Awareness of Huntington's disease in Port Macquarie is vital

Back: Kim Frumar, Alysse O'Brien, Michelle O'Brien. Front: Ross Henderson, Julie Leto, Jenna Bamborough-Lahey
Back: Kim Frumar, Alysse O'Brien, Michelle O'Brien. Front: Ross Henderson, Julie Leto, Jenna Bamborough-Lahey

HUNTINGTON’S disease is a little known but debilitating disorder, and a leading organisation on the illness are taking step to ensure the Mid North Coast community is better educated.

September is Huntington’s awareness month, and Julie Leto, regional support social worker at Huntington’s NSW, is lobbying for a better educated society.

The disease, also known as Huntington's chorea, is an inherited disorder that results in death of brain cells. 

As the disease advances, uncoordinated, jerky body movements become more apparent. Physical abilities gradually worsen until coordinated movement becomes difficult and the person is unable to talk.

Symptoms usually begin between 30 and 50 years of age, but can start at any age. About 8% of cases start before the age of 20 years and typically present with symptoms more similar to Parkinson's disease.

HD is typically inherited from a person's parents, with 10 percent of cases due to a new mutation. 

The disease is caused by an autosomal dominant mutation in either of an individual's two copies of a gene called Huntingtin.

This means a child of an affected person typically has a 50 percent chance of inheriting the disease. 

Majestic Cinema’s Port Macquarie screened a special documentary as part of the awareness month.

Miss Leto said she wants people to be aware of the disease and how it impacts families.

“There are 600 people in NSW living with Huntington’s disease,” she said.

“Many people on the Mid North Coast and in Port Macquarie have it.

“People with Huntington’s often appear to be drug or alcohol affected. They have jerking movements and look unusual, so people look at them and assume the worst.

“It makes it very hard for those people and their family living in the community, so we really want to get people to know exactly what it is.”

A support group has formed in Port Macquarie, with plans for another on the south coast.

“I want to get as many support groups up and running as possible,” she said.

“Hopefully we can have a walk for hope event in Port Macquarie next year.

“My message to everyone in the Port Macquarie community is to be aware there are many people who live in the town who have the disease.

“If we can get feedback from the community, from people living with Huntington’s to participate in the group, then the better off we will be.”


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