDS UK and the Hypermobility Syndromes Association (HMSA) launch an online toolkit for schools to support pupils with EDS and hypermobility-related disorders.

The free resource aims to provide school staff with information about symptomatic hypermobility and the Ehlers-Danlos syndromes (EDS) and how they may affect primary and secondary pupils at school. It emphasises that the conditions affect children and young people in different ways and often, simple, low-cost adjustments can make a big difference.

The different terms used to describe the most common hypermobility-related conditions are explained alongside common symptoms. In the UK, it is more likely for children and young people to be diagnosed with joint hypermobility syndrome (JHS) than hypermobile EDS (hEDS) or hypermobility spectrum disorders (HSD).

The toolkit offers schools advice on a range of adjustments they can consider to help with everything from moving around school to uniform and using the toilet. It covers how JHS and EDS can affect how pupils sit, how they write and what they can do in terms of physical activity.

A resources section provides a handy printable card containing key information about the conditions and helpful adjustments, templates for pupil profiles and prompt cards and a range of links to related articles, videos and websites.

Jane Green MA Ed, a professional educationalist and content lead for the toolkit, says:

The School Toolkit for EDS and JHS is long awaited and overdue. Schools have commonly not understood EDS and JHS in children and young people. Often children and young people are not believed to be ill or 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.”

EDS UK would like to thank volunteer Jane Green for leading on the content of the toolkit and for her invaluable input to its design. We would also like to thank teachers Kerstin Holm and Georgia Earl and Katharine (Kay) White, physical wellbeing and rehabilitation practitioner, for their input. We are very grateful to The D’Oyly Carte Charitable Trust and The Peter Harrison Foundation for funding.

Visit theschooltoolkit.org to find out more.

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