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Huntington's Disease

Introduction 

Huntington's Disease (HD) is an inherited disease affecting areas in the brain which control, movement, thinking and emotion. It has a slow progression, and symptoms gradually worsen over time.

While there is no cure for HD at this time there are medications and therapies that may alleviate some of the more common symptoms of the disease.

One of the best ways to deal with anxiety or fear is to be informed. It is the aim of this website to provide information about HD and where you can go to access help and support.

Support Services

Huntington's WA provides a state-wide service to improve the quality of life for people with Huntington's disease, their carers and families through advocacy, support and education.  This includes support and services to people who may be at risk of developing Huntington's disease as well as those who are gene positive, gene negative, symptomatic or diagnosed, carers, family, friends and partners.

Huntington's WA  provides support through the following program areas:

  • Individual and Family services;
  • Education and information services;
  • Service Development and
  • Research

Individual and Family Services include:

  • Telephone Service and Home Visiting - The telephone service is often the first point of contact and this service provides timely access to on-going support and assistance through the Huntington's WA's specialist staff.  Huntington's WA is also able to offer specialist support through one-to-one visits by staff in the home or at other convenient locations, providing invaluable opportunities for emotional support, linking with other relevant agencies and services. Please feel free to contact the office on (08)6457 7599.
  • Referral - Specialised Advisors are available to provide referral to appropriate agencies for various services. These may include the Neurosciences Unit in Mt Claremont, Home and Community Care Programs and other allied health services.
  • Carers' Support Groups and Retreats - Huntington's WA's support groups and retreats provide opportunities for participants to develop relationships with others affeted by the disease; share information and experiences; and be given the opportunity to participate in social and leisure activities.There are a number of support groups available for Carers with meetings held monthly in the central metropolitan area, monthly in the North Metropolitan area and bi-annually in Rockingham. As the venue for the meetings varies from time to time please contact the office on (08) 6457 7599 for confirmation of the venue and the next meeting date. Carers Retreats are organised at least once a year. ALL ARE WELCOME!
  • Other Support Groups - Support staff are also responsible for facilitating a number of community support groups; these include
    • South West Support Group - this group meets in Bunbury on a quarterly basis. It is a mixed group that includes carers, members who have HD and gene positive members. It is organised and facilitated by the support staff.
    • The Travellers -  this group meets on a quarterly basis. Originally the GP (gene positive) group, the change in name was chosen by the group to   acknowledge the changes and transitions they would face over time as they travel their journey with Huntington's together. 
    • Youth Group - this group is for young people aged 8-18. The group meets once during each school holiday break, and a camp is organised once a     year. This group is aimed at supporting young people living with a family member with HD or being at risk of HD.
    • Day Centre Enrichment Program - the Day Centre operates each Wednesday from 9.30am to 1.30pm during school terms and is for those who are symptomatic and living in the community or low care residential facilities. A Getaway is also organised for those who are symptomatic but still independent in their care needs. These retreats are subsidised by the association.
  • Education and Information - Huntington's WA provides education and information services to individuals and families affected by Huntington's disease as well as working with health and community service professionals and residential services.  The services provided encompass workshops, seminars, information brochures and other resources, newsletters and social media activities.
  • Financial assistance - The purpose of financial support is to provide emergency relief to assist in maintaining basic standards of living. Financial assistance resources are limited and are currently supported by a grant from Lotterywest funds.  Qualifying criteria applies and there is an annual limit of $500.  For qualifying criteria or further information please contact the office.

  • Food supplements program Modified diets may require the addition of food supplements.  Huntington’s WA offers support to members of the community who require items such as Thickeners, fortified drinks and other specialised food products by subsidising the cost by up to 50%.  Each month an email is sent to Carer’s and other community members who wish to place an order.  Our two main suppliers are Surgical House and Nutricia however we are happy to look at options for purchase through other suppliers to cater for the needs of our members. If you would like to be included on the email list please contact the office.

  • Website - Recently Lotterywest provided a grant which enabled Huntington’s WA to update our website.  The website offers a range of resources with sections specifically dedicated to; People living with HD; Carers and family members; Young People; and Allied Health Professionals.  In additional you can find all of our newsletters, annual reports, information guides as well as links to other websites that provide a wealth of information about Huntington’s disease.  You will find our website at https://www.huntingtonswa.org.au/

  • Research - Huntington’s WA is committed to supporting initiatives that foster high quality research into HD including applied, clinical research optimising function, participation, emotional well-being and quality of life while the search continues to achieve the ultimate objective of finding a cure.

    In collaboration with Edith Cowan University and funded by Lotterywest, Huntington’s WA has supported the HEROs (Huntington’s Environmental Research Optimisation Scheme) program.  There has been two studies, firstly with participants who were symptomatic and the second trial with participants who had tested Gene Positive but were not yet symptomatic.  The full results of the second trial will be available by the end of the year, with initial results replicating those of the first trial, highlighting the beneficial effects of physical, mental and social stimulation for people with HD.

    Further details of this research as well as links to other reputable websites are available on the Huntington’s WA website.  For ongoing up to date research and general information you can follow us on Facebook or Twitter:

For more information please contact Huntington's WA: admin@huntingtonswa.org.au or by phoning 08 6457 7599

 

 

 

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