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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

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Medical ID card

Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more

Carer Emergency care plan

The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more

Dancing at the Vatican documentary

An inspirational documentary telling the story of hope for Huntington's Disease families. Showing that if enough people who refuse to give in, come together, anything is possible.

Huntington Study Group education

HSG and its members offer free educational opportunities to providers so they can offer quality care to their patients and families impacted by HD.

Clinical trials: your questions answered

This leaflet has been produced by Roche, in consultation with Huntington’s disease organisations, to provide basic information on clinical trials of medicines.

Carer self-care and wellbeing workshops

Replay the free online webinars and self-care and wellbeing workshops for carers conducted during Carers Week 2020.

Featured Support Groups and Services

Online Carers Support Group

Calendar of events
This is a facilitated group for people who are caring for a partner, family member or friend with HD.
Places are limited to 8 therefore RSVPs are essential.

Huntington’s NDIS Support Coordination and Specialist 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

Unfortunately this program has been cancelled due to the COVID-19 pandemic. We will revisit the program when over 80% of the NSW/ACT population are vaccinated against COVID-19.

‘My Voice’ Art club

Unfortunately this program has been cancelled due to the COVID-19 pandemic. We will revisit the program when over 80% of the NSW/ACT population are vaccinated against COVID-19.