KALAMUNDA Senior High School sports teacher Teagen Smith has been nominated in the Western Australian Young Achiever Awards for her passion in raising awareness of a rare genetic disease.
In 2015 the 28-year-old Jane Brook resident was diagnosed as gene positive to Huntington’s Disease, a progressively degenerative neurological disease with no cure.
“It was incredibly disheartening to learn I was gene positive,” she said.
“I remember bursting into tears as soon as the result was read to me and feeling as though I had lost everything in that single moment.”
But Mrs Smith said time had helped her come to terms with the diagnosis and led her to share her story in an effort to reduce the stigma surrounding the disease and raise awareness on promising research in the field.
“Unfortunately there is no cure for Huntington’s Disease, however there have been a number of groundbreaking discoveries in recent years,” she said.
“The most exciting recent research is from Edith Cowan University’s HERO’s (Huntington’s Environment Research Optimisation Scheme) study which I participated in.
“It involved physical and cognitive exercise three times a week over nine months where they found a significant improvement in cognitive function, problem solving, verbal memory, sleep strength and reaction times.
“This is significant because people who are gene positive experience disturbed sleep and a decline in thinking and reasoning skills.”
Ms Smith said Huntington’s Western Australia was recently awarded $100,000 from Impact 100 to develop an app to deliver a free program to allow those with pre-onset and people with Huntingtons, to potentially delay symptoms of the disease, improve quality of life and independence.
“We really are living in a time of hope where science and research are miles ahead of where I ever thought it could go,” she said.
“There is also an exciting study working on gene silencing which is using targeted molecules to tell cells not to produce the harmful Huntington protein.
“This will take some time before it is available but I am very excited this is something that I could access in years to come.”
Mrs Smith said she had also taken to social media to help others living with Huntington’s Disease or at risk.
“When I received my results I still wanted more information but there is not a lot of research for someone who is gene positive, but not symptomatic, so I saw an opportunity to try to fill some of that gap,” she said.
“I share my experience of what it’s like to live as gene positive, what changes people could make to their lifestyle, raise awareness of the disease and just be a positive source of information.
“People from America, London and Pakistan have contacted me to share their experiences, their fears of getting tested or just to say thanks for being so positive.
“This disease is truly awful and it can be so heartbreaking to watch someone you love go through it so I aim to provide a positive platform for people.
“To know that I have made an impact on people makes me proud and also reminds me that I’m not alone.”
Mrs Smith said uncertainty about the future and when the symptoms would present was always an obstacle.
“I know I should be okay until I’m in my mid-50s but I often second guess myself if I trip over my own feet or forget to do something,” she said.
“But I am not one to sit around and wait, I have to get up and do something.
“I believe that, as much as it sucks to know that I will one day develop this disease, it has also provided me with so many great opportunities.”
Winners of the 2017 WA Young Achiever Awards will be announced on May 12.
By Sarah Brookes