Do you know what lymphoedema is?
If you don’t, this is your chance to learn about a condition affecting more than 300,000 Australians annually.
Lymphoedema Awareness Week kicked off on Monday, March 4.
This year, the Lymphoedema Association Australia has partnered with local councils and businesses nationwide for the ‘Shine a Light on Lymphoedema’ campaign.
More than 100 landmarks across the country will be bathed in blue light to spotlight the “widely misunderstood and under-diagnosed” condition.
Lymphoedema is swelling in the body’s tissues, resulting from a build-up of protein-rich fluid that usually circulates and drains through the lymphatic system.
While it primarily impacts the arms and legs, it can also manifest in the chest wall, abdomen, neck and genitals.
It can be caused by cancer treatments that remove or damage your lymph nodes.
Primary lymphoedema is a very rare, typically genetic condition, but secondary lymphoedema is more common, resulting from surgery, radiotherapy, trauma, infection and cancer treatment.
The association is rallying Australians to donate towards establishing a support line dedicated to aiding individuals living with lymphoedema.
This service aims to offer guidance, emotional support and a sense of community to those navigating the challenges of lymphoedema, ensuring they do not face their journey in isolation.
In June 2023, The Australian Institute of Health and Wellbeing released a report into the prevalence of lymphoedema in Australia, highlighting the “lack of awareness of lymphoedema among medical practitioners leading to the under-diagnosis of the condition”.
It is estimated that 24 per cent of cervical cancer patients and 20 per cent of breast cancer patients develop lymphoedema, as well as nine to 29 per cent of melanoma patients due to damage caused by surgery or radiation to the lymph nodes.
It is estimated that one in 6000 people are born with the congenital condition known as primary lymphoedema.
It affects the physical and mental health of those living with it, while carers, especially of children with the condition, struggle to find suitable management plans due to limited awareness of the condition — even among the medical fraternity.
Lymphoedema Association Australia president Lyn Balfour has lymphoedema in her left arm after breast cancer treatment in 2015.
“When I was being diagnosed, it was an incredibly difficult and stressful time — and I was one of the lucky ones who got a prompt diagnosis, which enabled me to access effective treatment,” she said.
“Not everyone is that lucky.
“I have had a life-threatening condition replaced by a life-long condition.
“This can be overwhelming and can make many people feel anxious and alone.
“That is why we, the Lymphoedema Association Australia, are raising money to fund a support line for people living with the condition so that they can seek additional information, receive support, and we can ensure that no-one walks their lymphoedema journey alone.”
Association vice-president Dr Debbie Geyer has the condition in her leg, diagnosed at the age of 20.
She said doctors received little training on lymphoedema and were often unable to recognise and diagnose the condition, let alone refer patients for treatment.
“A support line is essential to give people somewhere to turn to after diagnosis,” Dr Geyer said.
“There is a lot of collective wisdom about how to navigate the health service, where to get support, and what helps; however, it is currently difficult to access.
“Lymphoedema needs to be recognised and funded in the same way as other chronic conditions, such as diabetes, for people to gain access to essential services and ensure there are trained lymphoedema health professionals in cities and remote communities.”
For more information or to donate, visit www.lymphaustralia.org.au