The School Toolkit for EDS & JHS has launched this morning, aimed at improving awareness and understanding among teachers in mainstream primary and secondary schools of the impact hypermobility syndromes can have on a child's attainment and attendance. Hoping to improve both academic and health outcomes by ensuring that students with these surprisingly common but little known and often misunderstood conditions are able to access appropriate support from the teachers best placed to help them manage their condition in the school environment.

The free online resource, has been funded by The D’Oyly Carte Charitable Trust, The Peter Harrison Foundation and The Ehlers-Danlos Support UK, and developed in collaboration with The Hypermobility Syndromes Association. Aimed at schools UK wide, it includes an overview of what EDS and JHS are, a diagram of common symptoms describing some of the most typical ways hypermobility and other less obvious symptoms of EDS and JHS can impact pupils’ functional and academic participation. It includes advice on simple adjustments that can be made to improve the student experience, such as the importance of regular break times and moving around, reading, writing and studying, physical education, toileting issues, wearing a school uniform, school trips and exam times. The EDS and JHS school toolkit is available a http://theschooltoolkit.org/

Assistant Headteacher Dawn Denyer MA NPQSL of St Wilfrid’s Catholic School, Crawley, Sussex says: “As a headteacher and parent of a teenager with hypermobility and associated comorbid conditions I am extremely aware of the impact that it has on the daily lives of children in education. This is an invisible condition which seriously impacts the day to day lives of those affected. The variation in the severity of symptoms makes it so much harder to deal with in an education setting. This toolkit will enable education staff to better support children and allow them to fulfil their potential.' 

Michelle Read from Brighton, whose child has hypermobility issues, says:

“Having a school hypermobility toolkit would have been so beneficial during my daughter's school years. Many of the staff had no understanding of the condition, or how to support her. I was forever being called to the school to deal with issues myself, even when her symptoms were very minor. This was because they all had fear of the unknown and the potential consequences of things going wrong. The benefits of a toolkit would have certainly helped educate the staff, and give them the security of knowing there is somewhere to turn to for advice. It would also have alleviated the concerns I had as a parent, that the staff were equipped to deal with issues adequately.”

Jane Green MA Ed, 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, 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.”