We’ve collated useful documents, videos, support and more for anyone interested in, working with, or suffering from hEDS or HSD.
This is a pre-print paper about the process of co-creating a physical activity intervention and how to test how feasible it is. 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.
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.
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.
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.
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.
Our website and infomercial were designed by Ben Clark Design. See details and pictures at this link.
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.
Here is the infomercial that we co-created about hypermobile Ehlers-Danlos syndrome and hypermobility Spectrum Disorders. It also talks about considerations during pregnancy.
Protocol update for a randomised controlled feasibility trial of exercise rehabilitation for people with postural tachycardia syndrome: the PULSE study
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!
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.
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
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