In-Between Years: Life After a Positive Huntington's Disease Test

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Publisher : Library and Archives Canada
ISBN 13 : 9781775317807
Total Pages : 116 pages
Book Rating : 4.3/5 (178 download)

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Book Synopsis In-Between Years: Life After a Positive Huntington's Disease Test by : Steven Beatty

Download or read book In-Between Years: Life After a Positive Huntington's Disease Test written by Steven Beatty and published by Library and Archives Canada. This book was released on 2018-04-14 with total page 116 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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

Can You Help Me?

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Author :
Publisher : Oxford University Press, USA
ISBN 13 : 0190684224
Total Pages : 289 pages
Book Rating : 4.1/5 (96 download)

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Book Synopsis Can You Help Me? by : Thomas D. Bird

Download or read book Can You Help Me? written by Thomas D. Bird and published by Oxford University Press, USA. This book was released on 2019 with total page 289 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Watching Their Dance

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Publisher : Norcal Publishing Company
ISBN 13 : 9780998442204
Total Pages : 312 pages
Book Rating : 4.4/5 (422 download)

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Book Synopsis Watching Their Dance by : Therese Crutcher-Marin

Download or read book Watching Their Dance written by Therese Crutcher-Marin and published by Norcal Publishing Company. This book was released on 2017-03-22 with total page 312 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Assessing Genetic Risks

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Publisher : National Academies Press
ISBN 13 : 0309047986
Total Pages : 353 pages
Book Rating : 4.3/5 (9 download)

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Book Synopsis Assessing Genetic Risks by : Institute of Medicine

Download or read book Assessing Genetic Risks written by Institute of Medicine and published by National Academies Press. This book was released on 1994-01-01 with total page 353 pages. Available in PDF, EPUB and Kindle. Book excerpt: Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.

Fade into the Bright

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Publisher : Delacorte Press
ISBN 13 : 0593174917
Total Pages : 338 pages
Book Rating : 4.5/5 (931 download)

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Book Synopsis Fade into the Bright by : Jessica Koosed Etting

Download or read book Fade into the Bright written by Jessica Koosed Etting and published by Delacorte Press. This book was released on 2021-04-27 with total page 338 pages. Available in PDF, EPUB and Kindle. Book excerpt: Five Feet Apart meets Tell Me Three Things in this YA contemporary novel about two sisters, one summer, and a diagnosis that changes everything. Abby needs to escape a life that she no longer recognizes as her own. Her old life--the one where she was a high school volleyball star with a textbook-perfect future--has been ripped away. Abby and her sister, Brooke, have received a letter from their estranged dad informing them he has Huntington's disease, a fatal, degenerative disorder that you wouldn't wish on your worst enemy. And when the sisters agree to genetic testing, one of them tests positive. Fleeing to Catalina Island for the summer, Abby is relieved to be in a place where no one knows her tragic history. But when she meets aspiring documentary filmmaker Ben--tall, outdoorsy, easygoing, with eyes that don't miss a thing--she's thrown off her game. Ben's the kind of guy who loves to figure out people's stories. What if he learns hers?

The Neuropathology of Huntington’s Disease: Classical Findings, Recent Developments and Correlation to Functional Neuroanatomy

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Author :
Publisher : Springer
ISBN 13 : 331919285X
Total Pages : 154 pages
Book Rating : 4.3/5 (191 download)

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Book Synopsis The Neuropathology of Huntington’s Disease: Classical Findings, Recent Developments and Correlation to Functional Neuroanatomy by : Udo Rüb

Download or read book The Neuropathology of Huntington’s Disease: Classical Findings, Recent Developments and Correlation to Functional Neuroanatomy written by Udo Rüb and published by Springer. This book was released on 2015-09-29 with total page 154 pages. Available in PDF, EPUB and Kindle. Book excerpt: This monograph describes the progress in neuropathological HD research made during the last century, the neuropathological hallmarks of HD and their pathogenic relevance. Starting with the initial descriptions of the progressive degeneration of the striatum as one of the key events in HD, the worldwide practiced Vonsattel HD grading system of striatal neurodegeneration will be outlined. Correlating neuropathological data with results on the functional neuroanatomy of the human brain, subsequent chapters will highlight recent HD findings: the neuronal loss in the cerebral neo-and allocortex, the neurodegeneration of select thalamic nuclei, the affection of the cerebellar cortex and nuclei, the involvement of select brainstem nuclei, as well as the pathophysiological relevance of these pathologies for the clinical picture of HD. Finally, the potential pathophysiological role of neuronal huntingtin aggregations and the most important and enduring challenges of neuropathological HD research are discussed.

Genetic Twists of Fate

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Publisher : MIT Press
ISBN 13 : 0262518643
Total Pages : 236 pages
Book Rating : 4.2/5 (625 download)

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Book Synopsis Genetic Twists of Fate by : Stanley Fields

Download or read book Genetic Twists of Fate written by Stanley Fields and published by MIT Press. This book was released on 2013-02-08 with total page 236 pages. Available in PDF, EPUB and Kindle. Book excerpt: How tiny variations in our personal DNA can determine how we look, how we behave, how we get sick, and how we get well. News stories report almost daily on the remarkable progress scientists are making in unraveling the genetic basis of disease and behavior. Meanwhile, new technologies are rapidly reducing the cost of reading someone's personal DNA (all six billion letters of it). Within the next ten years, hospitals may present parents with their newborn's complete DNA code along with her footprints and APGAR score. In Genetic Twists of Fate, distinguished geneticists Stanley Fields and Mark Johnston help us make sense of the genetic revolution that is upon us. Fields and Johnston tell real life stories that hinge on the inheritance of one tiny change rather than another in an individual's DNA: a mother wrongly accused of poisoning her young son when the true killer was a genetic disorder; the screen siren who could no longer remember her lines because of Alzheimer's disease; and the president who was treated with rat poison to prevent another heart attack. In an engaging and accessible style, Fields and Johnston explain what our personal DNA code is, how a few differences in its long list of DNA letters makes each of us unique, and how that code influences our appearance, our behavior, and our risk for such common diseases as diabetes or cancer.

A Physician's Guide to the Management of Huntington's Disease

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Publisher :
ISBN 13 : 9780963773029
Total Pages : 85 pages
Book Rating : 4.7/5 (73 download)

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Book Synopsis A Physician's Guide to the Management of Huntington's Disease by : Adam Rosenblatt

Download or read book A Physician's Guide to the Management of Huntington's Disease written by Adam Rosenblatt and published by . This book was released on 1999-01-01 with total page 85 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Inside the O'Briens

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Publisher : Simon and Schuster
ISBN 13 : 1476717834
Total Pages : 368 pages
Book Rating : 4.4/5 (767 download)

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Book Synopsis Inside the O'Briens by : Lisa Genova

Download or read book Inside the O'Briens written by Lisa Genova and published by Simon and Schuster. This book was released on 2015-04-07 with total page 368 pages. Available in PDF, EPUB and Kindle. Book excerpt: A New York Times bestseller ▪ A Library Journal Best Books of 2015 Pick ▪ A St. Louis Post-Dispatch Best Books of 2015 Pick ▪A GoodReads Top Ten Fiction Book of 2015 ▪ A People Magazine Great Read From New York Times bestselling author and neuroscientist Lisa Genova comes a “heartbreaking…very human novel” (Matthew Thomas, author of We Are Not Ourselves) that does for Huntington’s disease what her debut novel Still Alice did for Alzheimer’s. Joe O’Brien is a forty-three-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s disease. Huntington’s is a lethal neurodegenerative disease with no treatment and no cure, and each of Joe’s four children has a 50 percent chance of inheriting their father’s disease. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. As Joe’s symptoms worsen and he’s eventually stripped of his badge and more, Joe struggles to maintain hope and a sense of purpose, while Katie and her siblings must find the courage to either live a life “at risk” or learn their fate. Praised for writing that “explores the resilience of the human spirit” (San Francisco Chronicle), Lisa Genova has once again delivered a novel as powerful and unforgettable as the human insights at its core.

The Woman Who Walked into the Sea

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Publisher : Yale University Press
ISBN 13 : 0300151772
Total Pages : 277 pages
Book Rating : 4.3/5 (1 download)

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Book Synopsis The Woman Who Walked into the Sea by : Alice Wexler

Download or read book The Woman Who Walked into the Sea written by Alice Wexler and published by Yale University Press. This book was released on 2008-09-30 with total page 277 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Am I My Genes?

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Publisher : Oxford University Press
ISBN 13 : 0190207671
Total Pages : 376 pages
Book Rating : 4.1/5 (92 download)

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Book Synopsis Am I My Genes? by : Robert L. Klitzman M.D.

Download or read book Am I My Genes? written by Robert L. Klitzman M.D. and published by Oxford University Press. This book was released on 2012-03-01 with total page 376 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results. Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes--often in the person's own words--how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries--whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow. Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years. "An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all." --Paula Zahn "Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." --Kay Redfield Jamison, author of An Unquiet Mind "An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk." --Thomas H. Murray, President and CEO, The Hastings Center

You'll Miss Me When I'm Gone

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Publisher : Simon and Schuster
ISBN 13 : 1481497758
Total Pages : 384 pages
Book Rating : 4.4/5 (814 download)

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Book Synopsis You'll Miss Me When I'm Gone by : Rachel Lynn Solomon

Download or read book You'll Miss Me When I'm Gone written by Rachel Lynn Solomon and published by Simon and Schuster. This book was released on 2018-01-02 with total page 384 pages. Available in PDF, EPUB and Kindle. Book excerpt: “Heartfelt, deeply moving.” —Buzzfeed “Dark and thought-provoking.” —Publishers Weekly “A stunning debut.” —VOYA A poignant, lyrical debut novel about twins who navigate first love, their Jewish identity, and shocking results from a genetic test that determines their fate—whether they inherited their mother’s Huntington’s disease. Eighteen-year-old twins Adina and Tovah have little in common besides their ambitious nature. Viola prodigy Adina yearns to become a soloist—and to convince her music teacher he wants her the way she wants him. Overachiever Tovah awaits her acceptance to Johns Hopkins, the first step on her path toward med school and a career as a surgeon. But one thing could wreck their carefully planned futures: a genetic test for Huntington’s, a rare degenerative disease that slowly steals control of the body and mind. It’s turned their Israeli mother into a near stranger and fractured the sisters’ own bond in ways they’ll never admit. While Tovah finds comfort in their Jewish religion, Adina rebels against its rules. When the results come in, one twin tests negative for Huntington’s. The other tests positive. These opposite outcomes push them farther apart as they wrestle with guilt, betrayal, and the unexpected thrill of first love. How can they repair their relationship, and is it even worth saving? From debut author Rachel Lynn Solomon comes a luminous, heartbreaking tale of life, death, and the fragile bond between sisters.

Learning to Live with Huntington's Disease

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Publisher : Jessica Kingsley Publishers
ISBN 13 : 1843104873
Total Pages : 178 pages
Book Rating : 4.8/5 (431 download)

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Book Synopsis Learning to Live with Huntington's Disease by : Sandy Sulaiman

Download or read book Learning to Live with Huntington's Disease written by Sandy Sulaiman and published by Jessica Kingsley Publishers. This book was released on 2007 with total page 178 pages. Available in PDF, EPUB and Kindle. Book excerpt: Huntington's Disease (HD), is a hereditary illness passed on via a defective gene. This book offers one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD. It also presents the struggles and strengths of the whole family when one member loses their future to a terminal illness.

On a High Wire, Without a Net!

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Publisher : Publishamerica Incorporated
ISBN 13 : 9781615829309
Total Pages : 142 pages
Book Rating : 4.8/5 (293 download)

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Book Synopsis On a High Wire, Without a Net! by : Susan E. Lawrence

Download or read book On a High Wire, Without a Net! written by Susan E. Lawrence and published by Publishamerica Incorporated. This book was released on 2009-10 with total page 142 pages. Available in PDF, EPUB and Kindle. Book excerpt: Susan Lawrence is one of 10 children in a family with more than 44 direct family members aat riska for Huntingtonas disease. In a routine doctoras visit she was informed that she was negative for HD. But, after seeing her genetic results, she realized that she was wrongly tested for Alzheimeras. If she had relied on a verbal consultation, Susan would not be aware that she is now living with a debilitating disease with no cure. Today, more than a quarter of a million Americans have HD or are aat riska of inheriting the disease from a parent. Family members have a 50/50 chance of having the disease when one or both parents have tested positive. Susan began writing therapeutically and now shares her experiences and knowledge of HD openly to help others find a way to keep hope in the forefront of an ongoing battle to find a cure.

Mapping Fate

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Publisher : Univ of California Press
ISBN 13 : 9780520207417
Total Pages : 354 pages
Book Rating : 4.2/5 (74 download)

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Book Synopsis Mapping Fate by : Alice Wexler

Download or read book Mapping Fate written by Alice Wexler and published by Univ of California Press. This book was released on 1996-12-30 with total page 354 pages. Available in PDF, EPUB and Kindle. Book excerpt: Wexler tells the story of a family at risk for Huntington's disease, a hereditary, incurable, fatal disorder from which her own mother died. This graceful and eloquent account goes beyond the specifics of the disease to explore the dynamics of family secrets, of living at risk, and the drama and limits of biomedical research. Photos.

Huntington's Disease

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Publisher :
ISBN 13 : 9780192629302
Total Pages : 164 pages
Book Rating : 4.6/5 (293 download)

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Book Synopsis Huntington's Disease by : Oliver Quarrell

Download or read book Huntington's Disease written by Oliver Quarrell and published by . This book was released on 1999 with total page 164 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.

Huntington Disease

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Publisher :
ISBN 13 :
Total Pages : 84 pages
Book Rating : 4.:/5 (81 download)

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Book Synopsis Huntington Disease by : Rachel B. Koff

Download or read book Huntington Disease written by Rachel B. Koff and published by . This book was released on 2012 with total page 84 pages. Available in PDF, EPUB and Kindle. Book excerpt: