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Understanding Huntington's Disease & How the NDIS Can Help

10 July 2023

Reading Time: 5 minutes
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Huntington’s disease is a progressive neurological disorder that affects a person’s ability to control their physical movements, think clearly, and regulate their emotions. It is a hereditary condition that is degenerative, meaning it gets worse with time.

This incurable illness is also called Huntington’s chorea.

In this blog, we will explore the symptoms, causes, and treatment options for Huntington’s disease, as well as how the National Disability Insurance Scheme (NDIS) provides support for individuals living with this condition.

Table of Contents

Symptoms

The symptoms of Huntington’s disease can vary from person to person and may develop at different ages.

Common symptoms include:

  • Movement Challenges: Individuals with Huntington’s disease often experience uncontrolled movements known as ‘chorea’. These movements can be jerky, random, and involuntary, affecting various parts of the body. As the disease progresses, individuals may also experience difficulties with balance, coordination, and walking. The medical term for this phase is ‘Hypokinesia.’
  • Significant Cognitive Decline: Huntington’s disease can lead to cognitive impairments, including difficulties with concentration, problem-solving, memory loss, and impaired judgment. People with this condition may also experience changes in their ability to plan and organise very basic tasks.
  • Emotional and Behavioural Changes: Individuals with Huntington’s disease may exhibit changes in their emotions and behaviour. This can include depression, anxiety, irritability, mood swings, social withdrawal, and even aggression.

These changes can have a significant impact on their relationships and overall quality of life.

Causes

Huntington’s disease is caused by a mutation in the huntingtin gene (or HTT). This gene provides instructions for producing a protein called huntingtin, which plays a vital role in the normal functioning of brain cells. The disease is named after Dr. George Huntington; he was the first to document it as an independent disorder.

In people with Huntington’s disease, an abnormal version of the huntingtin protein is produced, leading to the gradual destruction of specific brain cells, especially those in the basal ganglia and cerebral cortex.

The genetic mutation responsible for Huntington’s disease is hereditary, which means it can be passed down from parent to child. If a parent has the mutated gene, each of their children has a 50% chance of inheriting the disease. The age of onset can vary widely among affected individuals.

Treatment

Currently, there is no cure for Huntington’s disease, but there are treatment options available to manage the symptoms and improve the quality of life.

Approaches may include:

  • Medications: Various medications can help control the movement problems, manage psychiatric symptoms such as depression and anxiety, and improve cognitive functions. Tetrabenazine, for example, can help reduce chorea and other involuntary movements. Cognitive enhancers may also be used to address cognitive decline. It is important to work closely with healthcare professionals to find the most effective medication regimen for individual needs.
  • Physical and Occupational Therapy: Physical and occupational therapy can help individuals with Huntington’s disease maintain their mobility, strength, and independence. These therapies can include exercises to improve balance and coordination, as well as assistive devices and adaptive techniques to support daily activities.
  • Speech and Swallowing Therapy: As Huntington’s disease progresses, individuals may experience difficulties with speech and swallowing- a condition called dysphagia. Speech therapy can help improve speech clarity and communication, while swallowing therapy can assist with maintaining safe swallowing and preventing dangerous complications such as aspiration pneumonia. These therapies are important for maintaining quality of life and overall well-being.
  • Supportive Care: People with Huntington’s disease require ongoing support and care to manage their symptoms. This may involve a multidisciplinary approach, including the involvement of neurologists, psychologists, social workers, and other healthcare professionals.

Regular monitoring and follow-up visits are crucial to adjust treatment plans as the disease progresses and to provide support to both the individual and their caregivers.

The NDIS and Support for Huntington's Disease

The National Disability Insurance Scheme (NDIS) provides support and services to individuals with Huntington’s disease. Those afflicted can access a range of services tailored to their specific needs.

One way the NDIS assists people with Huntington’s disease is through the provision of Specialist Disability Accommodation (SDA). SDA offers housing solutions for individuals with high support needs, including those with severe physical or cognitive impairments. SDA aims to create a safe and accessible living environment that promotes independence and quality of life. other accommodation options might also be suitable such as short term accommodation (STA) and medium term accommodation (MTA).

Supported Independent Living, or SIL, is also offered. SIL helps with daily living tasks and helps individuals develop the skills needed to live independently. SIL can involve support workers who provide ongoing assistance with personal care, household tasks, and community engagement.

The NDIS may also provide funding for complex care support depending on the participant’s condition. These specialised services offer tailored care and support for those with high medical and care requirements.

The NDIS also utilises assistive technology to support individuals with Huntington’s disease. This includes communication aids, mobility devices, home modifications, personal safety devices, and assistive apps/software. These tools enhance independence and quality of life for those affected by the disease. The NDIS works closely with participants to assess their needs and provide appropriate assistive technology solutions.

If you or someone you know is affected by Huntington’s disease and are in need of NDIS support in Melbourne, don’t hesitate to contact us right away. We are a registered NDIS service provider dedicated to providing high-quality accommodation and specialist support services.

Conclusion

Huntington’s disease is a complex and progressive neurological condition that significantly impacts a person’s physical, cognitive, and emotional well-being. While there is no cure for the disease, various treatment options are available to manage symptoms and improve the quality of life for individuals with Huntington’s disease.

Additionally, the NDIS provides crucial support and services to assist individuals with Huntington’s disease. The non-profit Huntington’s Disease Network of Australia (HDNA) is working on newer therapies. It’s funded by the Australian National Health and Medical Research Council.

Combining medical interventions and comprehensive support systems help enhance the lives of individuals with Huntington’s disease and their families.

Frequently Asked Questions

Although Huntington’s disease typically manifests in adulthood, there is a less common form called Juvenile Huntington’s disease (or Juvenile HD). It affects children and adolescents, people who haven’t yet turned 20. Juvenile Huntington’s has its own distinct symptoms and progression.

Genetic testing can identify whether an individual carries the genetic mutation responsible for Huntington’s disease. However, the test cannot predict the age of onset or the specific symptoms an individual will experience.

The life expectancy of individuals with Huntington’s disease can vary significantly. It is influenced by factors such as the age at which symptoms begin and the overall management of the disease.

On average, individuals with Huntington’s disease live for approximately 15 to 20 years after the onset of symptoms. However, it is important to note that this is an average and individual cases can vary.

Research is continuously advancing our understanding of the disease and its impact on life expectancy. Ongoing studies aim to determine the extent of variation in life expectancy and the factors that contribute to it, including the causes of death.

The NDIS offers support and services tailored to the specific needs of individuals with Huntington’s disease.

This includes access to housing options like SDA, STA, complex care, and assistance with daily living tasks through Supported Independent Living (SIL). The NDIS also provides funding for assistive technology, respite care, and therapies that enhance independence and overall well-being.

Registered NDIS service provider delivering high quality support services across Melbourne.

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