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What are Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders

Learn about Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) and how they affect pupils at school

What are Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorders (HSD)
Hypermobility

Pupils with most types of EDS may be able to extend their joints further than is usual – this is known as being hypermobile or double-jointed. Hypermobility is quite common in the general population, especially in children and, on its own, is not necessarily a problem. However, symptomatic hypermobility can be associated with long-term, widespread pain, frequent dislocations, damage to the tissues surrounding joints and fatigue. People who are hypermobile may also struggle to sense the position of their joints (this is called having poor proprioception). This can make them appear clumsy and can lead to falls and other injuries.

The Ehlers-Danlos syndromes (EDS)

EDS are a group of genetic (heritable) conditions affecting the connective tissue which is found throughout the body. It is a multi-sytemic connective tissue disorder. Connective tissue holds joints and internal organs in place and is an important structural component of skin, blood vessels and other tissues.   In EDS, a certain kind of connective tissue (usually collagen) is fragile and stretchy. This can cause symptoms throughout the body. The different types of EDS are quite distinct from each other. While some have very specific signs and symptoms, there are some that are common to most types of EDS. Vascular EDS (vEDS) is different to the other types of EDS and can lead to sudden, life-threatening events.

Hypermobility spectrum disorders (HSD), closely related to EDS

HSD are a group of conditions related to joint hypermobility closely related to EDS. HSD are intended to be diagnosed after other possible answers are excluded, such as any of the Ehlers-Danlos syndromes (EDS). It is more common for children to be labelled as symptomatic hypermobile or with HSD. People with HSD display similar symptoms to people with EDS. The differences between the two are not important from a school’s perspective and we suggest pupils with HSD or EDS be treated and managed in the same way except for individual difference.

EDS and HSD are complex syndromes affecting many systems of the body at once. Despite this, they are often invisible disabilities. In addition to problems associated with hypermobility, sufferers may also have skin which damages easily, bruises and is slow to heal, or alternatively can be thick and velvety. Other symptoms are dizziness, palpitations, digestive disorders, bladder problems and anxiety. Such problems and their severity vary considerably from person to person and are unique, even in the same type of EDS and within the same family. Other conditions seem to be more common in people with EDS and HSD compared to the general population but we can’t say for certain that they are linked. There is some evidence of a relative risk of autism given EDS but further research is needed.  There is also an association with allergies, such as mast cell activation disorder (MCAS) which produces a range of allergy-like symptoms some of which can be severe.

LIST of most common symptoms EDS and HSD laid out

Pain/ dislocations/sprains

Extreme tiredness

Anxiety

Bowel or bladder issues- cystitis

Gastrointestinal issues-swallowing issues, reflux, stomach spasms

Dizziness

Sensory Processing Disorders – proprioception, vestibular and interoception

Autism/Neurodiversity

Allergies

Headaches

Restful sleep

New paragraph on gender hormones and issues diagnosing it .

 

How do EDS and HSD affect pupils at school

Symptoms can vary widely between pupils with symptomatic hypermobility (EDS, HSD) even those from within the same family. Similarly, the same pupil may experience huge variation in how their condition affects them day by day and over their time at school.

Children and young people with symptomatic hypermobility (EDS, HSD)  may present as being distracted, fidgety and uncooperative in class; this is not necessarily something they are doing to be disruptive. It could be caused by a number of factors including fatigue, pain, difficulty sitting still, and difficulty handwriting.

Fatigue caused by the conditions may manifest as slowness which gradually gets worse throughout the day or bouts of extreme tiredness causing the pupil to fall asleep. Pupils who are in pain may experience this as a general persistent pain or as muscle spasms or sensory pain.  It may appear the pupil is able to attain set targets at times but at other times the pupil may appear ‘brain fogged’ or ‘lazy’.  They are not lazy but having to adjust to inflammation in the body which increases fatigue.  Sometimes the due to poor blood flow in a condition called ‘PoTs’ the blood pools in the lower extremities and less to the brain and therefore less oxygen.

They may not be able to keep up with their peers in the playground, may be less able to participate in social activities outside of school and may experience anxiety and/or depression making maintaining friendships challenging. They may need extra emotional support.

Particularly severe symptoms may affect a pupils attendance, as will the frequent medical appointments which often come with having the conditions. Most pupils with EDS and HSD want to work and fully participate in school life but find it too challenging physically in the school environment.

Our reasonable adjustments page suggests some strategies, policies and products which can help pupils with EDS or HSD to better engage with and stay in school.

 

Video: A pupils perspective

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