Huntington’s disease has had an unbelievable impact on the life of Amanda Macdonald.
Her father died from the genetic disease in 2012.
Two of her four sisters had Huntington’s. One died from Huntington’s while the other took her own life. The progressive brain disorder impacts mental and physical functions.
Ms Macdonald moved from Sydney to Launceston in 2013 to be the full-time carer for her sister Shauna, who was diagnosed with Huntington’s in 2004, and Shauna’s daughter Lakyn.
Ms Macdonald said she struggled to adjust after the move, and became “quite depressed”.
“With Shauna’s symptoms … she didn’t want to go anywhere, so that meant I couldn’t go anywhere,” she said.
“I felt quite isolated, [and] couldn’t make friends.”
Shauna’s health deteriorated after she gave birth.
Ms Macdonald found it “stressful” explaining why she was taking more responsibility for Lakyn to Shauna, whose worsening condition impacted her ability to parent and comprehend things. Shauna took her own life in May 2015.
Ms Macdonald is Lakyn’s full-time carer. It is unknown whether the three-year-old has inherited Huntington’s.
“She has a 50-50 chance of having the gene … but that will be her decision to make, whether she wants to be tested or not,” she said.
“I’m still grieving for Shaunie … when [Lakyn] cries, she’ll cry for mum, and that’s quite hard for me to deal with … but all in all I think she’s doing quite well for such a little kid.
“It’s hard being a single mum, I dont even have my mum to help support me.”
Ms Macdonald said symptoms vary between patients. The 29-year-old believes there is a lack of awareness around Huntington's. She is part of Huntington’s Tasmania, and started the Launceston committee in 2015.
“I’m quite involved in [raising awareness] now, and I don’t really want to stop, because it makes me feel like I am able to do something,” Ms Macdonald said.
“When I found out I was gene negative, it’s quite a guilty feeling, knowing my sisters have it and I don’t.”
If you have been impacted by Huntington’s and would like to contact the group, you can contact the Huntington’s Tasmania Facebook page or call 03 6431 3403.
If you need help, you can call Lifeline on 13 11 14 or beyondblue on 1300 22 4636