What HD Means to Me
from group discussions at Camp 2005

Changes in the future for person, family, at risk people and care-givers
Change of life
Person dying with HD
Scary
Coping and getting on with life
People need to be looked after
Wanting to help person with HD
Family
Loss
Learning
Explaining to other about HD
Pain – finding out others (siblings) may have HD – who will look after them?
Who’s responsibility is it to tell others – family, friends, fianceé about HD?
Wish it wasn’t in our family – don’t want others to have it
Friendship
Sadness
Giving/sharing knowledge
Helping to make people stronger
Have trouble concentrating at school because HD always on my mind
Can’t not be affected – affects everyone
Having to explain what HD is – hard to explain
People want HD in a box – easily explained
Frustration – so far reaching
Ongoing learning experience
People assume – make stupid assumptions
Exasperation
Patience
Courage
Understanding
Confused
Stressed
Financial stress
People judging – misjudged
ANGER
Loss of mobility
Loss bit by bit
Confined – trapped in a body that doesn’t work the way you want it to
Hope
Fate – it is meant to be – the inevitable
Hereditary disease – passed down in family
It is not the person’s fault, it is HD’s
Difficult when people don’t accept diagnosis of HD.  Makes it harder on family and friends
Due to grief not wanting to accept it as it hurts
Guessing game   - don’t know what is going to happen next
Loss of independence
Restrictions