Lynch Syndrome Awareness Day on Tuesday, 22 March is striving to shine a light nationwide on this lesser known genetic disease, and it’s got the help of some award winning research.
Beth Fairbank, Founder and Managing Director of Lynch Syndrome Australia, says the goal for 2016 is to start the conversation about Lynch syndrome between friends, within families, among doctors and in the wider Australian community.
“Lynch syndrome is not cancer but is a fault in one gene that someone is born with, potentially resulting in several cancers during a person’s lifetime,” she explains.
“It is poorly understood and woefully under-diagnosed, because it’s complex.”
Despite this, the impact of Lynch syndrome is a significant one across the country, with the hereditary susceptibility linked to bowel cancer and endometrial cancer – altogether more than eight different cancers throughout the body.
“A conservative estimate indicates that Lynch syndrome affects roughly 60,000 people, but approximately 95% of those affected have no idea that they are at risk,” Fairbank says.
People can spread the message about Lynch syndrome by holding an event, donating to the cause or spread a message on social media.
Breaking down barriers
For Dr Natalie Taylor (pictured above, left), her journey to helping Australians with Lynch syndrome began three years ago with a visit from her home in West Yorkshire, England.
Today, she’s leading award-winning research that aims to change the way the disease is detected and managed in Australia.
It was on Dr Taylor’s trip to Australia that an introduction to Professor Robyn Ward, Director of the Translation Cancer Research Centre, sent her on the path that would result in winning the Cancer Challenge of the Year award in 2015.
“I read one of her papers on population-based molecular screening for Lynch syndrome, and some of the issues raised in the article around the implementation of screening into practice sparked my interest,” Dr Taylor says.
“I wondered whether the behaviour change and implementation science methods I had been using to enhance the translation of other clinical guidelines would be effective for improving [Lynch syndrome] screening, and subsequent referral practices.”
Fast-forward to 2015 and she’s living in Sydney, working at Macquarie University and winning recognition for leading the research study: Achieving behaviour change for detection and management of Lynch syndrome.
By identifying current barriers, it seeks to improve the way that Lynch syndrome cases are passed on to appropriate services.
“We’re hoping that all colorectal cancer patients receiving surgery at participating hospitals who carry the gene will be identified as quickly as possible,” Dr. Taylor says.
“This will make them eligible for more frequent screening to prevent subsequent cancers, and will also mean they can inform their relatives about their increased risk.”
Due to finish in June, 2016, the outcomes have already been encouraging, and Dr Taylor has significant hopes for the impact it could have across Australia.
“The Cancer Challenge of the Year award has allowed our team to embark on an interesting and worthwhile piece of translational research to improve care for cancer patients, and understand the processes involved along the way.
The Cancer Challenge of the Year is presented by the Translational Cancer Research Network (TCRN) which is a research centre program funded through the Cancer Institute NSW.