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Inhaltsangabe: "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.) Genetic Center Diagnosis: Rare Disease is published by All Star Press - Books that Change Lives

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Denise Crompton
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Buchbeschreibung All Star Press, 2014. PAP. Buchzustand: New. New Book. Delivered from our UK warehouse in 3 to 5 business days. THIS BOOK IS PRINTED ON DEMAND. Established seller since 2000. Buchnummer des Verkäufers IQ-9781937376178

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Buchbeschreibung Paperback. Buchzustand: New. This item is printed on demand. Item doesn't include CD/DVD. Buchnummer des Verkäufers 8125993

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Denise Crompton
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Buchbeschreibung All Star Press, United States, 2014. Paperback. Buchzustand: New. 241 x 168 mm. Language: English . Brand New Book ***** Print on Demand *****. Rare Disease the diagnosis that no parent ever wants to hear. This book gives a heartbreaking expose 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.) Genetic Center Diagnosis: Rare Disease is published by All Star Press - Books that Change Lives. Buchnummer des Verkäufers APC9781937376178

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Denise Crompton
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Buchbeschreibung All Star Press, United States, 2014. Paperback. Buchzustand: New. 241 x 168 mm. Language: English . Brand New Book ***** Print on Demand *****. Rare Disease the diagnosis that no parent ever wants to hear. This book gives a heartbreaking expose 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.) Genetic Center Diagnosis: Rare Disease is published by All Star Press - Books that Change Lives. Buchnummer des Verkäufers APC9781937376178

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Buchbeschreibung All Star Press, U.S.A., 2014. Soft Cover. Buchzustand: Very Good. No Jacket. VERY NICE CLEAN COPY. Buchnummer des Verkäufers 095681

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Buchbeschreibung All Star Press. Paperback. Buchzustand: As New. This book is almost new and shows only very slight signs of wear. Buchnummer des Verkäufers G1937376176I2N00

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Buchbeschreibung All Star Press, 2014. PAP. Buchzustand: New. New Book. Shipped from US within 10 to 14 business days. THIS BOOK IS PRINTED ON DEMAND. Established seller since 2000. Buchnummer des Verkäufers IQ-9781937376178

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Buchbeschreibung All Star Press. Paperback. Buchzustand: New. Paperback. 402 pages. Dimensions: 9.6in. x 6.7in. x 0.8in.Rare Disease the diagnosis that no parent ever wants to hear. This book gives a heartbreaking expos 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 and 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 and Chairman Emeritus Depts. Pediatrics and Med. Genetics Univ. Hosp. and Univ. Ghent GHENT, Belgium Senior Research Scholar Greenwood (S. C. ) Genetic Center Diagnosis: Rare Disease is published by All Star Press - Books that Change Lives This item ships from multiple locations. Your book may arrive from Roseburg,OR, La Vergne,TN. Paperback. Buchnummer des Verkäufers 9781937376178

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Denise Crompton
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Buchbeschreibung All Star Press. Paperback. Buchzustand: Brand New. 402 pages. 9.50x6.60x1.00 inches. In Stock. Buchnummer des Verkäufers x-1937376176

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Buchbeschreibung All Star Press, 2014. Paperback. Buchzustand: New. book. Buchnummer des Verkäufers 1937376176

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