About the author
Claire Smith is a reviewer for the National Institute for Health Research, working to shape research and help others understand its impact. She also runs her own business, creating publications that provide evidence-based information on self-management for those with chronic long-term health conditions, and providing content assessment and writing services to charitable and non-profit organisations. Since 2017, Claire has been a member of the International Consortium on Ehlers-Danlos Syndromes and Related Disorders, working as part of the Hypermobile Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorders Committee. There, she works alongside medical professionals as a community expert, clarifying patient values, challenges and priorities, in order to inform better clinical decision-making.
Claire is a dedicated advocate for person-centred care, helping individuals improve their physical and emotional health, and collaborating with health care teams to foster better understanding between service users and health care professionals. Past roles in public health and for the Hypermobility Syndromes Association provided her with invaluable opportunities to work with people of all ages, abilities and backgrounds. Many, with whom she worked, had complex long-term physical and mental health conditions and had struggled for years with a lack of service provider knowledge, finding no clear treatment pathway available. Some described medical treatment that had made them worse, not better, and most had received fragmented and single-body-system, rather than holistic, care – something that is not only detrimental to their physical and psychosocial wellbeing but is also non-cost-effective for health care providers. For many, inappropriate interventions and poor past experiences had led to increased physical and mental stress and, in some cases, the understandable adoption of coping mechanisms that became a barrier to further management. Often these individuals reported feeling disbelieved and frustrated, and lacked confidence in the professionals they saw. Claire worked hard to provide reassurance and validation, advice and explanation.
With this in mind, Claire, who is herself affected by symptomatic hypermobility, spent five years writing what she describes as ‘the kind of book I would have liked to have been available when I was searching for information – one that empowers patients with the knowledge and tools to advocate for their care and well-being.’, clearly answering the questions to which people most want answers and providing information on evidence-based treatment and self-management. She hopes this book, Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder, does just that.
Outside of work, Claire enjoys spending time with her family, laughing with friends, and taking her much-loved Border Collie for walks by the sea.
Publications:
In addition to this book, Claire is an author and co-author of several other publications, including:
Preoperative Assessment Guidance: hEDS and HSD. ISBN-978-1-9997300-1-7 (2019)
Dental Assessment Guidance: hEDS & HSD. ISBN-978-1-9997300-2-4 (2019)
Preoperative Assessment Guidance: MCAS. ISBN: 978-1-9997300-4-8 (2023)
Living Well with a Heritable Disorder of Connective Tissue. (HMSA, 2016 edition)
The Educator’s Guide to the Hypermobile Student. (HMSA, 2014 edition)
