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Download Learning to Live with Huntington's Disease: One Family's Story eBook

by Danny Dourado,Phil Dourado,Wendy Dant,Bromley Sulaiman,Chantel Sulaiman,Sandy Sulaiman

Download Learning to Live with Huntington's Disease: One Family's Story eBook
ISBN:
1843104873
Author:
Danny Dourado,Phil Dourado,Wendy Dant,Bromley Sulaiman,Chantel Sulaiman,Sandy Sulaiman
Category:
Medicine & Health Sciences
Language:
English
Publisher:
Jessica Kingsley Publishers; 1 edition (May 15, 2007)
Pages:
176 pages
EPUB book:
1613 kb
FB2 book:
1839 kb
DJVU:
1143 kb
Other formats
mbr mobi lrf rtf
Rating:
4.6
Votes:
199


Sandy Sulaiman (Author), Danny Dourado (Contributor), Phil Dourado (Contributor), Wendy Dant (Contributor) .

Sandy Sulaiman (Author), Danny Dourado (Contributor), Phil Dourado (Contributor), Wendy Dant (Contributor), Bromley Sulaiman (Contributor), Chantel Sulaiman (Contributor) & 3 more.

by Danny Dourado, Phil Dourado, Wendy Dant, Bromley Sulaiman . Books related to Learning to Live with Huntington's Disease.

by Danny Dourado, Phil Dourado, Wendy Dant, Bromley Sulaiman, Chantel Sulaiman, Sandy Sulaiman. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. Learning to Live with Huntington's Disease is one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD. This book presents the struggles and strengths of the whole family when one member loses their future to a terminal illness.

There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure

There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. Product Identifiers. Sandy Sulaiman has been a journalist for 20 years, with articles published in most UK national newspapers, as well as specialist publications and women's magazines. She was diagnosed with Huntington's disease seven years ago. Sandy lives near Banbury, Oxfordshire, UK. Country of Publication.

Wendy Dant is the author of Learning to Live with Huntington's . Discover new books on Goodreads Sandy Sulaiman, Wendy Dant (Contributor). Danny Dourado (Contributor).

Discover new books on Goodreads. See if your friends have read any of Wendy Dant's books. Wendy Dant’s Followers. None yet. Wendy Dant. Sandy Sulaiman, Wendy Dant (Contributor). Want to Read savin. ant to Read.

The Writings of Danny Dourado. Who is this? Portfolio. Learning to Live with Huntington’s Disease. What is this? Learning to Live with Huntington’s Disease: One Family’s Story is a book that is very dear to me. This is a moving true story of how people can find the inner strength to rise above it when their world is turned upside down. Sir Richard Branson. My mother used to be a fashion journalist and it was always her dream to be published in a book, but unfortunately she developed a very unpleasant illness called Huntington’s Disease that at first seemed to crush those ideas.

Author Sandy Sulaiman, who has Huntington's . Huntington's is a horrible disease, but the family are so upbeat they're bound to inspire others. The book is littered with humour in adversity.

Her daughter-in-law describes the family as 'journalists or natural born writers'. Each family member contributed a chapter describing how Huntington's affects their life, and the book's power comes from the clarity, emotion and frankness of their writing. It's like reading an issue of Heat or SHE magazine.

The candid stories offer distinct perspectives on living from many vantage points . product description page.

The candid stories offer distinct perspectives on living from many vantage points, be it the person with a terminal illness, the "lucky" survivor, the parent, the spouse, or the child. This family inspires us all to examine our "broken edges" as a means to healing, hope and strength. The prose depicts the clinical phenotype of Huntington's disease with a candor reminiscent of Oliver Saks' neurological teachings. Learning to Live with Huntington's Disease - by Sandy Sulaiman (Paperback).

Related books: Learning to Live with Huntington's Disease: One .

Related books: Learning to Live with Huntington's Disease: One Family's Story by Contribution by Phil Dourado, Contribution by Wendy Dant, Contribution by Danny Dourado, Contribution by Bromley Sandy Sulaiman. newSpecify the genre of the book on their own. Author: Contribution by Phil Dourado, Contribution by Wendy Dant, Contribution by Danny Dourado, Contribution by Bromley Sandy Sulaiman. Help us to make General-Ebooks better! Genres.

Huntington's Disease (HD) is a hereditary illness passed on via a defective gene. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. Learning to Live with Huntington's Disease is one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD.

This book presents the struggles and strengths of the whole family when one member loses their future to a terminal illness. Told by the sufferer and other significant family members, the individuals describe the burden of watching yourself and others for symptoms of HD, including involuntary movements, depression, clumsiness, weight loss, slurred speech and sometimes violent tendencies. The family recounts the challenge to remain united and describes how they approached issues such as whether or not to be tested for HD, how much information to disclose to relatives, whether to have children or not and guilt if one sibling inherits the illness and one does not.

Both honest and positive, the author stresses the importance of re-inventing yourself and your present, prioritising relationships and retaining a sense of humour.

  • Taulkree
This short book is a very poignant insight into how HD affects every member of a family. Most of the family members are not writers by profession, but you can't criticize them for speaking from their hearts. It's a devastating story to tell, and we should all be grateful that people like the Sulaimans are willing to share it. But in the end, it's important to know that this book is not a medical text and describes but one family's struggle. If you are looking for a more informative, well-rounded explanation, or if you want to know the cold, hard facts (such as physical symptoms, disease progression, prognosis, etc.), then this book is not a great starting point.

As I have said in other reviews, the body of knowledge on HD is nearly nonexistent. Oliver Quarrell's book, Huntington's Disease (The Facts), is probably the most concise introduction, and the few books authored by and about the Wexler family offer an interesting historical and personal perspective (Mapping Fate: A Memoir of Family, Risk, and Genetic Research;The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease; and Gene Hunter: The Story of Neuropsychologist Nancy Wexler (Women's Adventures in Science), which, although written for young adults, is advanced enough for grown-up readers as well). And of course, the consummate resource for the latest medical information on HD remains the Huntington's Disease Lighthouse, an indispensable website to which Amazon refuses to let me post a link.
  • Thetahuginn
Living at risk for HD can leave you feeling scared and alone. You are put on a roller coaster of emotions from one day to the next. Each family member takes on a different role, which also changes as you get older, test for yourself, or become the care taker. It was refreshing to hear and relate to each members experience in this family. I felt like I was reading about my personal experience growing up with an HD parent. I related to my father taking care of my mother; I was able to pinpoint when my mothers psychological symptoms kicked in, the fear of testing, and the guilt of not carrying the gene when I have siblings that have yet to be tested. This book is a true insight into the lives of those suffering from this genetic disease. Very well written.
  • Perius
I am like Sandy; HD positive except my symptoms have not begun yet. I soaked up every word she wrote. She is funny, real and left me wanting to read more of her writings. The book is written by her and her family. Each person has shared insight into the relationship they have with Sandy and the affects of the (mostly rediculous and unfair) Huntington's Disease. It contains a wide range of perspective from caregivers' insight and resources for strength to her at-risk childern speaking frankly about their decision to have genetic testing done (or not). Her HD negative sister shares her experiences as well.
Favorites about the book:
Her husband speaks about finding "faith" not hope. It reasonated and I will keep this with me.
Wish list for the book: Sandy, more Sandy! I wanted to read more of HER writings. (yes Sandy you are GOOD!)

I keep this book with me (or close by). When I'm feeling strong I reread some parts. When I'm not so strong and need a lift, I re-read her husbands section on finding faith that everything will be alright.

A book written by real people sharing such personal details about their lives.

Thank you Sandy and your family!
  • Dakora
i did not like this book, that is why I choose a 2 for it. I would not suggest anyone else buy it either.
  • Doomredeemer
Great book. Handles subject with humor.
  • Rasmus
I loved reading this book. My father has HD and I can only guess and assume how he's really feeling. This has given me a deeper insight into my Dad's real life circumstances. Thank you so much Sandy.
  • Gavinranara
My mother has huntingtons before i read this book i had nothing to compare my life too i didnt know if the stages that my mother was going through were normal or not but after reading this book i finally have someone to relate too!
So many people have written rave reviews to the Sulaiman's and the publisher on this book, I was surprised not to see any posted under Amazon's book review!

Huntington's Disease has been so intricately entwined into the fabric of my life since the early 1980's when my only child, Kelly, was diagnosed with the Juvenile form of this devastating disease. Throughout Kelly's life, and since her death at age 30 to complications of JHD in 1998, I have been deeply involved in trying to help families living with Huntington's Disease by providing resources and support where I can. "Learning to Live With Huntington's Disease: One Family's Story" is one of the best non-fictional books on HD to be written since Carman Leal's "Faces of Huntington's" was published in 1998! Whether you are a professional involved in providing support to HD families, a person diagnosed with HD, a young person growing up in an HD family, a person at-risk for inheriting the disease, a friend or a relative of a family living with HD, or a spouse thrown into the role of a "caregiver" in an HD family, each chapter in this book not only will touch your heart but will provide you with insight on how this disease affects every single aspect of the life of anyone who is living with HD!

I highly recommend reading "Learning to Live With Huntington's Disease: One Family's Story"!

Jean E. Miller
HD Patient Outreach
HDSA HD CoE at USF~Tampa, FL.
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