Diagnosis
Rare Disease
Herausgeber: Michaud, Shaunee; Nilsen, Richard J
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"Rare Disease" the diagnosis that no parent ever wants to hear. "This book gives a heartbreaking exposé of what life is like for families that have a member with a rare disease," explains Carolyn Paisley-Dew, ISMRD Board Member. "It follows the journey of 13 families who have one or more children with a rare disease called Mucolipidosis, as they 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...
"Rare Disease" the diagnosis that no parent ever wants to hear. "This book gives a heartbreaking exposé of what life is like for families that have a member with a rare disease," explains Carolyn Paisley-Dew, ISMRD Board Member. "It follows the journey of 13 families who have one or more children with a rare disease called Mucolipidosis, as they 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, and how heartless, or thoughtless, some medical professionals can be. It underlines the importance of networks to allow these isolated families to support each other and to give them a sense of belonging. Author Denise Crompton presents these stories in a style that is compassionate and easy to read. Other families with a rare disease will recognize themselves in this book. It is a must for medical professionals, especially those who want to understand the families and how to best work with them during these difficult times. What Others Are Saying About this Book: "Wow, breadth & depth: The various chapters of Diagnosis: Rare Disease cover every aspect of the impact of a rare disease on individuals. Within each chapter is deep insight into the tremendous differences of impact on each of 15 Individuals. In addition the style is compelling reading." ~ Bob Gorman - Independent Research Professional "Denise Crompton captures the essence of living with a rare disease; the quest for a diagnosis, the fears, frustrations, heartbreaks, navigating the medical establishment, and the loss of loved ones. As one who has children battling a rare disease, I am encouraged by the journeys of the individual families Denise writes about, knowing that I am not alone in my feelings and struggles, and energized by the families' determination to live their lives to the fullest." ~ Susan Anganes "As a retired operating room nurse, I have been amazed at the history of Kelley Crompton. During her lifetime she underwent numerous surgeries in hopes of improving her life style, preserving the same and hoping for a cure. I know how tough it is to enter an operating room the first time but returning again and again can be demoralizing. I can tell you firsthand how those giving such care are frustrated beyond belief. We are there to help and hope for lasting remedies. To see the same patient return numerous times is heart wrenching. My hope is that all health care givers will read this book so that the care the give will be compassionate. Sometimes just being there, truly listening and supporting a patient is all we can do. But we must start!" ~ Jeanne C. Sturrock, retired operating room nurse "Regarding the topic of Diagnosis: Rare Disease, Denise Crompton amply demonstrates two of her important assets: one is the personal experience with ML III in her own daughter and two, her manifest ability to widen the subject and to bring a streamlined report on a number of other patients and families with either ML II or ML III. The book is to become a classic in the still little known world of very rare or orphan hereditary disorders." JG Leroy MD. PhD Professor & Chairman Emeritus Depts.Pediatrics & Med. Genetics Univ. Hosp. & Univ. Ghent GHENT, Belgium Senior Research Scholar Greenwood (S.C.) Gen
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