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Making the Connections: A history of hypermobility research new study out! SEDSConnective webinar

SEDSConnective held an exciting webinar on 20th November 2022, where we heard from Dr Jessica Eccles, Clinical Senior Lecturer and our Patron, along with Dr Lisa Quadt neuroscientist from Brighton and Sussex Medical School.

SEDSConnective participants were able to find out about the team’s growing body of research; 'Making Connections between Hypermobility, related conditions and Neurodivergence'.

For those of us living with symptomatic hypermobility and who are neurodivergent, it’s very encouraging seeing these links beginning to be made in research.

Here’s a brief summary of the points presented during this webinar and in the research:

  • An overview of hypermobility, with a focus on symptomatic hypermobility which is inclusive of all diagnoses of EDS, HSD, JHS and other classifications.

  • Flexible joints affect at least ¼ of the population, but there is no research on how many people are symptomatic hypermobile.

  • Links between hypermobility and dysautonomia – including postural tachycardia syndrome (POTS) – with anxiety and panic symptoms.

  • Research developing a treatment for people living with anxiety and hypermobility (the ADAPT trial). *1

  • Research making links between hypermobility, dysautonomia and neurodivergence (autism, ADHD, dyspraxia, dyscalculia, Tourette’s syndrome).

The headlines from a 2022 paper from the team: *2

  1. Neurodivergent participants were 4 x more likely to be hypermobile.

  2. 70% autistic or 50% ADHD females had generalised joint hypermobility.

  3. Neurodivergent participants had higher rates of orthostatic intolerance and of musculoskeletal pain

  4. The research suggests that the relationship between being neurodivergent and having physical symptoms is explained by the presence of hypermobility

  5. Having hypermobile joints can increase the risk for depression and anxiety in adolescents *4

The initial screening questionnaires for the ADAPT trial found: *1

  1. High levels of undiagnosed but suspected ADHD and autism (particularly in the autism sensory domain) were found in those with hypermobility.

  2. Research has also examined connections between fibromyalgia and ME/CFS *3

  3. 4/5 of fibromyalgia and ME/CFS patients had symptomatic hypermobility.

  4. Hypermobility was linked with a variety of pain and fatigue measures

  • It’s hard to get a MCAS/D diagnosis (Mast Cell Activation system/disorder) as the key parts to be tested tend to disappear too quickly but management and support are key

  • Dr Eccles and Dr Quadt also presented exciting findings from forthcoming, but as yet unpublished research, about which we will share more details in due course.

*1 Davies, G, et al, Trials, 21 September 2021

*2 Csecs, JLL, et al, Front. Psychiatry, 02 February 2022

*3 Eccles J, et al 2021

*4 Eccles JA, Quadt L, McCarthy H, et al, Variant connective tissue (joint hypermobility) and its relevance to depression and anxiety in adolescents: a cohort- based case–control study

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