Have your say in the 'Australian first’ health consumer survey for Lynch syndrome. (click the blue link below)
Lynch Syndrome Survey
We need your help...
Do you have Lynch syndrome? We need twenty minutes of your time.
Lynch syndrome changes our lives. Often before we even know about it. One of our biggest challenges is the lack of knowledge: our own, about our risks and those of our family; that of our doctors and practitioners and amongst Australians in general about Lynch syndrome and its consequences.
We have designed Australia’s first ever, comprehensive health survey about Lynch syndrome. We understand that we are asking you to share a lot of information, much of it very personal and no doubt painful.
But, if we all share what we can about our diagnosis, our experience with cancer(s), our family history, our surveillance regime and indeed how we manage to live with Lynch syndrome in our lives, we will be better equipped to advise cancer organisations, medical practitioners and the media about our ongoing struggle and our specific needs.
This is a chance for each of us to make a difference: to our own lives and to the lives of our families. A difference to how our Lynch diagnosis is supported and treated.
Please give us your time and share your information. Spread the word. Pass on this email and the link to all family members, both here and abroad, who have been affected. Inform your fellow Lynch sufferers on online forums and social media. The more responses we get, the more useful the data we will have and the bigger our voice will be.
Lynch Syndrome Awareness Day is on 22 March, worldwide. What a great day this would be to launch our findings. Please help and give us twenty minutes.
Twenty minutes that might change our Lynch future for the better.
Thank you so much!
Take the Lynch syndrome Survey
Lynch Syndrome Survey Press Release
Media Release - Monday 15 December 2014
$5 GP rebate reduction would spell disaster for at-risk Australians’ preventative health programs
Tens of thousands of carriers of faulty, cancer-causing genes associated with Lynch syndrome already contend with a significant cost burden for their preventative health care. The latest changes to GP payments signalled by the government would impose an even greater medical cost on this overburdened group of vulnerable Australians.
Click on the PDF link below to read more.
The Mutation Of A Single Gene Dramatically Increases The Chances Of Contracting Cancer
The mutations of specific mismatch repair (MMR) genes including but not limited to MLH1, MSH2, MSH6, PMS2, and EPCAM-TACSTD1 deletions are responsible for Lynch syndrome. These genes work in repairing mistakes made when DNA is copied in preparation for cell division. The defects in the genes disallow repair of DNA mistakes and as cells divide, errors stack and uncontrollable cell growth may result in cancer.
Confronting The Risk
Having no gender, ethnic or cultural preferences, Lynch syndrome targets families, predisposing them to cancer at a younger than average age. Children of a Lynch syndrome parent possess a 50% risk of acquiring a mutation. During their lifetimes, those diagnosed face up to an 85% risk of contracting colon cancer and, as well, women have up to a 65% risk of contracting endometrial cancers. An increased risk exists of contracting a number of other cancers including those of the stomach, pancreas, kidney/ureter tract, hepatobiliary tract, gastric tract, prostate, ovaries, gall bladder duct, brain, small intestine, breast and the skin.
In Australia alone, tens of thousands of people are believed to be affected by the Lynch syndrome. Less than five percent (5%) are currently diagnosed. Lynch syndrome is not a rare condition but an extremely underdiagnosed condition in which the cancers it creates are often quite preventable.
Lives Can Be Saved Through Awareness And Testing
Despite the odds, immense hope exists; thanks to modern technology and the passionate and diligent efforts of dedicated researchers and medical professionals. Though no cure has yet been discovered, through genetic testing, the risk for cancer in families can be identified. By exercising preventative measures (early diagnosis, surveillance and treatment), enhanced quality of life and longevity can be achieved and individuals and families can be protected from cancer.
PROTECTING OUR FAMILIES AND OURSELVES
First Line of Defense
THE FAMILY HISTORY
Lynch syndrome is inherited through families. The first step of diagnosis of Lynch syndrome, in order to obtain provision of early and potentially life saving prevention measures, is by researching and documenting a comprehensive family history to present to one’s general practioner for assessment.
Second Line of Defense
The only known method of accurately diagnosing Lynch syndrome is through genetic testing, the closest thing to a cure which is known today. If the family medical history indicates three family members, two of which are directly related to a third, and who each sustained Lynch cancers, genetic testing should be discussed with one’s GP.
Third Line of Defense
Once Lynch syndrome has been diagnosed, a highly targeted screening and medical management program is essential and may be lifesaving. During routine surveillance screening, tumors may be discovered and are more easily removed or treated before becoming life threatening.
Lynch Syndrome Australia will be conducting an online survey soon. Please check back for more details.
KNOWLEDGE IS POWER
Click on the link above to see how these medical professionals are improving the awareness and understanding of Lynch syndrome.
As a Healthcare professional, I am delighted to support Lynch Syndrome Australia’s Knowledge is Power campaign and am committed to helping to improve awareness of Lynch syndrome, an hereditary condition which exposes families to an extreme high risk of contracting multiple aggressive cancers.
Name – Professor Robyn Ward
Occupation – Head of the Adult Cancer Program Lowy Cancer Research Centre
Location – Prince of Wales Clinical School, UNSW
Name – Dr Daniel Buchanan
Occupation – Senior Research Fellow
Location – Department of Pathology and Centre for Epidemiology and Biostatistics, University of Melbourne
Name –Dr David G. Hewett, Associate Professor & Director, Medical Leadership Program
Occupation – Gastroenterologist and Therapeutic Colonscopist
Location – University of Queensland School of Medicine
Name –Dr Kathy Tucker
Occupation – Geneticist
Location – Prince of Wales and St George, Hereditary Cancer Clinic
Name –Dr Rachel Susman
Occupation – Clinical Geneticist
Location – Genetic Health Queensland, Royal Women’s Hospital
Name –Dr Michael Gattas
Occupation – Clinical Geneticist
Location – Genetic Health Queensland & Brisbane Genetics, Wesley Medical Centre
Name –Professor Andreas Obermair
Occupation – Gynaecological Oncologist
Location –Royal Brisbane Women's Hospital & Greenslopes Private Hospital
Name –Jan Wakeling
Occupation – Associate Genetic Counsellor/Coordinator
Location –QLD Familial Cancer Registry, Royal Women's and Children's Hospital - Genetic Health QLD
Name – Dr Rachel Susman
Occupation – Senior Genetic Counsellor
Location –Royal Women's and Children's Hospital - Genetic Health QLD
Name –Professor Finlay Macrae
Occupation – Head, Colorectal Medicine & Genetics
Location –Royal Melbourne Hospital
KNOWLEDGE IS POWER - PRESS RELEASE
Our primary mission is to serve our Australian communities by focusing on providing support for individuals afflicted with Lynch Syndrome, creating public awareness of the syndrome, educating members of the public, outreach to medical professionals, in person, by mail, phone and through exhibiting at medical conferences
We will offer complimentary speaking services to organisations and institutions and provide support for Lynch Syndrome research endeavour.
What is Lynch Syndrome?
Lynch syndrome, also known as hereditary nonpolyposis colorectal cancer (HNPCC) predisposes individuals to an approximate 80% chance of contracting colorectal cancer during one's lifetime as well as an up to 60% chance of contracting endometrial cancer.
Diagnosed individuals possess a higher than average risk of contracting various cancers of the gastrointestinal organs, cancers of the abdominal area, the ovaries, the esophaegus, the bladder, the ureter, the kidneys, the liver, the gallbladder duct, the pancreas, the prostate, the skin and the brain.
Because Lynch syndrome is hereditary, a 50% chance exists that a person will pass it down to one's children. Lynch syndrome does not skip generations.
Lynch syndrome is the result of an inherited genetic defect mostly involving the MLH1, MSH2, MSH6 and PMS2 genes. Other less common mutated genes involved with Lynch syndrome exist but the most common are the MLH1 and the MSH2.