Understanding hypermobility

Hypermobility can have a profound impact on children, but a new School Toolkit aims to raise awareness among educators so they can deliver the right support. Absolutely Education finds out more

Hypermobility is a term many are familiar with – the common phrase for the most obvious manifestation used to be ‘double jointed’. Many children are very supple and can appear hypermobile, but that flexible or ‘bendy’ body that is a distinct advantage for aspiring ballet dancers and athletes may sometimes be a marker of hypermobility syndromes – a group of conditions that can affect connective tissues throughout the body.

It’s important to note that hypermobility is relatively common (often estimated at around one in ten of the population) and is not of itself a cause for concern. Where it is associated with repeated pain, fatigue, anxiety, injuries and other ongoing or intermittent health issues, this may indicate Joint Hypermobility syndrome (JHS) or Ehlers-Danlos syndromes, including hypermobile EDS (hEDS). These are still considered rare conditions (see About Hypermobility Syndromes, below) but some researchers suspect they may be under-recognised and under-reported. This is where a new School Toolkit comes in.

Understanding hypermobility — The most visible sign of hypermobility is flexible joints – but all connective tissues of the body may be affected

Jane Green, an educationalist and adviser on Autism and Hypermobility Syndromes, is lead on the School Toolkit – she also has hEDS herself. Educators are the primary target because they are on the ‘front line’ with young people day to day, making them well-placed to spot potential issues and also to provide support. Funders of the toolkit for schools include The D’Oyly Carte Charitable Trust, The Peter Harrison Foundation and The Ehlers-Danlos Support UK, and it has been developed in collaboration with the Hypermobility Syndromes Association.

Flexibility of joints – including the ability to bend thumbs right back to the elbow or touch the ground with palms flat and knees straight – is the visible external sign of hypermobility (both are among the tests used in assessment), but these hypermobility conditions can affect some or all connective tissues inside and outside the body. “People with these conditions have connective tissues that are defective, but each person can present differently, from being asymptomatic to severely disabled,” says Jane Green.

About Hypermobility syndromes: Ehlers-Danlos syndromes are a group of heritable disorders of connective tissues of which hEDS is by far the most common. Prevalence of hEDS has been estimated at 1 in 5,000, however some research believes it remains under-reported. There is no specific genetic test for hEDS, so diagnosis is via medical examination. Joint Hypermobility syndrome is a term used to cover a range of symptomatic hypermobility conditions. These include hEDS, and also cEDS, Stickler and Marfan syndromes.

One of the key issues for young people with a potential diagnosis of hEDS or JHS is the sheer diversity of possible symptoms, but, says Green, there are some markers that could warrant further investigation. “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.” For younger children, there can be specific challenges visible in early years. “Laxity of core muscles and ligaments often means that it is challenging to hold a pen,” says Green. “It is uncommon for many children to actually get a diagnosis at this age, so they are often left to just try and manage, as are their parents.”

Of course, nearly all young children have very ‘bendy’ bodies and all develop skills at their own pace. But useful things to know are that there is a higher recorded incidence of hypermobility syndromes among girls (often presenting most strongly from early adolescence) and that hypermobility syndromes are often heritable. Heritability means, says Green, that parents do not always see their child’s issues as unusual; perhaps they experienced similar ‘growing pains’ themselves. She has given talks where suddenly the penny has dropped for a parent who recalls experiencing pain, fatigue or other mysterious symptoms they are now investigating in their own child.

She has a profound insight into the impacts on children who don’t get a timely diagnosis, having only received her own formal diagnosis of hEDS at the age of 53. “As a long-term hEDS sufferer, I often experienced pains, including migraines, viral illnesses, and stomach issues like bloating and spasms when I was growing up,” she says. “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.”

While she went on to have a successful career as a teacher and educationalist, Green says hypermobility syndromes – and particularly the absence of a diagnosis – negatively impacts lives. A key issue can be the struggle to be believed. “Sometimes, because symptoms are disbelieved, especially as they can appear ‘out of the blue’, the effects of trauma can build up from a young age.” She also says this can damage the whole family, since parents / carers may be accused of being over-fussy or neglectful – even of intentionally harming their child.

Green suspects there are children who slip through the net completely and drop out of mainstream education. “I saw this as an Assistant Headteacher/ Lead for Autism Education,” she says. “There seemed to be a lot of home-educated pupils who were autistic, neurodivergent, anxious, dyspraxic or had unspecified ‘health problems’.” She suspects there’s a pattern of symptoms at play across our schools that are being missed because educators have not been made aware of the markers and clues that could indicate hypermobility syndromes.

Shutterstock Copy — The School Toolkit aims to increase understanding of symptomatic hypermobility and ways to support young people

This is where the School Toolkit hopes to effect change, improving school outcomes and children’s wellbeing. Green says it’s 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.”

She believes that increasing awareness among educators and SEND specialists, alongside a growing body of research – although more is needed – may also help. In particular, Green hopes we may start to gather more information on potential links or co-occurrences between symptomatic hypermobility and other conditions – from fibromyalgia to CFS/ME to sensory processing differences.

“It is not only important, but essential that pupils are supported by some knowledge, understanding and belief,” says Jane Green. Effective management may mean, for instance, that children discover earlier which sports are beneficial and which may not be a good fit with hEDS or JHS. It also means they and their teachers can find workarounds for some of the symptoms that inhibit their attendance or enjoyment of school or stop them from studying and participating at the same pace as everyone else. “Given the right support and management, children with hypermobility syndromes can go on to excel at school,” she adds.