Ehlers-Danlos Syndrome: A Guide
Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that can make your life a bit of a rollercoaster. If you've ever met someone who can bend in mind-boggling ways or who seems to get bruises and sprains more often than others, they might have EDS. On that note though, it is important to distinguish between general 'flexibility' and actual hypermobility - as well as trained flexibility that you may find in dancers and gymnasts. It is also common to be hypermobile without having a connective tissue disorder.

That said, if an individual has a 'cluster' of symptoms, a connective tissue disorder should certainly be considered. T
his condition primarily affects every individual differently, and can impact the skin, joints, and blood vessel walls, making them more stretchy, fragile, and prone to injury.

Types of Ehlers-Danlos Syndrome

EDS isn't just one-size-fits-all; there are actually more than 15 different types, with new sub-types being found over time. The most common types include:

- Hypermobile EDS (hEDS): This is the most common form, characterised by hypermobile joints and often accompanied by chronic pain and joint dislocations.

- Classical EDS (cEDS): Known for extremely elastic skin and severe bruising.
- Vascular EDS (vEDS): Often considered the most serious type, affecting blood vessels and organs, which can be life-threatening if they rupture.

- Kyphoscoliotic EDS (kEDS):
Involves severe curvature of the spine and muscle weakness.
Each type has its own quirks and challenges, making it crucial to get a proper diagnosis to manage the symptoms effectively.

UK Guidelines for Assessment and Diagnosis

In the UK, diagnosing EDS can be a bit of a detective game. The National Institute for Health and Care Excellence (NICE) has laid out guidelines to help healthcare professionals navigate this complex condition:

Clinical Evaluation: The first step involves a thorough clinical evaluation, including a detailed family history and a physical examination to check for signs like hypermobility and skin elasticity. This involves the Beighton and Brighton criteria scores.

Genetic Testing: For some types, particularly the rarer ones, genetic testing can confirm the diagnosis. This isn't always necessary for hypermobile EDS but is crucial for types like vascular EDS. Families tell us that it can be tricky to be approved genetic testing on the NHS, with the criteria being strict and involving a family history of certain health 'incidents'. People who meet the criteria for EDS without meeting the criteria for NHS genetic testing may be clinically diagnosed with EDS - or, if not fully meeting the EDS criteria, Hypermobility Spectrum Disorder.
Multidisciplinary Approach: Due to the varied symptoms, a team approach is often used, involving geneticists, rheumatologists, dermatologists, and other specialists.

EDS and Neurodivergence

Interestingly, there's an ever-growing body of evidence suggesting a link between EDS and neurodivergence, such as autism and ADHD.  While the exact relationship isn't fully understood yet - although theories suggest a shared group of genes with connective tissue disorders and neurodivergence -  it's clear that the overlap of these conditions can complicate diagnosis and management.

Impact on Education and Mental Health

Young people with EDS face unique challenges in both their education and mental health:

Education: Physical limitations like chronic pain, fatigue, and frequent injuries can lead to absences and difficulty keeping up with schoolwork. Adaptations such as flexible schedules, assistive technology, and extra time for assignments can make a significant difference.
Mental Health: The constant battle with physical symptoms can take a toll on mental health, leading to anxiety, depression, and feelings of isolation. Peer support groups, counseling, and understanding educators can provide much-needed support.
Living with EDS often means navigating a world that's not always accommodating to your needs. However, with the right support and understanding, young people with EDS can thrive in their educational journey and maintain good mental health. Awareness and compassion from those around them can turn challenges into opportunities for resilience and growth.

Want to learn more about Ehlers-Danlos Syndrome? Why not take part in our Sunshine Academy course on EDS here.
Empty space, drag to resize