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Huntington's DiseaseHuntington's Disease Awareness

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. Engagement in purposeful activities plays a key role in supporting functioning, health and well-being. The Day Centre Program is designed to provide participants with a balance of appropriate physical, mental and social stimulation aimed at maintaining a level of independence to support and prolong community living. 
  • A Getaway is also organised for those who are symptomatic but still independent in their care needs. These retreats are subsidised by the association.

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

Education and Information Services

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, website updates, information brochures and other resources, newsletter and social media activities. 

Service Development

Huntington's WA is part of an Interagency Network which meets quarterly in the metropolitan area as well as in the South West.  Members of the network include the Neurosciences Unit, Disabilty Services Commission, Brightwater and the Multiple Sclerosis Society of WA and Huntington's WA.  The Interagency Network meetings provide an opportunity to coordinate current service needs, consider professional development needs across the sector and discuss otpions for the tailoring of services to meet the need of individuals and families living with Huntington's disease.

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.  Lotterywest has provided funding for initiatives that have enabled Edith Cowan University to undertake research projects including  HEROs and HEROs 2. HEROs is the acronym for Huntington's Environmental Research Optimisation Scheme.  Conclusions from the initial study were that a multidisciplinary rehabilitation program can significantly impact the phenotypic expression of Huntington's disease, resulting in beneficial changes to motor function, cognition, body composition and strength.  The outcomes from this study have also been used by Huntington's WA to inform the development of our Day Centre Enrichment Program.

The full report on the HEROs research project is available from the Research tab on this website.

Please do not hesitate to contact the office for further information or for a chat about the support and services available. 

 

 

 

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