A Narracan resident hopes to make life a little bit easier for sufferers of a rare condition by ensuring a wealth of easy-to-understand information is at their fingertips.
Amanda Vosper, who has tested positive to Huntington’s disease, has become an ambassador for a youth-friendly international collective and website in an effort to help others with the condition.
The mum-of-two began her efforts to spread awareness by joining HD Youth Alliance Australia last year, where she connected with some Gippslanders with the disease and helped to host events in Melbourne.
When the alliance joined international Huntington’s Disease Youth Organization, Ms Vosper took the opportunity to become a representative and undertook training late last year.
“The main thing is to get information out there for young people… so they don’t have to feel isolated or that they are doing this by themselves,” Ms Vosper said.
“We took off to Sydney. There was 18 of us… who flew in from across Australia and a young girl from New Zealand to come together to do the training to allow us to then take on a volunteer role.”
Ms Vosper said she would now focus on promoting awareness among young people who may be affected by the disease in a variety of ways, and wanted to learn more.
“Once you are impacted… where do you go for help? There are youth forums (on the website) where people can jump on and have a chat,” she said.
“It’s 24 hour access for those wanting to ask a question to get a response.
“Two people were set up to respond frequently so people aren’t asking questions that no-one answered.”
Ms Vosper said the language on the website was easy-to-understand, with information targeted at children, teens, young adults, parents and professionals.
She said it was not only important to spread awareness in Gippsland patients, but doctors as well.
“Because its one of the rarer diseases, there’s a lack of professional knowledge. A local doctor might see one or two cases in (their) career,” Ms Vosper said.
She said she hoped to also organise events where people affected by HD could catch up and meet in person.
“In the United Kingdom they had a youth camp and they had one in Europe as well – to do something like that would be long term project,” Ms Vosper said.
She said her involvement in the organisation had been helpful to her experiences facing the disease.
“Through my journey I have been able to meet different people who are impacted and affected and have similar passions and pathways, which is fantastic.”
Anyone can learn more about HD at en.hdyo.org
