Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community (Lemonade Life Series)
£13.10
Lisa Genova, New York Times bestselling author of Inside the O’Briens
We often remark in life that “nobody knows what goes on behind closed doors,” but without first-hand stories like these, I don’t think we really understand the extent of that sentiment. I implore anyone to read HD Heroes.
George Rainsford, actor and patron for the Huntington’s Disease Association
Essential reading for anyone affected by Huntington’s, whether carrier, caregiver, partner, or friend. Profoundly moving accounts by those with or at risk of inheriting this cruel disease.
Helen Pidd, author and North of England editor at the Guardian.
I was truly brought to tears by the authors’ courage and fortitude in finding ways to deal with the hardships and create empowerment from the difficult road HD represents—it is motivational and inspirational for all of us to read.
Leslie M. Thompson, HD researcher
HD Heroes invites the reader to become part of the HD team by having a better understanding of the impact of the disease on the real lives of those living it. The contributors here have shared their lives in a brave and open manner.
Mark Guttman MD, FRCPC neurologist and clinical researcher in HD
HD Heroes is a moving, powerful, and remarkable collection of personal stories from people affected by HD in some way. Their stories must be read by anyone interested in learning more about what makes our HD family community so amazing.
Professor Sarah Tabrizi, HD doctor and scientist
Huntington’s disease has been steeped in secrecy and fear for generations, leaving people in the community without a voice. This book changes that. Twenty-six people from nine countries bravely share their personal stories about living in the shadows of this disease. By doing so they are saying: Here I am. I will not be kept silent.
From a scientist who switched from cancer research to studying Huntington’s after finding out her mother had tested positive for the disease, to a young man whose biggest fear was testing gene negative and not inheriting the disease, to a woman who grew up in survival mode, unable to express her grief. We learn about the ways their lives are better off because of the hardships they have faced. By sharing these intimate parts of their lives, they are taking away the fear and stigma of living with HD in their families, and for that reason alone they are truly all HD heroes.
And when you read these stories, you will see that YOU are an HD hero too.
This book shares first-person stories from people who have tested gene positive, who have tested gene negative, or who have decided not to test, as well as stories from young carers, families living with juvenile HD, scientists, HD advocates, and more.
50% of the profits from the sale of this book will be donated to HDYO (Huntington’s Disease Youth Organization).
With stories from Charlie Burke, Emma Burnip, Ashley Clarke, Andrea Florian, Scarlett J. Florence, Lindsay Groot, Josh Halliday, Emma Harris, Rob Haselberg, Jenny Louise Johnson, Brandon Khoury, Sarah Khoury, Shelby Lentz, Domonique Claire Link, Dr. Tamara Maiuri, Joshua Marshall, Judy Melville, Paramjit Oberoi, Erin Paterson, Erin Pryce, Archana Ravada, Mackenzie Remillard, Gabrielle Russo, Joanne Somerville, Mandy Urbach, and Emma Wajswasser
Special contributions from Erika Boulavsky, Jenna Heilman (HDYO), Charles Sabine, and Dr. Malvindar Singh-Bains
Read more
Additional information
| Publisher | Lemonade Press (16 Feb. 2023) |
|---|---|
| Language | English |
| Paperback | 267 pages |
| ISBN-10 | 1777917921 |
| ISBN-13 | 978-1777917920 |
| Dimensions | 15.24 x 1.55 x 22.86 cm |
by Colin
As someone who’s mother and brother had Huntington’s Disease (HD), I found the personal stories written in this book to be very moving, informative and honest.
It contains 25 different authors telling their story how HD has affected them.
Also useful are the chapter chats at the end of the book giving suggestions about each story on how to start discussions around this difficult subject.
It is a must read for anyone wanting to find out more about HD.
by Amazon Customer
A very emotional read, but worth it. These amazing people have literally said it all.
I highly recommend this book to carers & families, but most of all I want professionals to read these stories. They need to understand what it’s really like, not the sugar coated version.
by Ashley clarke
I love this book, one of my favourite sections at the back are the questions, promoting you to thunk about each authors story. I think this have a huge impact in the HD community as there are so many topics and personal stories shared.
by David Purdom Amazon customer
I have recently read Huntington’s Disease Heroes.
Chapter 22 by Archana Ravada is a truly extraordinary and vivid account of her life and the physical and emotional impact of this shocking disease.
Heartbreaking, so sad, tear provoking, incredible courage and bravery but also astonishingly optimism, achievements and solutions to negate some of the terrible impacts of the disease through meditation and fitness plus so much selflessness to help others.
I am ashamed that I new nothing of the details of this disease until now but the book has given me insight and awareness and motivated me to try to help.
I believe that anyone who reads Chapter 22, and indeed all chapters will benefit. Those people, family and friends sadly directly affected by HD, of course, and those with any illness or trauma or depression, but also those who are happy or unhappy in their lives because it provides a thought provoking perspective on life and what can still be achieved in the most harsh and ‘impossible’ circumstances.
As many readers have said it is an inspirational book but so much more.
Thank you so much to all the contributors for their honesty and for sharing their most personal moments to help others and to the many people who must have worked so hard to make the book possible.
by maisymoo
The brave and inspiring stories shared by the contributors of this book articulate so perfectly the complexity of HD and the issues faced by the HD community. It is so difficult to express to people on the outside how it feels to have your life impacted by HD and this book helped me to feel a little less alone. Despite its often difficult and triggering content it manages to be uplifting and inspiring and helps make the future feel a little more positive. Everyone should read this book, whether affected by HD or not as it is an excellent example of overcoming difficulties you think are impossible to overcome.
by Jason Garrett
This book will help so many. I only wish I had had such a book when I got diagnosed ten years ago. It has been written in such a beautiful and honouring way to those in the HD community. Most importantly I hope it will bring much needed awareness to those who have yet to hear about HD.