About the author
Claire Smith is Publications Editor & Partnership Director at the Hypermobility Syndromes Association (HMSA), a national charity supporting those with heritable disorders of connective tissue including Ehlers-Danlos syndrome, Marfan syndrome, Osteogenesis imperfecta and Stickler syndrome, and hypermobility spectrum disorders of all aetiologies.
On a daily basis, Claire works either in person, online or by telephone with individuals who have multi-systemic disorders. Many have struggled for years with lack of service provider knowledge, and find no clear treatment pathway available. Some describe
medical treatment that has made them worse, not better, and most have received fragmented and single-body-system, rather than holistic, care; something which is not only detrimental to their physical and psychosocial wellbeing, but is also non-cost-effective for health care providers. They report feeling disbelieved and frustrated, and often lack confidence in the professionals they see. Inappropriate interventions and poor past experiences may have resulted in increased physical and mental stress and, in some cases, the understandable adoption of coping mechanisms that can sometimes become a barrier to further management. Claire works hard to provide reassurance and validation, advice and explanation. With this in mind, she has spent the past five years writing what she describes as ‘the kind of book I would have liked to have been available when my own daughter was first diagnosed’; 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.
Claire, who is herself affected by symptomatic hypermobility, is also a patient reviewer for the National Institute for Health Research, working to shape research and improve practice within the NHS and public health. Publications she has produced, on behalf of the HMSA, include ‘Living Well With a Heritable Disorder of Connective Tissue’, the biannual HMSA Journal, and the ever popular ‘Educator’s Guide to Hypermobile Students’. In her role as Partnership Director, Claire works collaboratively with charities such as Ehlers-Danlos Support UK and PoTS UK, establishing links and finding ways to share knowledge, skills and information, and will this year (2017) be joining the expert patient panel of the EDS International Consortium. Claire also works closely with the HMSA medical advisory board and trustees, and forms part of the team currently working alongside Dr Philip Bull, to set up a ‘care web’ model for patients with hypermobility related disorders; linking together a network of allied healthcare professionals keen to better support patients.
In her spare time (which she doesn’t get a great deal of), Claire enjoys spending time with her family, laughing with friends, and taking her Border Collie, Alfie, for long walks by the sea.