Feedback, received from medical professionals, relating to the book 'Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder.” includes:

 

‘Marvellous work all round!! The book is excellent. Very informative and very well researched. I love it! An enormous piece and extremely well written... I will share it with my colleagues.’

Dr Jane Simmonds - Co leader of the physiotherapy team in hypermobility related conditions 

 

‘Kudos on a fabulously valuable endeavor.  [Your book] is unbelievably thorough, detailed, and up to date...’ ‘...Your book is really going to educate and enlighten a lot of people. Now if only we could get medical schools to use it as a text for a course!’

Dr Alan Pocinki FACP. Clinician working with patients with EDS and related conditions

 

‘You must publish this book Claire and as soon as possible. I will be recommending your book to my patients - very well done.‘   

Prof. Seneviratne - Director of the Centre for Mast Cell Disorders, and Consultant in Clinical Immunology and allergy

 

‘I have just received a very ambitious and comprehensive book (rather heavy companion, spirally-bound 186 pages in A4, ie, a lot of text, colour images, graphics, illustrations), newly published, written by Claire Smith... She has collaborated with several experts so the content is very up-to-date... all new definitions and concepts are described in a legible and easy way. No major medical prerequisites are required and the style is clear and easy to understand. It is primarily aimed at affected individuals, but the book is also a very good introduction for hospitalists to quickly get an insight into what [hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder] are about.'

Dr Eric Ronge (Sweden) - Senior Paediatrician specialising in disorders of the connective tissue.

 

‘I commend this terrific book to anyone wishing to learn more about these conditions... This is very much a book for patients, carers, and health and social care colleagues alike.’

Dr Alan Hakim - Consultant Rheumatologist, and Chief Medical Advisor to the Hypermobility Syndromes Association

 

‘Congratulations on writing a very comprehensive overview.’

Dr Lesley Kavi - Managing Trustee at PoTS UK

 

‘I have just received your book. I would like to sincerely compliment you on a job well done. I can imagine the commitment and effort that has gone into writing it. This book was badly needed and is excellently researched and beautifully written. I will certainly recommend your book to all my patients with hEDS and HSD and medical professionals who treat them.' 

Dr Deepak Sharan, Medical Director, RECOUP Neuromusculoskeletal Rehabilitation Centre, India

 

‘‘Your fabulous book!’ - Just thought you might like to know I took your book with me to a meeting of the EDS Spotlight Project Steering Group on Wednesday... [The Royal College of General Practitioners (RCGP) and I would] like to ask if we might be able to use some extracts from your work for the Toolkit. ...The RCGP is keen to have everything it produces as strongly evidence-based as possible, and clearly your work is exactly that...

Dr Emma Reinhold, enquiring on behalf of Royal College of General Practitioners

 

‘Just a note to say a HUGE thank you for sending a copy of your new book. It’s superb! Very much appreciated. ...I will take time to thoroughly explore it over the next few weeks and will share the link with fellow colleagues and patients.’

Patricia McLaughlin, Snr Clinical Nurse Specialist

 

‘[Claire] has written this phenomenal book,‘Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder’, which covers symptomology, diagnosis, and management extensively. It’s written in a reference manual format but in a friendly and easily accessible style.’  ‘...It’s a book that patients and doctors alike should have on their bookshelves.‘   

Dr Emily Casanova - Doctor of Anatomy Science and Neurobiology 

'We would also like to say congratulations to Claire – this has been a 5 year project for her; it is extremely well written and great care has been taken to explain medical terms.' 

Donna Wicks CEO for the HMSA

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Feedback from patients and lay persons includes:

‘Wow, incredibly helpful. I was diagnosed years ago and I still didn't know about at least half of this. It explains SO much!’

Patient reviewer

 

‘I'm so glad I bought your book on EDS and HSD. There are so many medical professionals I'd love to give one to! It's like a Haynes Manual for my body!’ 

Sally-Ann  (Twitter)

 

‘I recently purchased a copy of your new book 'Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder' and am delighted with it. The information is life-changing for me, helping me to a diagnosis of a health condition I have suffered from for years.’

Patient reviewer

 

‘I received my book and was beyond surprised at the amount of information it provides! This is a HUGE resource to the EDS community and I am so thankful to [the author] for committing to such a large project for our community! I have recommended it to my specialists and physicians, as well as my local support group of over 100 active members.’ 

EDS Support Group, USA

 

‘THANK YOU for the lovely book -- I just received it today when I went to my office. It was so nice to see it waiting for me on my desk, and I was so excited to leaf through it. ...what an important book and contribution to patients and medical professionals. Thank you again and again for writing it and sending it.’

Patient reviewer

 

‘Received my copy and I am in shock at how well written and to the point this book is. It’s like my autobiography of medical issues past and present, and medical care and lack of care.’

Purchaser feedback

 

‘Best book I have read on EDS (and read lots!!). So glad that MCAD and PoTS are in there too. It was like reading a book about my son.’

Purchaser feedback

 

‘Thank you for writing such an informative book with explanation, reference info and things clearly explained. Thank you so much, I will be taking this with me to all mine and my daughter’s appointments.’

Purchaser feedback

 

‘It's an utterly fantastic book and I would tell anyone, or a member of their family, who suffers to buy it!’

Purchaser feedback

 

‘Could not recommend this book more! Extremely well written and extensive about all parts of hEDS and it's comorbidities.’ 

Purchaser feedback

 

‘This book is a ‘must have’ for anyone affected by HSD or hEDS (and the health care professionals caring for them).  It clearly explains all the different aspects of these complex disorders, and also explains how each patient, and those supporting them, can best contribute towards treatment and management.’ 

Patient Reviewer

 

‘This book has helped me so much! I just got diagnosed with hEDS Jan 30th at the U of Iowa genetics clinic (my sister & niece, too!), but my journey took 43 years.

Reading this book helped me see how all the puzzle pieces "fit," finally! Highly recommend!’

Karrie Higgins (Twitter)

 

I finished reading it this morning, huge thumbs up! It was like reading the life stories of my daughter and myself with a lot of information thrown in for good measure. Brilliant, well done to the author and everyone involved 

Jay (Twitter)

 

I have this book to. It made me cry with the realism and how much I acknowledge personally. If I was stupidly rich then I would personally pay for copies to be sent to every GP surgery in the UK! Sadly I'm not. Even then it wouldn't be guaranteed everyone that helps others would read it and not judge it X

(Comment via Facebook)

 

It’s a fantastic book, I have recommended it to lots of people including the professionals involved in my daughters care, those who have seen it have been very impressed xxx

Elaine (Facebook)

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