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Carers, Family & Friends

Carers are often partners or other family members, such as parents or siblings. The care they provide can vary from simply helping someone out on a regular basis with shopping, cooking or washing to providing support 24 hours a day, seven days a week. However, many carers who provide this care and support will not view themselves as a “carer”. First and foremost they will view themselves as a partner, parent, child or sibling.

Additionally, due to the hereditary nature of HD, carers may be looking after or supporting more than one member of the family at the same time. Due to the possibility of personality and behavioural changes in the cared for person and the long duration of the illness,  caring for someone affected by this disease can be particularly challenging and demanding – physically, emotionally and financially.

This information and advice is provided on various aspects of caring for a person with HD and aims to support carers who are looking after a family member affected by the disease.

WORDS: adapted from Huntington’s WA

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Resource Library




National Carers Week 2020

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

Isolation tips and support for young people and their families 

As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.
Access our Youth Connection counselling services.

Global Connections for Huntington’s NSW ACT

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

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?

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 Huntington Disease Service – Westmead Hospital University Clinic

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 Music and Social club

‘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.

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