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Coles Diagnosis: Rare Disease at Village Green Shopping Centre in Vernon, BC
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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.
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.
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