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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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Resource Library

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Dancing at the Vatican documentary

Dancing at the Vatican is an inspirational documentary telling the story of a seemingly impossible journey made by families bound by the same devastating, genetically inherited disease, Huntington's. The film captures this pivotal moment of hope for Huntington's Disease families in a film that will lift spirits after the ravages of 2020; 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.

HD News Spring 2020

Read our HD News Spring 2020 edition.

National Carers Week 2020

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

A Caregiver’s Handbook for Advanced-Stage Huntington Disease – Pollard, J. (ed.) 1999

The aim of this book is to familiarise carers with Huntington's disease, so that they can recognise its symptoms and know what to expect as it progresses.
It also includes general principles of care and tips that other carers have found useful.

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.