1800 244 735

Helpline (02) 9874 9777

People Living with HD

It is important to know that a diagnosis of Huntington’s disease (HD) does not mean reduced quality of life. Living at risk, gene positive or with symptoms may affect some aspects of your life, but many people find great joy in spending time with loved ones, and focusing on each day as it comes. Don’t feel afraid of reaching out for support from loved ones and health professionals if you feel it may help you.

HD affects three key areas: cognitive function, physicality and emotions. The order in which these may be affected is different for everyone, although many people find their cognitive function is the first to be affected. 

Although many symptoms are common, it is important to know every person’s experience with HD is different, which leads to different requirements for each individual. There are, however, some common patterns that can help you to understand the general progression of the disease.

If you have been diagnosed with HD, the information below will help you understand the disease in more detail.

WORDS: adapted from Huntington’s QLD

Share on facebook
Share on twitter
Share on pinterest
Share on email

Resource Library

AUDIENCE

TOPICS

RESULTS FILTERED BY:

HD News Spring 2020

Read our HD News Spring 2020 edition.

Global Connections for Huntington’s NSW ACT

WORDS LEWIS KAPLAN
I had the privilege of attending the EHA conference in Bucharest, Romania in October 2019.
Here's a few stand-out presentations and posters and Q&A with John Eden, CEO of the Scottish Huntington’s Association.

Coping well and finding resilience

WORDS AMY HALE
Dealing with life’s challenges as a young person can be difficult. School, work, relationships, friendships and family usually provide more than enough to cope with, put the extra challenges HD brings on top of all of this and it’s no wonder kids and young people affected by HD have a much harder path to navigate.

Travel Assistance

Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) is a NSW Government scheme that provides financial assistance towards travel and accommodation costs if a patient needs to travel long distances for health or medical treatment that is not available locally.

NDIS assisted technology and home modifications

What does this mean and what should I expect?

Insurance Breakthrough

Moratorium on Genetic Tests in Life Insurance came into effect in Australia from 1 July 2019 and will end on 30 June 2024.

Featured Support Groups and Services

Huntington’s NDIS Support Coordination

We understand the progressive neurodegenerative nature of Huntington’s disease and the effects it can have on a person’s day-to-day life and the impacts it has on their carers. The support coordinators will work with you at your pace to remove some of your daily stress by coordinating your supports. We are here to empower you to live a quality life with dignity and autonomy. We know that people who are experiencing symptoms of Huntington’s can lose capacity to direct their own life.

Huntington Disease Service – Westmead Hospital University Clinic

GP/Specialist referral required for this service. This service provides regular Medical review by Huntington disease specialist Neurologists for anyone with Huntington disease, at all stages of the disease. It is also available for those at risk of inheriting Huntington’s disease or undergoing testing for Huntington disease. The Social Workers provide support and advice for social ... Read more

Music and Social club

The music therapy approach chosen is resources orientated focusing on a person’s strengths, followed by some hardcore UNO. This music and social club is for those in the earlier stages and independent with all activities of daily living. The club meets fortnightly on a Tuesday between 10.00 AM and 12.00 PM at Elsie Court Cottage, ... Read more

‘My Voice’ Art club

The philosophy of this art program is phenomenological in nature; promoting the development of self-awareness. The art experience allows a creative response which is unique to the person participating. This art club is for those in the earlier stages and independent with all activities of daily living.

Central Coast Carer Support Group

Calendar of events
This is a self-managed group for carers of a person living with HD in the Central Coast area.
This group meets monthly.
Meetings have been posted due to the COVID pandemic.
Come back regularly to check for updates.

Welcome to our new website!

Please bear with us while we iron out the last minute wrinkles! If you have any feedback about our new site, please fill out the form below.