Huntington's disease: with 15 sufferers in her family, Rachael has spent her life spreading awareness

"My mum had Huntington's disease, and my brother has it. Each child with an affected parent has a 50 per cent chance of inheriting it," she said.

When one tests positive for the Huntington's disease (HD) gene, nerve cells in the brain break down leading to abnormal changes. People with HD can no longer control their body and mind. They experience writhing, muscle spasms, difficulty with talking, swallowing, thinking and communicating. Depression is also among the many effects of this neurodegeneration.

"It's a very traumatic disease. You really wouldn't wish it on your worst enemy," Ms Brooking said.

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At the age of 13, Ms Brooking became her mother's carer. She also looked after her brother. None of her friends at school knew what was going at home. She herself did not have answers until she turned 18 when her mother tested positive to the HD gene.

"It was a lot of pressure. I was working two jobs very young, going to school, [doing] my Higher School Certificate and my piano exams. I was also getting my brother ready [for school], and sorting him out," she said.

Ms Brooking still works two jobs; she is a piano teacher and the executive officer for HD Awareness Orange.

Since May is Huntington's Disease Awareness Month, Ms Brooking has spent $3000 to put awareness signage on three buses in Orange, Dubbo, and Bathurst.

"Finding care for people with Huntington's is extremely difficult. There are no specialist services this side of the Blue Mountains," she said.

Ms Brooking said there are 30 families in the Central West affected with Huntington's disease. She said the charity Huntington's NSW ACT supports 700 families in New South Wales alone.

Overall, about seven in 100,000 Australians test positive to the HD gene. However, this statistic fools many into overlooking the gravity of the hereditary brain disease.

According to Ms Brooking, the symptoms and effects of HD are similar to motor neurone disease, but the awareness of it is not.

"Let's say you've got 10 people with motor neurones disease. So, you've got 10 families advocating, 10 families that know more people, 10 families that have a chance of knowing someone that's higher profile that might be able to help, like footballers and [their relatives], which is absolutely fantastic," she said.

"But if you've got 10 people with Huntington's the likelihood is that it covers two or three families. They're way too busy, drowning in care and emotional trauma to be able to do any awareness campaigning."

Ms Brooking says she does awareness campaigns because she feels survivors' guilt.

"It's my way of coping with the fact that I don't have Huntington's disease," she said.

"My job I feel is to create education and awareness, we need more awareness to get more funding, because there is no government funding. We're tiny, there's myself and four others that help me to do what I do. It's really difficult raising funds for something people know nothing about."