For Jane Green, school was a challenge. She went to six different schools and was frequently in the bottom set. She was a tall, thin girl who missed a lot of lessons. She was always tired, had problems with bowels, bladder and allergies; suffered from bloating and migraines, dislocations and low grade infections.
In 2015, at the age of 53, she finally got a diagnosis: Ehlers-Danlos Syndrome (EDS). It is one thing to get a label but quite another to access suitable, informed support. Symptoms can be wide-ranging while sprains and dislocations and clumsiness may lead to a diagnosis of dyspraxia. The cause is unknown.
There are 13 named types of EDS, the most common is hypermobility EDS (hEDS) and the closely related Hypermobility Spectrum Disorders (HSD) for adults, or Joint Hypermobility syndromes (JHS) for children. Symptomatic Hypermobility (SH) is also used as EDS is rarely diagnosed. It is heritable and can affect children and young people throughout the body/head areas with different symptoms. It cannot be cured but can be managed.
In fact, EDS is difficult to identify. This is a problem because it is thought to affect one child in every 500 and Joint Hypermobility Syndrome (JHS) is even more common, so teachers are likely to come across a child at some stage in their career but without knowing it. These days publications often use the term symptomatic hypermobility.
Mistaken for abuse?
Lydia was especially supple and loved gym, sports and dance. She could extend her limbs further than the average child and this made her look exceptionally graceful and athletic. She dislocated her shoulder for the first time at the age of nine and the school had no idea how this had happened. Nor had she. She started to show bruises on her arms and shins and the school was concerned that she was experiencing domestic violence at home.