Huntington’s Disease Association (Auckland)

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Huntington’s Disease Auckland provides specialised Huntington’s disease support in Northland for individuals, families and whānau, caregivers and health professionals.

The organisation provides ongoing guidance from diagnosis through to the later stages of the condition. Its team can help whānau understand Huntington’s disease, navigate the health system, plan for changing needs and connect with appropriate support services.

What is Huntington’s disease?

Huntington’s disease, also known as HD, is an inherited condition that progressively affects parts of the brain. It is caused by a change in the HTT gene on chromosome 4.

HD can affect a person’s movement, thinking, behaviour and emotional wellbeing. Symptoms most commonly begin during adulthood, although they can develop earlier or later in life. MedlinePlus Genetics

Symptoms of Huntington’s disease

The symptoms and progression of Huntington’s disease vary between people.

Symptoms may include:

• Involuntary movements
• Changes in balance or coordination
• Difficulty concentrating or making decisions
• Changes in memory and thinking
• Depression, irritability or other mood changes
• Difficulties with speech or swallowing
• Changes in behaviour or personality

Treatment and ongoing care

There is currently no cure for Huntington’s disease, but medication, therapy and supportive care can help manage symptoms and maintain quality of life.

Support may involve medical professionals, physiotherapists, occupational therapists, speech-language therapists, mental health professionals and community support services. Research into treatments that could slow or prevent the progression of HD is ongoing. US National Institute of Neurological Disorders and Stroke

Information following a diagnosis

Huntington’s Disease Auckland can provide information when an individual or whānau member is newly diagnosed.

The team continues working alongside families as circumstances and support needs change. It can explain symptoms and help people understand how Huntington’s disease may affect their individual family or whānau situation.

Navigating services and planning ahead

The team can help individuals and whānau to:

• Understand the health and disability support systems
• Identify services that may be needed now or in the future
• Access and evaluate available support
• Plan for changing care needs
• Communicate with the agencies involved in their care
• Develop more coordinated and effective care pathways

Education for whānau and professionals

Huntington’s Disease Auckland provides education and information for family and whānau members, caregivers and health professionals.

This can help the people involved in someone’s care better understand the condition, recognise changing needs and provide informed, coordinated support.

Connecting with other families

Opportunities may be available to meet or connect with other families and whānau affected by Huntington’s disease.

Connecting with others can provide understanding, shared experience and practical insight into living with or supporting someone with HD.

Quarterly newsletters containing information and updates are also available through the Huntington’s Disease Auckland website.