When Robyn Burgess noticed her brother’s hands shaking as he drank coffee, she put it down to the stress of working as a mine worker for more than 40 years.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
In March – four years later – a link was drawn between these tremors and his depression, leading to a diagnosis of Huntington’s Disease.
“It was a bit of a relief, because we had a name to work with,” Ms Burgess said.
“It’s heartbreaking – he was so fit and healthy and now, there’s no way he will ever be employed again.”
Ms Burgess said her brother, who asked not to be identified, was now facing not only uncertainty in his future, but his family’s.
“If you carry the gene there’s a 50 per cent chance of passing it on to your children,” she said.
“My brother’s son was diagnosed – we still can’t find in our family where this originated from.”
In September, Ms Burgess formed the first support group for HD sufferers and their families living on the Border and in Wangaratta.
“I wanted to find out if there were any groups, which there wasn’t,” she said.
“We went to a seminar in Wangaratta, where I met Ania and her team.”
Ania Sieracka, community engagement co-ordinator for Huntington’s Victoria, said the inaugural meeting of the Border group came out of a regional roadshow.
“Robyn contacted us as I was sending requests to people to canvas whether they would be interested in starting a group,” she said.
“Their first meeting showed the community was waiting for something like this for a long time.
“It’s very important for those who might be sitting in the shadows.”
Ms Sieracka said there was a lack of understanding of HD, which impacts the neurological, physical and emotion functioning of about 10 in every 100,000 Australians.
“It’s a disease which takes away functioning and can cause death in the prime of people’s lives,” she said.
Connecting with those affected on the Border is now Ms Burgess’ goal.
“The more it’s spoken about, the more we generate information,” she said.
“We also want to get GPs, and physiotherapists involved, because somewhere along the line these people are going to lose ability to swallow and grip knives.
“It’s the most debilitating disease I’ve ever known.”
The Commercial Club Albury has donated a room for the group’s second meeting on Monday from 5.30pm.
