Editorial: Walk 4 Hope for Huntington’s

Originally written for HerCanberra

Like most Canberrans, a typical weekday for Chelsey Kosalka involves working a fulltime job.

Unlike most Canberrans, when she leaves the office most afternoons, Chelsey heads straight for a Belconnen nursing home where she visits her dad, telling him stories of her day and their two pet German shepherds.

Chelsey’s father, Joseph, has Huntington’s Disease and now at just 28 years old, she too faces the prospect of this life-altering disease.

Known as ‘the cruelest disease known to man’, Huntington’s Disease (HD) is a genetic disease that affects the brain. Those with the gene will inevitably develop the disease and face a 50% chance of passing on the same fate onto their children. Huntington’s is characterised by involuntary movement and intellectual, emotional and behavioural problems that resemble a devastating combination of Alzheimer’s, Dementia, Parkinson’s and Schizophrenia.

For Chelsey, HD’s impact spans generations. Her grandmother had the disease before passing away in 1996 and eventually her father would be diagnosed also.

Chelsey’s dad found out he had the HD gene in his forties.

“He started to present some signs and eventually was forced into an earlier retirement than he probably would’ve liked,” she explains.

Despite trying to remain active for as long as possible, as a foreman, her father was forced to finish work altogether. “At the cessation of work, he declined fairly rapidly, ending up in fulltime care in 2015,” she continues.

Such is the genetic nature of the disease, Chelsey has recently commenced testing for HD, hoping to halt the harrowing disease’s generational impact in its tracks.

“Up until maybe a year ago, I didn’t want to know [if I had it] but my partner and I have started to talk about having kids,” says Chelsey. “After meeting with Huntington’s NSW & ACT and speaking with a few of them about getting tested, they steered me towards more self-research [and] I got to understand a lot of the implications”.

“Being so young, 28, [and] not knowing if I’ve got it and how that will impact on my future if I decide to have a family of my own,” she explains. “I need to know in terms of mapping out my future and commitments”.

Most pertinently, the potential to pass HD onto her own children. Should Chelsey possess the gene, she will need to undergo IVF to ensure she can select an embryo without it.

“It’s not something that I want to pass on and I’m sure if Dad has the chance back in his day to bypass the gene and avoid passing it on, he probably would have,” says Chelsey.

Like many misunderstood diseases, public stigma remains a troubling factor facing families affected by HD. A lack of awareness and common misinterpretation of symptoms in the general population often results in feelings of isolation for those living with or caring for someone with HD.

“I suppose people jump to conclusions,” says Chelsey. “I’ve been told that the general public would think that [Nan] was psychotic”.

“They take the mood swings to heart or the wrong way if they’re unaware of the disease, they just think that it’s just the person.”

Thankfully, through Huntington’s NSW & ACT, Chelsey has found comfort in others experiencing the horrors of the disease.

Further establishing public awareness of HD, the association’s annual Walk 4 Hope returns this weekend. On the tail-end of Huntington’s Awareness Month, the walk not only aims to raise much-needed funds and awareness for HD research, but fight the very isolation experienced by Chelsey and her family.

Designed to be inclusive of everyone, Walk 4 Hope is an invaluable opportunity for family and friends to come together, share their stories, and most importantly, realise they’re not alone in the battle against HD.

Participating in the walk herself for the first time last year, Chelsey has set a target to raise $5000 before this year’s event.

“I jumped on board just five days out from last years event and managed to raise just over two and a half grand. I met with some lovely people through the event and came to learn that, in Canberra especially, we’re not the only ones!”