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Can You Help Me?: Inside the Turbulent World of Huntington Disease

Autor Thomas D. Bird
en Limba Engleză Hardback – 12 apr 2019
Can You Help Me?: Inside the Turbulent World of Huntington Disease shares the surprising, insightful, challenging, and even encouraging stories of patients and their families who live with Huntington Disease. Having seen patients for more than 40 years, Dr Thomas Bird, a pioneer neurogeneticist, adds a human touch to this genetic brain disease that devastates persons during mid-life when they can least afford it. With a brief history of Huntington Disease and the occasional scientific detail, the true heart of the book is the human experience of the disorder: · The man who cannot stay out of prison because he is addicted to being a burglar. · Another man shoots and kills his roommate while watching television and cannot explain why he did it. · The woman with Huntington Disease copes with her depression by using Texas line dancing. · A twelve year old girl with juvenile Huntington Disease who can barely walk and talk, but her classmates rally around with touching and heartfelt support. · And the 72 year old man with late onset Huntington Disease and severe depression is made worse by ECT, but improved (for a while) with Transcranial Magnetic Stimulation. These are just some of the compelling stories of people of all ages and in all walks of life who feel trapped by a progressive degenerative brain disease from which there is no escape.
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Specificații

ISBN-13: 9780190684228
ISBN-10: 0190684224
Pagini: 286
Ilustrații: 19
Dimensiuni: 142 x 213 x 28 mm
Greutate: 0.45 kg
Editura: Oxford University Press
Colecția OUP USA
Locul publicării:New York, United States

Recenzii

Dr. Bird succeeds in capturing the pain, frustration, and stigma associated with Huntington's disease ... His writing is straightforward, easy to read, and engaging.
It is often said that when you have seen one Huntington's disease (HD) patient, you have seen just one HD patient. While we have known the identity of the genetic cause of HD for over 25 years, we still have a long way to go to understand the clinical manifestations of this horrible disease. How can one genetic mutation result in such as wide array of physical, cognitive, and emotional symptoms? This book is a wonderful assembly of stories from his years of caring for HD patients and families that illustrate the vast symptomatic heterogeneity of the disease. The stories provide insight into the complex and emotional situations that confront HD families on a daily basis. While heartbreaking, Dr. Bird also shows us how individuals can accept the devastating prognosis and find a level of love and fulfillment that they would not have otherwise achieved.
In this unique book, Dr. Thomas Bird reports his extraordinary experience of caring for over 1000 patients with Huntington's disease. The chapters are packed with detailed cases illustrating the breadth of neurological and psychosocial dysfunction caused by the disease and show the depth of Dr. Bird's knowledge and his commitment to helping his patients. He explains scientific and medical facts clearly to all readers. The cases also illustrate the crucial role of genetic testing and counseling, and show how the success of medical care depends largely on the extent to which patients have a supportive social environment of friends and family. Dr. Bird affirmatively answers the question he posed in the title by demonstrating the true nature of quality medical care of patients with HD as practiced by a dedicated and master clinician.
This book is an outstanding guide for anyone affected by or interested in Huntington disease. The diverse experience of people with Huntington disease is richly described through both the scientific introduction and the personal stories from Dr. Bird's decades of work with patients and families. The complex issues regarding genetic testing are thoughtfully and thoroughly presented. A powerful and hopeful resource for anyone.

Notă biografică

Dr. Thomas Bird is a Professor of Neurology and Medical Genetics at the University of Washington who has been a pioneer in the field of Clinical Neurogenetics. He has received numerous national awards for his research on hereditary diseases of the nervous system including Alzheimer and Huntington diseases and established the first clinic for adults with neurogenetic diseases in the United States.