Ehlers-Danlos Syndromes (EDS) are a group of hereditary connective tissue disorders (HCTD) that affect all systems of the body. 

The most common type of EDS is hypermobile EDS, which is characterised by increased mobility in the joints as per the Beighton score, systemic features including skin problems and widespread pain. 

The prevalence of different types of EDS varies. 

Hypermobile EDS affects one in 3100–5000 people, while the rarer types can affect as few as one in a million (The Ehlers-Danlos Society n.d.). 

While these conditions are considered rare, there seems to be a higher prevalence among the LGBTQIA+ community, though the reason remains unclear. 

One study investigating adolescents with EDS found that 17 per cent experienced gender dysphoria (Jones et al 2022). 

Recently, researchers at a gender affirming primary health clinic estimated that the prevalence of EDS among transgender patients could be up to 2.7 per cent, much higher than the 0.02 per cent prevalence in the general population (Stein et al 2025). 

Why does this matter? 

Acknowledging the prevalence of EDS within the LGBTQIA+ community is important both for providing affirming care and for recognising potential connective tissue disorders. 

Understanding and identifying these HCTDs is essential for improving quality of life. 

Healthcare practitioners are often unfamiliar with HCTDs and are perplexed by their presentations, leading to delayed diagnosis (the average time to diagnosis is 10 years) and misdiagnosis (Halverson et al 2023). 

Clinicians also often dismiss patients’ symptoms, misattribute them to incorrect diagnoses (eg, fibromyalgia or functional neurological disorder) or don’t believe the patient, contributing to poor mental health. 

The medical gaslighting of patients is essential to bear in mind when considering diagnostic pathways for LGBTQIA+ individuals, especially for those who are transgender or gender diverse.

The power differential in the patient–practitioner interaction is exacerbated by the marginalised identities of the LGBTQIA+ community. 

Additionally, LGBTQIA+ patients are nearly twice as likely to experience medical gaslighting and trauma as their cisgender and heterosexual peers. 

The common experiences of LGBTQIA+ individuals and those with EDS amplify the effects of medical gaslighting and delayed diagnosis. 

As such, it is unsurprising that LGBTQIA+ individuals have significant distrust in the healthcare system. 

What features suggest a connective tissue disorder? 

The most common types of HCTDs are hypermobile EDS and hypermobility spectrum disorders. 

Hypermobility is not simply being flexible. 

It often includes significant joint instability, causing pain and dysfunction. 

Some hypermobile people will experience regular dislocations or subluxations, which often occur in the shoulder or patella but can be in other locations such as the fingers or feet. 

They may have other systemic features including skin differences, hernias, arachnodactyly and cardiac abnormalities. 

There are a number of comorbid conditions with connective tissue disorders. 

Postural orthostatic tachycardia syndrome is a form of dysautonomia resulting in tachycardia, fatigue, brain fog or syncope. 

Another comorbidity is mast cell activation syndrome, a condition in which there is a dysfunction of the mast cells where they become overactive, leading to symptoms such as gastrointestinal issues, unexplained rashes, eczema and joint pain. 

What is the role of physiotherapy? 

Muscle pain and joint instability are core components of hypermobility and exercise is an excellent way of improving both. 

However, rehabilitation tends to take longer in this population; people with HCTDs are often deconditioned and have lived with significant amounts of pain and subsequently may be weaker to begin with (To & Alexander 2019). 

In addition to strength issues, individuals with hypermobility often have significant difficulty with proprioception. 

This is likely due to the altered mechanics of faulty connective tissue (Scheper et al 2016). 

Given the challenges with proprioception, it is essential to train muscle control alongside muscle strength, particularly for joints that are repeatedly dislocating and subluxing. 

These patients also benefit from manual therapy because although their joints are hypermobile, their muscles often become overactive as they try to support the joints. 

When designing treatment for people with EDS, it is important to consider the preferences of the individuals. 

Some members of the LGBTQIA+ community may not like touch or may not feel safe in conventional gym environments. 

Overall, the relationship between connective tissue disorders and whether or not someone is part of the LGBTQIA+ community is not fully elucidated. 

However, we do know that there is considerable overlap. 

Given that these two groups are both susceptible to medical gaslighting, it is important to be compassionate, respectful and thorough in your practice in order to ensure that all patients feel safe and heard at all times. 

>> Holly Shuttleworth APAM (they/them) is a non-binary physiotherapist who works primarily with individuals with connective tissue disorders such as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder. 

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