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  • Format: ePub

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
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Produktbeschreibung
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.


Dieser Download kann aus rechtlichen Gründen nur mit Rechnungsadresse in A, B, CY, CZ, D, DK, EW, E, FIN, F, GR, H, IRL, I, LT, L, LR, M, NL, PL, P, R, S, SLO, SK ausgeliefert werden.

Autorenporträt
Denise Crompton is the author of two books about rare diseases and the struggles that families face who have children affected. Her latest is "Diagnosis: Rare Disease" published by All Star Press - Books that Change Lives.