VIEWS & OPINION Why the education sector needs to know more about

hypermobility syndromes in children Comment by JANE GREEN, MA Ed

Ehlers-Danlos syndromes are not widely known by many and it’s in schools where there is an urgent need for understanding. This could make a tangible difference in the way that affected children are educated and go on to thrive as adults. People with these conditions

have connective tissues that are defective, but each person can present differently, from being asymptomatic to severely disabled. The most common type of EDS is hypermobility EDS (hEDS) diagnosed by clinical examination and history. It is also a complex disorder, and it can be difficult to get a diagnosis when you have co-occurring conditions and symptoms. Joint hypermobility syndrome (JHS) or symptomatic hypermobility which is closely related to EDS is often managed in the same way. This is still quite a new area for research and the criteria is still under debate and will possibly evolve further in future years.

migraines, viral illnesses, and stomach issues like bloating and spasms when I was growing up. At secondary school, I failed entrance exams and I was placed in the bottom sets. I did not reach attainment levels or often attend school as I was either unwell or unmotivated, so I left early with a couple of qualifications. It is crucial that we are believed and that we get supported both physically, emotionally and mentally. For these reasons, I have helped to create and lead the content for the

‘School Toolkit for EDS and JHS’, which has been funded by Ehlers-Danlos Support UK, with support from the Hypermobility Syndromes Association. The online free resource is long overdue. It is aimed at schools UK wide and includes information about how education staff can identify some of the most common ways symptomatic hypermobility can impact pupils’ functional and academic participation. It links to how reasonable adjustments can be made and how understanding hypermobility can affect a person’s life physically, emotionally, socially and mentally. Although EDS and JHS can exist without secondary conditions and co-

occurrences, it is interesting that research (Jelsma, Lemke D, 2013) is evidencing the need to study the links between hypermobility and dyspraxia. Other data shows co-occurrences with fibromyalgia, CFS/ME, anxiety, allergies, and pain including linking the brain and body. New preliminary data (Savage, Eccles 2021) suggests early results add to evidence linking connective tissue to neurodevelopmental conditions (including Autism) and interestingly, specifically to sensory processing differences. There also seems to be some similar symptoms with allergy overreactions, CFS/ME and even Long Covid. This school toolkit incorporates this early research by providing information about co- occurrences and how to manage them. We know this school toolkit has been much needed by education staff

There are many common symptoms, including, dislocations, sprains

without previous trauma, pain, tiredness, dizziness, stomach issues, bowel and bladder problems, temperature issues, anxiety, clumsiness and allergies. Laxity of core muscles and ligaments often means it is challenging to hold a pen. It is uncommon for many children to actually get a diagnosis at this age so are often left to just try and manage, as are their parents. Commonly, pupils fail to thrive in getting an education and career.

Sometimes, because their symptoms are disbelieved, especially as they can appear ‘out of the blue’, the effects of trauma can build up from a young age. Parents/carers can also feel that they are being over fussy, or blamed for being ‘bad’ parents. The incidence of pupils not being believed and not being able to attend school with these symptoms and conditions is growing and sometimes parents/carers are even accused of intentionally harming their children, labelled “Fabricated Induced Illness”. I saw this often as an Assistant Headteacher/ Lead for Autism

Education. My thoughts were how these issues are not being covered by the current training or not being understood for pupils - with or without registered SEND - that organisations and schools had at their disposal. There seemed to be a lot of home educated pupils who were autistic, neurodivergent, anxious, dyspraxic or had ‘health’ problems (which are likely to be related to hypermobility). I knew more understanding was needed as it seemed to be a recurring pattern in different schools and followed these themes. As a long-term hEDS sufferer, I often experienced pains, including

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for some time. We are also aware that many parents/carers have been desperate to have information and simple key resources available to schools. It is not only important, but essential that pupils with EDS and JHS are supported by some knowledge, understanding and belief of what is a complex disorder, with possible associations to other areas mentioned above. In the future, if neurodivergent pupils seem to have physical illnesses or the injuries mentioned, it might be worth investigating screening for hypermobility at the time of their assessment. The intention is that this toolkit will help pupils attend more lessons, whether with continued blended learning, but all with the aim of better attainment, attendance and outcomes.

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