"Huntington's disease is a condition that stops parts of the brain working properly over time, there is currently no cure for Huntington's disease or any way to stop it getting worse. As the disease effects different parts of the brain it impacts movement, behaviour and cognition, becomes harder to walk, think, reason, swallow and talk."
In a sobering start to a ten-minute condensed journey on whether she should find out if she has Huntington's, 1 NEWS political producer Lillian Hanly reads out the description of the symptoms of the inherited neurodegenerative disease that she has a 50 per cent likelihood of carrying.
The short Loading Docs film isn't about the disease itself, but the decision, the impact, and the outcome of finding out whether she, like her mum and grandfather, has Huntington's disease.
Would you want to know if you were living with, and ultimately experiencing life with an incurable disease? Who else will it impact? Will people treat you differently? Will you think of yourself differently? Will you be a different person?
Hanly explores these questions with her family, in what she says is her way of contributing to those facing a path with Huntington's in their future.
She said she wanted to draw attention to the difficult choice young people face and that hope can be found in places other than just medical research, such as the strength her mum holds living with Huntington's and the support she gives her daughter should she inherit it too.
Drawing more attention to the disease in the hope it could highlight research development was part of the reason Hanly wanted to create the film.
Hanly said before someone can even consider being involved in some of the treatment trials that have been underway for Huntington's, they need to get tested, which for some may add to the pressure in their decision to know. In addition, there is the anxiety and stress others may feel around participating in medical trials, and some people may just not want to, Hanly said.
However, New Zealand has put itself on the map in terms of neuroscience.
New Zealand's only human brain bank that holds brain tissue, the Centre for Brain Research (CBR), have led some of the biggest scientific discoveries in Huntington's research.
"Including the discovery of the gene which causes the disease and understanding the relationships between brain cell loss and the symptoms patients experience," Hanly said.
Dr Malvindar Singh-Bains from the Centre for Brain Research believes there is hope when it comes to Huntington's disease, "because out of all of the neurodegenerative conditions that we're studying, Huntington's disease has a clear target".
"It's not a needle in a haystack condition. It is a condition that I believe we can fine-tune to control so that patients can have a long quality of life.
"A 50 per cent chance inheritance is a big deal," she said. "It's really, really serious if you're at risk of the disease and it needs to be something you take into account when perhaps you're planning your life for example."
Dr Singh-Bains said the Huntington's gene was discovered in 1993, since then there has been years and years and years of small, teeny, tiny breakthroughs in Huntington's research".
"All of a sudden, with genetic technology and gene silencing therapies, there's a whole new family of therapeutics that have come out to try and target the Huntington's gene," she said.
"And with that development of technology and with science, a whole lot of drug companies have now come in on board and are now willing to push funding toward some of these treatments.
"We are smelling progress."
SHARE ME