IMPORTANT MESSAGE FOR ALL AUSTRALIANS DURING
NATIONAL LYMPHOEDEMA AWARENESS MONTH: 1 – 31 MARCH 2012
‘IT’S COOL TO BE KIND’
With up to 66% of prostate cancer survivors, and one in five survivors of a number of other cancers including breast, gynaecological, and melanoma suffering the distressing, debilitating and often heartbreaking effects of lymphoedema, the Australasian Lymphology Association (ALA) today launched their national awareness campaign, ‘IT’S COOL TO BE KIND’ during Lymphoedema Awareness Month.
With the aim of generating awareness of the early signs and symptoms among high risk groups, and encouraging a deeper understanding and empathy for sufferers of lymphoedema throughout the community, the ALA also launched a fundraising initiative inviting individuals, businesses and healthcare workers to raise awareness of the disorder and its symptoms by hosting an ICED TEA PARTY to support vital research into lymphoedema.
Lymphoedema, a progressive chronic disorder of the lymphatic system, occurs when the lymphatic circulation fails to function correctly, causing severe, painful and debilitating swelling where early diagnosis and specialised management by an ALA accredited practitioner is the primary effective treatment. Lymphoedema usually affects the limb(s) and can affect the trunk of the body, breast, head, neck or the genital area.
There is no cure. Lymphoedema affects people of all ages - from birth to old age and if not treated early, the onset of lymphoedema can lead to regular hospitalisation due to infections and have devastating, ongoing effects on both the physical and emotional wellbeing of patients. Only early diagnosis and treatment by an ALA accredited practitioner can reduce the progression of lymphoedema to minimise its impact, limit complications to reduced doctor visits and hospital admissions (which also reduces the cost the healthcare system), and most importantly, minimises the affect the disorder has on the physical and emotional well-being of patients.
In launching ‘IT’S COOL TO BE KIND’ during Lymphoedema Awareness Month, PenelopeSanderson, ALA President said, “All too often we are seeing the physical and emotional damage caused to sufferers of lymphoedema because their condition was not diagnosed and treated in the early stages to minimise its development. This dramatically impacts on positive clinical outcomes for patients, restricts their ability to undertake every day activities and sadly, reinforces feelings of poor body image and low self esteem.
“Through the IT’S COOL TO BE KIND campaign, the ALA is delivering three important messages; we’re telling sufferers that IT’S COOL TO BE KIND to yourself and reminding them of the importance of keeping the affected areas cool to help manage the severity of their disorder.
“For high-risk groups such as cancer survivors, we’re telling them IT’S COOL TO BE KIND to yourself by ensuring they understand the risk of lymphoedema, learn the symptoms and seek early diagnosis by an ALA accredited practitioner to ensure the most effective treatment to minimise the impact the disorder can have on your physical and emotional health.
“And, due to a lack of community awareness, people with lymphoedema are often subject to staring and questioning and we are hoping to create a deeper understanding of the suffering patients experience when living with lymphoedema. It’s a life-long disorder and can be devastating to patients so we’re also reminding the community to understand that ITS COOL TO BE KIND to someone they might know or meet who has lymphoedema and that it’s ‘not cool’ to be cruel,” Ms Sanderson said.
There are multiple causes of lymphoedema., including some people being born with a genetic predisposition who may develop lymphoedema at any stage during their life. In addition, any major damage to the lymphatic system can cause a life-long risk of lymphoedema which can range from 24% to 66% depending on the cancer and treatment.
According to The National Breast and Ovarian Cancer Centre (NBOCC- now Cancer Australia), following a review of research on Secondary Lymphoedema, a conservative estimate of the incidences of survivors experiencing the disorder is alarmingly high with one in five for breast, genitourinary, gynaecological, or melanoma cancers. With the incidences of survivors of other forms of cancer estimated to be much higher (vulval cancer at 36-47%, cervical cancer at 24% and prostate cancer at 25-66%(1)), these statistics substantiate how vitally important it is for people in high risk groups to learn and recognise the symptoms and seek early diagnosis and treatment by an ALA accredited practitioner (1).
Those most at risk are patients being treated for cancer where the lymph nodes are removed or damaged during therapy and a life threatening illness can be replaced with a life-long, painful and debilitating condition. However, if diagnosed and treated early, this distressing and debilitating swelling can be controlled and reduced, infection prevented, the range of movement of the affected area can be improved, and the quality of life for people with the disorder can be greatly enhanced.
“Lymphoedema high risk groups include survivors of gynaecological, breast, prostate and melanoma cancers. We know that many in these groups experience early symptoms of lymphoedema but don’t recognise them so it’s vital that these high risk groups learn the symptoms of lymphoedema and seek early diagnosis and treatment by an ALA accredited practitioner,” Ms Sanderson said.
Early signs and symptoms of lymphoedema can be intermittent and may include:
• transient swelling of a limb or other region of the body
• Infection (due to lymph stasis) is often the first sign of a problem
• feelings of aching, heaviness, stiffness in the affected body part
• limitation of movement
• tightness or temperature changes to areas of the body
• clothing, jewellery or shoes may feel tighter
• swelling may be aggravated by heat, overuse, sustained positions and prolonged inactivity and be more obvious at the end of the day
The ALA, the peak professional body promoting best practice in lymphoedema management, research and education in Australasia is urging people who suspect they have symptoms of lymphoedema to see their doctor and request a referral to an ALA accredited practitioner. To locate a practitioner, patients and doctors can quickly find an ALA accredited lymphoedema practitioner in their region by visiting the National Lymphoedema Practitioners Register at: www.nlpr.asn.au.
As part of the lymphoedema awareness program, the ALA also launched their ICED TEA PARTY initiative, inviting individuals, businesses, healthcare workers and organisations to host an ICED TEA PARTY during Lymphoedema Awareness Month and help raise awareness of symptoms, increase understanding of this debilitating disorder, and raise funds to support vital research.
Create your ICED TEA PARTY and invite your family, friends and staff to come along to be COOL TO BE KIND during Lymphoedema Awareness Month. To register to host your ICED TEA PARTY or to make a donation supporting research to improve treatments and outcomes for sufferers of lymphoedema, please visit: www.lymphology.asn.au
For information about managing lymphoedema or for more information about the ALA, please visit: www.lymphology.asn.au.
MULTIPLE INTERVIEW AND PHOTO OPPORTUNITIES ARE AVAILABLE THROUGHOUT AUSTRALIA & NEW ZEALAND. Interview subjects include:
• Penelope Sanderson – President of the Australasia Lymphology Association
• Representatives from partner organisations
• Specialist lymphoedema practitioners in all states and territories
• Multiple lymphoedema case studies are available from all Australian states and territories and New Zealand
• Multiple events will be conducted in various regions throughout Australia
To arrange an interview or story opportunity and help deliver awareness of lymphoedema and its symptoms across the community, please contact:
Insight Communications - 02 9319 3844
Clare Collins -0414 821 957 [email protected]
Alice Collins – 0414 686 091 [email protected]