Resources

We’ve collated useful documents, videos, support and more for anyone interested in, working with, or suffering from hEDS or HSD.

  • Publications
    Publications

    Publication comparing quality of life measures for headache (and migraine)

    Measuring health-related quality of life in chronic headache: A comparative evaluation of the Chronic Headache Quality of Life Questionnaire and Headache Impact Test (HIT-6)
  • Publications
    Publications

    Core Outcome Set for Migraine

    Core outcome set for preventive intervention trials in chronic and episodic migraine (COSMIG): an international, consensus-derived and multistakeholder initiative

  • Publications
    Publications

    International survey and co-created solutions for childbearing with hEDS/HSD

    Two online mixed-methods international surveys were completed by 955 childbearing people with hEDS/HSD and 307 maternity staff. This was followed by the co-creation of three tools with 17 co-creators and a design team.

  • Publications
    Publications

    A Large International Survey of Outcomes and Complications for Childbearing with hEDS/HSD

    This is a publication for a study that aimed to examine outcomes and complications in people childbearing with hEDS/HSD. A large online international survey was completed by 947 women with experience in childbearing and a diagnosis of hEDS/HSD.

  • Publications
    Publications

    Review examining interventions for hEDS/HSD and shoulder symptoms

    The effectiveness of conservative interventions on pain, function, and quality of life in adults with hypermobile Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders and shoulder symptoms: A systematic review
  • Publications
    Publications

    Co-creation of PoTS physical activity intervention

    This paper describes the process of co-creating a physical activity intervention for POTS and how to test its feasibility. People living with PoTS have been fully involved throughout the whole process to ensure that this research is meaningful and useful. This research is funded by British Heart Foundation.

  • Publications
    Publications

    Systematic review protocol on hEDS/HSD shoulder interventions

    This is a protocol for a systematic review examining non-pharmaological interventions to improve pain, function and quality of life for adults with hEDS/HSD and shoulder symptoms. This is part of Anna Higo’s Doctoral research.

  • Publications
    Publications

    Systematic review protocol on PoTS management

    A protocol for a systematic review examining the different potential components that could be included in an intervention to manage PoTS, and looking at whether the components are effectiveness in improving outcomes for people living with PoTS. This is part of Helen Eftekhari’s Doctoral research.

  • Publications
    Publications

    A physiotherapy case of a person with hypermobile Ehlers-Danlos Syndrome

    This is a case study examining the value of a type of functional support (dynamic elastomeric fabric orthoses) for a person with hypermobile Ehlers-Danlos Syndrome (hEDS). This was following a referral for physiotherapy with hip dysplasia, prior to a right periacetabular osteotomy.

  • Publications
    Publications

    Understanding the future research needs in PoTS

    This is a review that maps all of the literature that existed about Postural Tachycardia Syndrome (PoTS) up until submission for publication. It highlights where the gaps are in the field of research on PoTS.

  • Websites
    Websites

    Design of website and informercial

    Our website and infomercial were designed by Ben Clark Design. See details and pictures at this link.

  • Websites
    Websites

    Shea Palmer’s Professorial lecture

    Professor Shea Palmer’s inaugural lecture at Coventry University on himself and his research progression on symptomatic hypermobility. It covers research that Shea and colleagues have carried out on hEDS/HSD and where he would like to continue research moving forwards.

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