Little-known cancer gene story trends around the world – Media Release

A story about Lynch syndrome, the most prevalent hereditary cancer risk, has now been read by almost half a million people worldwide, thanks to The Conversation Australia and IFL Science.

Since its publication on Good Friday, The Conversation ‘Explainer’ article, co-authored by Lynch Syndrome Australia Board member and Macquarie University academic, Dr Sharron O’Neill, and Macquarie University translational health researcher, Dr Natalie Taylor, was trending third all weekend on ‘Most Read on the Web’ of The Washington Post.

By Easter Monday evening, 451,925 views were recorded and a short film linked to the article had been viewed over 10, 200 times. Four days after its publication, the Lynch syndrome ‘explainer’ is still trending fourth most widely read on The Conversation, globally.

Dr O’Neill explained, “This article was developed in cooperation with Lynch Syndrome Australia to bring much-needed attention to a condition that affects roughly 1:300 people, yet is virtually unknown. It was intended as a resource for people seeking a detailed explanation of this hereditary cancer syndrome. We weren’t sure what level of interest there would be and were thrilled to see it was re-posted by one of the most popular science websites. With their help, it has reached far more people than we could have possibly imagined.

“Lynch syndrome is a common but incredibly under-diagnosed cancer susceptibility that can lead to many different cancers, in multiple family members, often from a young age. If a family has three blood relatives with these cancers, over two generations, with at least one diagnosed before fifty, then the potential for Lynch syndrome needs to be thoroughly investigated.

“At the moment, only around 5% of those with Lynch syndrome even know they are at risk. If you don’t know, then you cannot take steps to protect yourself. “

Lynch Syndrome Australia was established in 2014 as a registered not-for-profit in Australia and is volunteer-run and survivor-led. This article in The Conversation was part of a suite of activities supported by other cancer charities, cancer control agencies and academics interested in improving Lynch syndrome education and coincided with Lynch syndrome awareness day at the end of March.

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The Conversation article: https://goo.gl/Zvw3WR

 

Facts

  • Approximately 90,000 Australians will find out that they have cancer this year. For some cancers, such as bowel and endometrial, between 5-10% of these will be caused by Lynch syndrome
  • With improved diagnosis some of these people would have known that they were at risk and could have been taking the right steps to protect themselves with preventative measures such as surveillance, chemo-prevention, lifestyle changes and prophylactic surgery.
  • Over half of those few people diagnosed with Lynch syndrome only find out about it after they get cancer and because many of them are young when diagnosed (under 50) and cancer signs are often disregarded by their doctor.

 

About Lynch Syndrome Australia

Lynch Syndrome Australia (LSA) was founded in 2014 and is volunteer-run and survivor-led. It is the only body dedicated to education and advocacy for those living with Lynch syndrome in Australia. Every dollar raised supports education, seminars, campaigning and advocacy on behalf of those with Lynch syndrome.

In 2015, LSA conducted a world-first, comprehensive survey into the experience of Living with Lynch syndrome. 465 people participated internationally with over half of these in Australia. The study investigated the physical, emotional, financial and psycho-social impacts of a Lynch syndrome diagnosis, treatment and ill-health on individuals and their families.

Our website:

www.lynchsyndrome.org.au

A short film: Because you deserve to know

https://www.youtube.com/watch?v=_dARj1Y4R0w

On Facebook:

https://www.facebook.com/LynchSyndromeAustralia

On Twitter:

@LynchSyndromeAU

Media contact:

Susan Morris, Lynch Syndrome Australia

susanmorris@lynchsyndrome.org.au    Tel: 0420 294191