New hope for Australians with Huntington’s disease

Key points:

• New evidence suggests the benefit of having a high-fibre diet for people with Huntington’s disease

• The onset of Huntington’s disease can vary but is typically between the ages of 30 – 50 years of age

• At times, the best option for a person with Huntington’s disease may be to move into an aged care home

In a recent study, researchers have found evidence that having a high-fibre diet has positive effects on Huntington’s disease. Researchers at the Florey Institute of Neuroscience and Mental Health have conducted numerous studies on Huntington’s disease. 

While a clinical study is yet to be undertaken on humans by Florey, relating to high-fibre diets, the lead researcher in this trial, Dr Carolina Gubert suggested that these results corroborate previous findings:

“The gut microbiome in our mouse model of Huntington’s, carrying the human disease gene mutation, responded differently to the high fibre intake compared to the non-Huntington’s mice. This is consistent with our previous discovery that the gut microbiome is altered in Huntington’s disease,” said Dr Carolina Gurbert.

Around 2,100 Australians had Huntington’s disease in 2020, however, this actual number may be higher due to the strong genetic link; some people may not be aware if their symptoms are not yet causing major issues.

According to the National Health Service in 2021, the onset of Huntington’s disease can vary from 30 – 50 years, but could occur later in some cases. Juvenile Huntington’s disease can occur in childhood although it’s less common.

Symptoms of Huntington’s disease can include

• physical changes, e.g. stiffness, reduced fine motor coordination;
• cognitive changes, e.g. reduced short-term memory and impaired thinking;
• emotional changes, e.g. impulsivity and loss of empathy.

Unfortunately, there is no cure or treatment as of yet, so it’s important to have access to appropriate services and medical care that can increase quality of life. Depending on a person’s specific needs, speech therapy, occupational therapy, and physiotherapy may be beneficial.

Although Huntington’s disease is progressive and symptoms worsen over time, thinking about an aged care home for someone with the condition may be confusing because they usually cater to people over 65 years of age. 

However, such arrangements may be required for adults who have degenerative neurological illnesses, such as Huntington’s disease, even if they have not yet reached the age that is typically seen in aged care homes. 

According to a document released by the Australian Huntington’s Disease Association in 2015, three in four Australians with Huntington’s disease are left with aged care homes being their only option for appropriate care. This is because family members may not be able to provide the medical care required as the disease progresses. However, many of these people will be younger than the typical threshold age of 65 which is often required to reside in an aged care facility. 

When living in an aged care home, residents can receive assistance for all aspects of personal care, including taking a shower or bath, getting dressed and going to the toilet. 

This further extends to getting help with managing one’s daily medications and ensuring access to communication tools such as augmented and alternative communication aids or mobility aids. The staff in nursing homes will help with all of this and more.

While the study results demonstrate clear progress in developing treatment for Huntington’s disease, people with the condition will greatly benefit when more research is conducted in the field. 

In the meantime, helping to improve one’s quality of life is of utmost importance and to ensure that people with Huntington’s disease get the care they deserve. 

What are your thoughts on the new high-fibre diet for people with Huntington’s disease?

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