Resources

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

  • Publications
    Publications

    Updated PULSE protocol

    Protocol update for a randomised controlled feasibility trial of exercise rehabilitation for people with postural tachycardia syndrome: the PULSE study

  • Publications
    Publications

    Updated EDS maternity care considerations (2021)

    The British Journal of Midwifery have kindly provided us with a free open access link to this article to host on this website. We are extremely grateful!

  • Websites
    Websites

    Interview with Massage & Fitness Magazine

    An interview in Massage and Fitness Magazine with Sabeeha Malek, Dr Gemma Pearce, and Dr Emma Reinhold about their work on the Beighton Score review paper.

  • Publications
    Publications

    Parents’ experiences of children’s health care for EDS/HSD in the UK

    Parents’ Experiences of Children’s Health Care for Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

    This is an Accepted Manuscript of an article published by Taylor & Francis in Children’s Health Care on 25th September 2021, available online: http://www.tandfonline.com/10.1080/02739615.2021.1960165

  • Websites
    Websites

    STARS – Syncope Trust And Reflex anoxic Seizures

    Ensure that anyone presenting with unexplained loss of consciousness receives the correct diagnosis, the appropriate treatment, informed support and sign posting to the appropriate medical professional.

  • Publications
    Publications

    Pathogenesis of EDS/HSD paper

    The Role of Cell Adhesion and Cytoskeleton Dynamics in the Pathogenesis of the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

  • Publications
    Publications

    Beighton Score Review Paper

    The Beighton Score as a measure of generalised joint hypermobility

  • Documents
    Documents

    EDS & Pregnancy Poster

    Poster on Women’s experiences of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders during pregnancy, birth and beyond.

  • Publications
    Publications

    Text-based instant messaging as an online interviewing tool.

    The development of synchronous text-based instant messaging as an online interviewing tool.

  • Publications
    Publications

    PULSE protocol

    Protocol for a randomised controlled feasibility trial of exercise rehabilitation for people with postural tachycardia syndrome: the PULSE study

  • Websites
    Websites

    CU PULSE website

    The official page for the PostUraL tachycardia Syndrome Exercise (PULSE) study

  • Websites
    Websites

    British Heart Foundation

    The BHF is a charity that funds vital research into heart disease, stroke, and vascular dementia, and their risk factors.

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