A school toolkit for Ehlers-Danlos syndromes (EDS) and joint hypermobility syndrome (JHS) has been launched, aiming to improve the understanding, attainment and attendance of pupils with these little-known conditions in schools across the UK. The free online resource, funded by The D’Oyly Carte Charitable Trust, The Peter Harrison Foundation and The Ehlers-Danlos Support UK, has been developed in collaboration with the Hypermobility Syndromes Association to plug the urgent need for education of staff in mainstream primary and secondary schools to give children a better chance of living normal lives.
Affected children may have poor attendance due to outpatient appointments or high symptom levels, while some families even resort to home education. The purpose of the toolkit is to improve the provision of appropriate early intervention for students with EDS and JHS.
EDS is thought to affect at least 1 in every 5,000, and JHS is more common. These syndromes are often misunderstood and may be more prevalent as they’re easily missed or misdiagnosed. It is common for children to remain undiagnosed until later in life, although we know that early diagnosis can reduce long term disability.
Typical symptoms in children 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.
Jane Green MA Ed, a professional educationalist and adviser on hypermobility syndromes and the EDS UK content lead for the School 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, 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 hypermobile Ehlers-Danos syndrome (hEDS) sufferer, I know how real these symptoms are and how frustrating the lack of understanding of the conditions 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.”
How the toolkit helps
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, hEDS is the most common type. 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.
The school toolkit is aimed at schools UK wide and includes an overview of what EDS and JHS are, a diagram of common symptoms, and some of the most common ways hypermobility and other symptoms of EDS and JHS can impact pupils functional and academic participation. It also includes advice on reasonable adjustments that can support children with EDS or JHS, such as addressing issues with moving around, reading, writing and studying, physical education, toileting, wearing school uniform, school trips and exams. The EDS and JHS school toolkit is available at 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.”
For further information :
About The Ehlers-Danlos Support UK
Established in 1987, The Ehlers-Danlos Support UK is the UK’s largest charity for people affected by any type of Ehlers-Danlos syndrome or hypermobility spectrum disorder. Its vision is to reduce the time to diagnosis from 10 years to 10 months.
The Ehlers-Danlos Support UK provides information and support through physical and virtual support groups, a helpline, website and events. It educates medical professionals to recognise the conditions and promotes and funds research to advance knowledge about them.
About the Hypermobility Syndromes Association
The HMSA is the only UK charity supporting all people with symptomatic hypermobility – whatever the cause, and whether or not they are diagnosed.
With a holistic, solution-focused approach to living well with a hypermobility syndrome, the HMSA’s expert patients, volunteers, and medical advisory board provide management-focused patient support groups, and educational programs, information, and advice to hypermobile people and their wider support network, including health and social care professionals.