The Guide to Good Health for Teens and Adults with Down Syndrome by Brian Chicoine, MD and Dennis McGuire, MD.
The authors are physicians at the Adult Down Syndrome Center of Advocate Lutheran General Hospital in Park Ridge Illinois which has served more than 4500 people with Down syndrome since it opened in 1992. The authors tell us that neither of them are parents of a child with Down syndrome, but are willing to work with and listen to people with Down syndrome and have done so for many years (many readers will know the authors from their presentations at the National Down Syndrome Congress Conferences each year.)The book is based firmly in research and clearly benefits from their considerable experience.
Written in a personable tone that is informative and low on medical jargon there are chapters discussing each bodily system including skin, eyes, respiratory and digestive systems and more. Each chapter focuses on things things that are more common or are experienced differently for people with Down syndrome. There are also sections about health and wellness in the community, as well as outpatient and inpatient care--and handy things like 'what to look for in a physician.'
The authors share a nuanced understanding of the ways cognitive disabilities affect both health issues and their treatment. They recognize tendencies that people with Down syndrome seem to follow (without becoming stereotypical!) They also acknowledge some differences that are evolving as the quality of things like education and healthcare for people with Down syndrome improve.
I really appreciated things like the section on encouraging more fluids as well as the chapters on overarching issues like Preserving Health and Well-Being over the Long Term, and discussions about advance directives and such.
The Inspire Awards: the complete speech
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