The lived experience of hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders in the United Kingdom:... 2026 Berg and Dockrell

[Andy]

Full title: The lived experience of hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders in the United Kingdom: findings from a national cross-sectional survey

Abstract
Purpose

This study explored the lived experiences of individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) in the United Kingdom, focusing on diagnosis, access to care, and impact on daily life.

Materials and Methods

A cross-sectional, mixed-methods online survey was co-developed with patients and clinicians and disseminated via Ehlers-Danlos Support UK social media between September 2023 and January 2024.

Results

A total of 2002 valid responses were received. Respondents were predominantly female (90.9%). The mean diagnostic delay was 19.0–21.7 years. Regional differences and heavy reliance on private healthcare were noted. Common symptoms included chronic pain (83.9%), joint subluxations (73.8%), and gastrointestinal manifestations (66.3%), and we observed high rates of neurodivergence. High rates of unemployment (45.6%), disrupted education (55.9%), and benefit dependence (47.9%) were also reported.

Conclusions

Our findings highlight the urgent need for equitable, multidisciplinary care pathways co-designed with patients to reduce diagnostic delay, improve care coordination, and address the wide-ranging impacts of hEDS/HSD.


Implications for rehabilitation

• Individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) commonly experience chronic pain, fatigue, and multisystem symptoms that significantly impair daily functioning and quality of life.
• Access to coordinated, multidisciplinary management (including physiotherapy, occupational therapy, and psychological support) is currently limited and often fragmented.
• Supported self-management resources should be neurodivergence-informed and co-designed with patients to address both physical and psychosocial challenges in an accessible manner.

Open access

 

[Andy]

"The most common co-occurring conditions diagnosed within the study population were anxiety (70.8%), depression (63.3%), migraine (53.5%), dysautonomia/postural orthostatic tachycardia syndrome (45.2%), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (30.5%), and Raynaud’s phenomenon (30.2%)."

"Participant reports of misdiagnoses such as ME/CFS, fibromyalgia and functional neurological disorder reflect existing concerns about diagnostic overshadowing in this patient population, and likely contribute to the lengthy “diagnostic odyssey” observed in people living with hEDS/HSD [Citation3,Citation31]. "

 

[Jonathan Edwards]

There is a problem if 90% of cases are female since EDS is by definition autosomal dominant with equal sex incidence or sex linked recessive with a major male predominance.

Women are more (joint) mobile than men so this seems likely to be a population of relatively mobile women who have sought a diagnosis for a range of symptoms. The preponderance of clinical features could easily be just a reflection of private referral pathways.

 

[Tilly]

Full title: The lived experience of hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders in the United Kingdom: findings from a national cross-sectional survey

Abstract
Purpose

This study explored the lived experiences of individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) in the United Kingdom, focusing on diagnosis, access to care, and impact on daily life.

Materials and Methods

A cross-sectional, mixed-methods online survey was co-developed with patients and clinicians and disseminated via Ehlers-Danlos Support UK social media between September 2023 and January 2024.

Results

A total of 2002 valid responses were received. Respondents were predominantly female (90.9%). The mean diagnostic delay was 19.0–21.7 years. Regional differences and heavy reliance on private healthcare were noted. Common symptoms included chronic pain (83.9%), joint subluxations (73.8%), and gastrointestinal manifestations (66.3%), and we observed high rates of neurodivergence. High rates of unemployment (45.6%), disrupted education (55.9%), and benefit dependence (47.9%) were also reported.

Conclusions

Our findings highlight the urgent need for equitable, multidisciplinary care pathways co-designed with patients to reduce diagnostic delay, improve care coordination, and address the wide-ranging impacts of hEDS/HSD.


Implications for rehabilitation

• Individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) commonly experience chronic pain, fatigue, and multisystem symptoms that significantly impair daily functioning and quality of life.
• Access to coordinated, multidisciplinary management (including physiotherapy, occupational therapy, and psychological support) is currently limited and often fragmented.
• Supported self-management resources should be neurodivergence-informed and co-designed with patients to address both physical and psychosocial challenges in an accessible manner.

Open access

The issue is more complex than this and as medicine has never really taken the importance of being a woman seriously, it is not surprising all the waffle about women's health gets confused, let alone the decades of ignorance over the complexities of ME. Women have both to contend with.

The wondering womb, lax joints because of child birth, more emotionally unstable, ETC ETC show us women few know what they are talking about. Talk about bias, silly opinions and only looking at the outside surface and not the complete onion. How is our collagen impacted through the ages, with mast cell and all the hormonal changes. The suffering and long term impacts on health is there for all to see, if only we would look.

this jumps to my mind when I read this

Polyendocrine Metabolic Ovarian Syndrome: New name to improve diagnosis and care of condition affecting 170 million women worldwide

Polyendocrine Metabolic Ovarian Syndrome (PMOS) is the new name for the condition previously known as Polycystic Ovary Syndrome (PCOS), which impacts 1 in 8, or more than 170 million women worldwide.

www.endocrine.org

 

[Jonathan Edwards]

How is our collagen impacted through the ages, with mast cell and all the hormonal changes. The suffering and long term impacts on health is there for all to see, if only we would look.

Collagen itself is the same for men and women. Women are more mobile because of having two X chromosomes - either via hormonal effects or direct effects from sex chromosome genes. Nothing to do with mast cells as far as anyone knows. Whether or not mobile joints lead to suffering is very uncertain. The studies of schoolchildren I have seen suggest not much. Being more mobile has advantages and disadvantages for doing things. Women may well have more pain than men but there is no good evidence for it having much to do with hypermobility and certainly not EDS.

The EDS syndromes are not diseases of women, by definition. They are autosomal dominant or possibly sex-linked recessive (only in men). This is a basic medical fact, rather than myth put about by some of my colleagues. They have produced all the confusing waffle.

 

[Tilly]

Collagen itself is the same for men and women. Women are more mobile because of having two X chromosomes - either via hormonal effects or direct effects from sex chromosome genes. Nothing to do with mast cells as far as anyone knows. Whether or not mobile joints lead to suffering is very uncertain. The studies of schoolchildren I have seen suggest not much. Being more mobile has advantages and disadvantages for doing things. Women may well have more pain than men but there is no good evidence for it having much to do with hypermobility and certainly not EDS.

The EDS syndromes are not diseases of women, by definition. They are autosomal dominant or possibly sex-linked recessive (only in men). This is a basic medical fact, rather than myth put about by some of my colleagues. They have produced all the confusing waffle.

I don't think we have looked at the connections each of these have and until we do, we need to keep an open mind to the possibilities, some waffle gives us clues, but cutting out the noise from the truth is difficult.

Remember what we once thought of as undeniable, we found out was because we did not have all the facts. The lived experence has been hidden for centuries and yet some of what was once termed waffle of those women, have been found to be actual science. If only we had listened to them.

Is the collagen the same in every person, let alone different sexes? what influences change? Not all humans are made the same, now that is an undeniable fact. What damages our structure, not just collagen but our bones, bone marrow as the infection or injury, travels through our systems kicking off autoimmune defences and regenerative systems. Questions worth asking and digging deeper for?

People especially women rarely have just one thing going on in their body at any one time and that is what needs to be understood here. How many women have mast cell and UTI along with ME. Thank is the silenced lived experence along with hormonal changes and autoimmune. Until we collect the data organise the numbers and look at the evidence then we cannot begin to understand.

 

[Jonathan Edwards]

I don't think we have looked at the connections each of these have

Yes, we have, and the results are straightforward. This is all known fact, at least in broad terms. As a professor of connective tissue medicine who ran the first hypermobility clinic in London in 1979 I know about this. I can assure you there is nothing to it of significance. Can you give me any evidence for a connection? We have been through dozens of papers and all poor quality.

I don't really understand why people believe this stuff. It fuels exactly the sort of prejudice you refer to.