National awareness days or weeks help raise the profile and share information about conditions for which many people live with every day. Perhaps the most well-known is World AIDS day, first marked in 1988 on 1 December and continues annually.
In the month of March in the United Kingdom, attention is focused on prostate cancer, ovarian cancer awareness, sleep and nutrition.
One day that does not often make the top of the list is 22 March which marks Lynch Syndrome Awareness Day. Lynch Syndrome is a rare genetic condition which runs in families that gives people a higher risk of some cancers. Before working at the Science Museum, I’d never heard of it. According to Bowel Cancer UK, an estimated 175,000 people in the UK have Lynch syndrome but fewer than 5% of individuals know they have the condition. Researchers have identified five key genetic changes that make people with Lynch Syndrome more likely to develop bowel cancer under 50 years of age and are at higher risk of cancers of the womb, ovary, stomach, pancreas, small bowel and ureter and renal pelvis.
In Medicine: The Wellcome Galleries, we share the experience of Deborah, diagnosed with Lynch Syndrome, who talks about the profound impact the condition has had on her life and health. We’ve also connected to Lynch Syndrome UK, which started as online social media group in 2014 to share information on this rarely talked about condition. They came together after finding there was a lack of resources and continue to provide support for anyone who needs it. Their symbol evokes a DNA strand with the different colours and dots show the different connections to Lynch Syndrome. Based on their logo, they are encouraging people to wear something dotty on Lynch Syndrome Awareness Day to show their support.
One of the challenges of Lynch syndrome is detecting it early. Typically screening for bowel cancer is aimed at people aged 60 and 74, who are sent a test in the post every two years.
In February 2017, the National Institute of Health and Care Excellence recommended that everyone who is newly diagnosed with bowel cancer in England should be tested for Lynch syndrome. Bowel tumour testing, blood samples and genetic tests can all help diagnose Lynch Syndrome, and individuals are further supported with genetic counselling.
Whilst a Lynch Syndrome diagnosis can be scary, it can help individuals be more aware of any changes in their bodies and help to identify whether these indicate signs of cancer more quickly. Many people with LS also have a colonoscopy every two years to help monitor any changes in their bodies.
LS is named after the American cancer specialist Henry Lynch (1928-2019) who had noticed a family group, family G, where stomach, intestinal and uterine, cancers appeared at a young age.
Lynch confirmed his idea with a genetic study of 650 members of the same family, publishing his results in 1971. He called this “cancer family syndrome.” However, it took years for his work to be generally accepted by the scientific and medical communities. In 1984, others renamed it Lynch Syndrome in honour of his work.
Like so many medical and healthcare experiences, representing them in a museum is incredibly difficult. Sometimes only the tools of treatment or diagnosis have been collected, detached from personal experiences. Slowly, we are trying to make that change in our collecting to ensure people’s experiences through objects are captured The upcoming Cancer Revolution: Science, innovation and hope exhibition opening at the Science Museum on 25 May does exactly that – connecting past, present and future of how cancer is prevented, detected and treated with people’s lived experience.