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Diagnosis: Rare Disease
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- FormatePub
- ISBN978-1-937376-40-6
- EAN9781937376406
- Date de parution14/09/2014
- Protection num.pas de protection
- Infos supplémentairesepub
- Éditeurallstarpress
Résumé
Denise Crompton's "Diagnosis: Rare Disease" gives a inside look of what life is like for families that have a member with a rare disease. Crompton details the journey of 13 families, including her own, who have one or more children with a rare disease called Mucolipidosis. The hearthbreaking, yet often-times uplifting stories wade through the erratic diagnosis process, medical muck-ups, endless pain, a plethora of medical appliances and home modifications, special education, multiple hospitalizations and surgeries, unrelenting stress and the ever-present fear of death."The book highlights how stoic, resilient, strong and resourceful these families are, " explains Carolyn Paisley-Dew, ISMRD Board Member, Australia.
"It underlines the importance of networks to allow these isolated families to support each other and to give them a sense of belonging. Denise Crompton presents these stories in a style that is compassionate and easy to read.""Diagnosis" is a must-read for medical professionals who wish to learn how to work with families in these difficult situations. Families dealing with a rare disease will recognize themselves in this book that is destined to be a classic in its field.
Published by All Star Press - Books that Change Lives.
"It underlines the importance of networks to allow these isolated families to support each other and to give them a sense of belonging. Denise Crompton presents these stories in a style that is compassionate and easy to read.""Diagnosis" is a must-read for medical professionals who wish to learn how to work with families in these difficult situations. Families dealing with a rare disease will recognize themselves in this book that is destined to be a classic in its field.
Published by All Star Press - Books that Change Lives.