I've read this book and it IS fantastic!
The following are excerpts from the book "HD and Me: A Guide For
Young People" written by Alison Gray that was published August
2000 by the HD Association (Wellington), Inc. (see HD links).
As the book says, the "quotes from young people" appear throughout
this book and speak far louder than any text." Below are just two of
the many quotes from the young people in this book.
Many of you reading the below may be feeling the same way. Why not
share your feelings by putting them on the "Message Forum" to share
with other young people?
HD And Me
HD to me means a lot of things.
It means pain and suffering for something that a "normal"
17 year-old shouldn't even have to know about. I hurt
because I watch my father whom I love and care about,
suffer from an illness that he didn't ask for.
HD is terrifying. It scares me because I don't want to be
'different". I am an independent person and the last thing
I want is people looking after me. I also see it as terrifying
because it's the thing I hate and fear the most in my life.
It is the thing that I have to confront every day and that
On the other hand, HD means strength and hope. Because
of this thing I have to face and cope with, because of the
pain and suffering, I am a stronger, more courageous person.
I have that to be thankful for.
I find hope inside my strength because it makes me see
the positive side of this condition. I also find hope in the
new technology as it shows me that if I do find myself
with HD it might not be as bad as it seems today.
What We Don't Like About HD
~ From Young People In HD Families:
Thinking why us, why not someone else?
Worrying about what other people think.
Watching loved ones deteriorate.
Feeling you may be next.
Not knowing how long you have got to live.
Thinking you haven't done a good job.
Having to explain it to somebody else.
Thinking no one understands.
Having to carry on when somebody stares.
Not knowing what's going on.
Having secrets from family members and friends.
Why does she say so many horrible hurtful things?
The book has 68 pages. Following is the index:
What This Book Is About
Some Facts About HD
Why is it called HD
How Do people get HD
What does HD do
What the scientist are doing-the hope page!
HD In Your Family
Why is HD so scary
Tools To Help You Cope
An ABC to help you cope with HD
Some Ways of managing HD behavior
What about predictive testing?
An ending - but not the end
Where to go for help (lists HD associations all over)
The book has quotes, poems and stories from those whose ages range
from 8 to 22 . This is a book for young people who live in a family
where someone has Huntington's disease. It is also for young people
who want to know more about the disease and how it may affect their
Ordering The HD & Me Guide book:
I am working on getting copies of this book to offer for sale in the USA.
In the interim, this book from Huntingtons Disease New Zealand
Association is for sale through the HD Association-UK at: