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• W2029046539 abstract "Wiley-Liss, 1999. £38.95 hbk (293 pages)ISBN 0 471 29686 4In medicine, the search for a diagnosis has not always been regarded as a worthwhile venture. Cynics will suggest that, while doctors relish any opportunity to show off arcane knowledge of rare conditions, after solving the intellectual problem, medical men often have little stomach for long-term ministering to more mundane physical and psychological needs of their chronically sick or handicapped patients. This view is unfair, although not without a grain of truth. However, clear confirmation of the value of a diagnosis emerges from Hassold and Patterson’s book on Down syndrome. A slim volume, it consists of essays written by professionals from different disciplines, by families and by affected individuals. I was going to write ‘by patients’, but that would have contradicted the purpose of the book, the cementing of a partnership that aims to provide better care, resources and opportunities for Down syndrome individuals. Hence the subtitle, ‘A Promising Future, Together’.Because the common goal is enhancement of the lives of those who are affected by Down syndrome, it seems appropriate that the book opens with a chapter on advocacy that is written by the father of Tiffany, a young girl with Down syndrome who was adopted at the age of four. After this, the bulk of the book discusses appropriate health care for Down syndrome individuals, including controversial alternative therapies, and there are many informative and illuminating essays on behavioural, social and educational issues. I thought that Hassold and Patterson’s own contributions on genetics were succinct and nicely understated. Inevitably, not all the essays are easy going, but there are sufficient gems for every reader, and the great diversity of backgrounds that each of the 34 contributors comes from enhances the emerging bigger picture. Naturally, it is at the end of the book that the most memorable contributions are made – by Brenda, Chris, Jason, Mitchell, Mia and Christi, six young people with Down syndrome who write about their experiences, often in a way that causes a lump in the throat: ‘There have been many challenges in my life but as I have succeeded, I feel much taller than my 4 feet 9 inches.’ As I read these essays I was imbued by the book’s overall positivity and optimism (here, there is no discussion of prenatal diagnosis or screening), but I couldn’t help but be a little saddened by the thought that, for every child who is affected by Down syndrome, there are at least two or three children and their families who have to cope with similar problems, but without the same sense of community, simply because there is no firm medical diagnosis to be used as a clarion call or focal point. However, if we learn from the zeal, professionalism and humanity evident in this volume, the lot of all disabled individuals can but improve.The editors, Terry Hassold and David Patterson, are therefore to be congratulated on making the volume so useful and accessible to their very wide target audience that includes parents, physicians and professionals who work in health care, education and social services. Although readers of TiG are not specifically mentioned, as I come from Glasgow, a town where plain speaking is traditional, let me tell you that this volume is mandatory reading for anyone who really and truly seeks knowledge about Down syndrome." @default.
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• W2029046539 date "1999-10-01" @default.
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• W2029046539 title "Partners, not patients" @default.
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