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Author: Oliver Quarrell Publisher: ISBN: 9780192629302 Category : Family & Relationships Languages : en Pages : 164
Book Description
Huntington's Disease is a genetically inherited condition, the result of severe nerve-cell damage in the brain. Due to the recent identification of the gene involved, and the debilitating nature of the disease, a great many more people are now affected either directly or indirectly (familiesand carers) by this condition. The majority of people develop the disease between the ages of 35 and 55, so for those that are aware of a genetic inheritance, there are enormous problems to confront - should you carry on life as normal? Should you start a family? In this, the first book onHuntington's disease written for sufferers and their families, advice is given on living with this disabling illness. Written as much for carers as for the patients themselves, the book aims to answer some of the questions that both sufferer and carer might have. With the identification of theresponsible gene, genetic counselling is now available for those at risk of developing the disease. Though some may wish not to use these services, the book clearly explains the role of the counsellor, and what help is additionally available from the various patient organisations worldwide.
Author: Oliver Quarrell Publisher: ISBN: 9780192629302 Category : Family & Relationships Languages : en Pages : 164
Book Description
Huntington's Disease is a genetically inherited condition, the result of severe nerve-cell damage in the brain. Due to the recent identification of the gene involved, and the debilitating nature of the disease, a great many more people are now affected either directly or indirectly (familiesand carers) by this condition. The majority of people develop the disease between the ages of 35 and 55, so for those that are aware of a genetic inheritance, there are enormous problems to confront - should you carry on life as normal? Should you start a family? In this, the first book onHuntington's disease written for sufferers and their families, advice is given on living with this disabling illness. Written as much for carers as for the patients themselves, the book aims to answer some of the questions that both sufferer and carer might have. With the identification of theresponsible gene, genetic counselling is now available for those at risk of developing the disease. Though some may wish not to use these services, the book clearly explains the role of the counsellor, and what help is additionally available from the various patient organisations worldwide.
Author: Thomas D. Bird Publisher: ISBN: 0190684224 Category : Medical Languages : en Pages : 289
Book Description
Can You Help Me?: Living in 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.
Author: Michael R Hayden Publisher: Springer ISBN: 9781447113102 Category : Medical Languages : en Pages : 192
Book Description
It is a pleasure to send Dr. Hayden's monograph on its way to as yet unknown but hopefully widespread destinations with all the valedictions a Foreword may contain. Since I met the author in Cape Town in 1978 I have been struck, on numerous occasions, by the fortuitous combination of an inquisitive mind, a creative drive, a sharp awareness of the historical and social setting of phenomena, and a solid discipline which his personality displays behind a good-natured laugh. If a tree is known by its fruits, both Dr Hayden's PhD thesis and the present monograph afford quite an insight into the auctor intellectualis. The amalgamation of the terrible mise ry behind scientifIc facts and the elegantly artistic presentation of this book will leave none of its readers unperturbed. It reminds me of Nietzsche's 'Denn das Schöne ist nichts als des Schrecklichen Anfang, und wir bewundern es so weil es gelassen verschmäht uns zu zerstören' (Beauty is but Horror's beginning, and we admire it because it resignedly spurns to destroy us). The book is a denial, a testimony against Juvenal's spurious 'Sternmata quid faciunt ... ' (of what value are pedigrees). For it is the very genetical prolongation of misery over the centuries that brought Huntington's chorea to South Africa, Australia and the USA from the shores of sea-faring seventeenth-century England and Holland.
Author: Alice Wexler Publisher: Yale University Press ISBN: 0300151772 Category : Medical Languages : en Pages : 277
Book Description
A groundbreaking medical and social history of a devastating hereditary neurological disorder once demonized as “the witchcraft disease” When Phebe Hedges, a woman in East Hampton, New York, walked into the sea in 1806, she made visible the historical experience of a family affected by the dreaded disorder of movement, mind, and mood her neighbors called St.Vitus's dance. Doctors later spoke of Huntington’s chorea, and today it is known as Huntington's disease. This book is the first history of Huntington’s in America. Starting with the life of Phebe Hedges, Alice Wexler uses Huntington’s as a lens to explore the changing meanings of heredity, disability, stigma, and medical knowledge among ordinary people as well as scientists and physicians. She addresses these themes through three overlapping stories: the lives of a nineteenth-century family once said to “belong to the disease”; the emergence of Huntington’s chorea as a clinical entity; and the early-twentieth-century transformation of this disorder into a cautionary eugenics tale. In our own era of expanding genetic technologies, this history offers insights into the social contexts of medical and scientific knowledge, as well as the legacy of eugenics in shaping both the knowledge and the lived experience of this disease.
Author: M. Mohamed Essa Publisher: ISBN: 9781536138559 Category : Health & Fitness Languages : en Pages : 296
Book Description
Food and Huntington's Disease is another book in a series of books related to the benefits of food on brain function. This book designates the possible beneficial effects of edible natural products and their active materials on Huntington's disease. This is a progressive neurodegenerative disease that could cause uncontrolled movements, cognitive difficulties and emotional disturbances. The aim of this book and its series is to create awareness in general audiences about the dietary perception to reduce the occurrence of Huntington's disease. This may enable a better understanding and possibly reduce the cost on medical bills for patients (approximately $4500/year/person) and the insurance companies. Literature revealed that this disturbing neurodegenerative disorder has a higher prevalence in Europe (3-7 in 100,000), North America (4-5 in 100,000), and Australia than in Asian countries. Studies suggest that mutation in the HD gene and the repeat expansion play an important role in the pathophysiology of this disease. The genetic defect underlying Huntington's disease is unstable, caused by an abnormal CAG expansion within the first exon of the Huntingtin gene (HTT), leading to an expanded polyglutamine (polyQ) track in the HTT protein. This disease is an inherited one. Even though the prevalence rate is moderate, scientists predict that a lot of people possess the possibility of carrying this disease. Mitochondrial dysfunction and oxidative stress could very highly play a role in this disease. In the last decade, the benefits of food on many diseases - including brain diseases - were explored. This book aims to summarize the recent updates on the benefit of natural edible materials and their active principles on the prevention or delaying of the progression or the management of this disease. The editors feel highly obligated to all the contributors for this initiative. Undeniably, they believe that the information provided in this book would raise the awareness of the readers and could possibly help them to understand the disease process and the benefits of food items on Huntington's' disease management.
Author: Steven Beatty Publisher: Library and Archives Canada ISBN: 9781775317807 Category : Health & Fitness Languages : en Pages : 116
Book Description
All proceeds from the sale of this book are going to the Huntington Society of Canada for research and family support services! ---- This book is for those of us going through the "in-between years": the years following our HD genetic testing, but before the symptoms of the illness have begun to take hold. The years when we may struggle with this look into the crystal ball we've been given, for whatever reasons are personal to us. The years when we symptom-hunt and worry about every forgotten purse and each trip and stumble. The years when we watch and care for other Huntington's disease affected loved ones and wonder, how long until it's our turn. ---- Excerpt from the book: "It's not the result we were hoping for." Those eight little words echoed in my head like a Mack Truck rolling through a tunnel. A Mack Truck in the form of a telephone call from a Genetic Counsellor at my local hospital. "What, me?", was my gasped response. "Yes," she replied, "I'm sorry." I sat there in total stunned silence and started to think about all the consequences related to what she had just told me. What this news would mean for my family and me, possibly for generations to come. That was the moment my life completely changed. Changed in pretty much almost every conceivable way. How I looked to the future. How I reflected on the past. How I coped with the present. It changed what I found to be important and what I saw not even to be worth my time. It was the day I found out I was positive for the gene mutation that's responsible for Huntington's disease. The disease that I've heard some resources refer to as "one of the worst diseases you can get" and "it's like having Alzheimer's, ALS and Parkinson's disease all at the same time!" Where was I to go from there? What was I supposed to do? How could I cope with the knowledge that, unless a sufficient treatment came along soon, this disease was going to kill me in the not too distant future? I had no idea what to do next, and I felt utterly alone. ---- Chapters in this book include: 1. Steve's Huntington's Disease Story 2. What Is Huntington's Disease? 3. What Does My CAG Number Tell Me? 4. Becoming Involved with Huntington's Disease Associations 5. Your Health Care Team 6. Participating in Research 7. Symptom Seeking 8. Fear 9. When Do I Tell People About My Huntington's Disease? 10. Anger 11. Making Babies 12. Staying Positive 13. Exercise 14. Caring 15. Guilt 16. Journaling 17. Planning Ahead 18. Following the Latest Developments in Huntington's Disease News 19. Is Huntington's Disease Genetic Testing Even Worth the Trouble? 20. When Symptoms Start 21. I Look Forward to The Day When There Won't Be A Need for This Book 22. Calls to Action ---- What is Huntington's Disease?: Huntington's disease is a neurodegenerative disease that affects parts of the brain and leads to behavioural, cognitive and movement disorder symptoms. HD is caused by a mutation in a specific gene, now known as the Huntington gene. Huntington's disease is tragic in that it affects people in their prime. Symptoms often begin between the ages of 30- to 50-years-old. Currently, there is no cure for HD and once those affected become symptomatic, death usually occurs in 10-15 years. ---- About the author: Steven Beatty is part of a Huntington's disease family himself and received a positive result on his HD predictive genetic testing in 2015. Since that time, he has developed a passion directed at advocating for the Huntington's disease community. ---- The Huntington Society of Canada is a not-for-profit charitable organization which raises funds to deliver individual and group counselling service to support individuals and families living with Huntington disease (HD) and to fund medical research to delay or stop the progression of the disease
Author: Therese Crutcher-Marin Publisher: Norcal Publishing Company ISBN: 9780998442204 Category : Biography & Autobiography Languages : en Pages : 312
Book Description
Therese Crutcher is not a risk taker. Through meticulous planning, she eliminates as much uncertainty from her life as she can. Yet during her senior year of college, blithely planning to marry her beloved John Marin, she is suddenly thrown into turmoil when John's sisters announce they finally know what killed their mother, Huntington's disease. John and his three older sisters have a fifty-percent chance of inheriting Huntington's, which slowly kills the brain cells that affect movement and cognition. John says, "You never know what will happen in life," but his at-risk status shakes Therese to the core. How can she live with such uncertainty? Eventually, Therese takes the biggest gamble of her life and marries John. All four Marins choose to ignore what they cannot change; and in the early years, John and his sisters--a big part of Therese's life-- remain healthy, fun-loving, and as close as ever. When she observes symptoms in Lora, the oldest sister, Therese fears that Huntington's has found her. And when Marcia is diagnosed with the disease, Therese--with two small children, a career, and a husband now in the prime age range to show symptoms--struggles against the demons that feed her fear.When Marcia's symptoms worsen, Therese lovingly oversees her care. Several years later, Cindy, the youngest, also develops Huntington's, and Therese does the same, feeling that managing the care of these loved ones is the greatest gift she can give them.Thus unfolds a life filled with unpredictability, tough choices, and pain, and yet full of love, good times, and great joy. Therese comes to realize that the uncertainty she willingly took on has opened her heart to love more deeply; that acknowledging her world could change overnight has made her life richer. She has learned to overlook shortcomings and to compromise, to let go of anger, to find joy in the simple things. And though John's sisters leave this world far too soon, the Marin siblings, she realizes, have taught her about embracing life, forgiveness, and unconditional love.
Author: Oliver Quarrell
Author: Oliver Quarrell
Author: Thomas D. Bird
Author: Jane S. Paulsen
Author: Michael R Hayden
Author: 
Author: Adam Rosenblatt
Author: Alice Wexler
Author: M. Mohamed Essa
Author: Steven Beatty
Author: Therese Crutcher-Marin