Wednesday, March 6th, 2013

INTERNATIONAL LYMPHOEDEMA AWARENESS DAY IS SUPPORTED BY THE AUSTRALIASIAN LYMPHOLOGY ASSOCIATION

To mark International Lymphoedema Awareness Day (6 March) during Lymphoedema Awareness Month, leading Australian researcher Professor Sharon Kilbreath of the faculty of Health Sciences at the University of Sydney and a member of the Australasian Lymphology Association (ALA), today announced strategies to conduct vital research into filarial lymphoedema, an international health endemic currently affecting more than 120  million people worldwide.

Filarial lymphoedema is common in many developing countries particularly those in tropical regions including our neighbours, Timor-Leste and is dominant throughout South East Asia, with more than 1.3 billion people in 72 countries susceptible to the infection as well as visitors to these regions.

Transmitted in much the same way as malaria, filarial lymphoedema is a parasite condition acquired from the bite of an infective mosquito, the larvae enter the skin and develop into adult worms in the lymph nodes. Although usually acquired in childhood the filarial lymphoedema develops in adulthood as a chronic and largely untreatable condition known as elephantiasis.  In its advanced stage chronic swelling of the limbs and genitals, leads to severe physical disability and social isolation. 

While the World Health Organisation has launched a preventative program, Global Programme to Eliminate Lymphatic Filariasis (GPELF) through Mass Drug Administration (MDA) aiming to eliminate lymphatic filariasis as a public-health problem by 2020 with morbidity management an integral part of the WHO GPELF, there are millions of people already infected whose health and quality of life will dramatically deteriorate for years to come.

Filarial lymphoedema currently affects more than 10% of the population of Timor-Leste (the exact figure is unknown). In collaboration between Australia and the Ministry of Health, Timor-Leste, this vital study funded by the University of Sydney Timor-Leste Health Fund (Isin-Diak Fund), aims to improve early detection and intervention to prevent progression to severe filarial lymphoedema.  It is hoped that results can have a positive impact on sufferers in other underdeveloped nations around the globe.

"One of the world's newest nations, Timor-Leste has limited healthcare services and resources and with local knowledge of filarial lymphoedema severely limited, for those with this debilitating condition, there is no effective diagnosis or management. To help minimise the devastating impact the infection has on patients and communities, Professor Peter McMinn, Associate Professor Leigh Ward and I have commenced a program of research to first detect early stage lymphoedema and then explore and develop approaches to manage the condition in countries that have limited healthcare resources," said Professor Sharon Kilbreath.

The importance of early diagnosis and intervention of filarial lymphoedema cannot be overstated.  Unlike many people living in developing countries, Australian Isobel Bishop (77), a retired Minister who was infected with filarial lymphoedema while in Singapore in 1969 and diagnosed in 1975, has had the benefit of being treated by specialist lymphoedema therapists in Sydney which drastically limited the impact the disorder has had on her life.

"Having lived with the condition for 44 years, I am incredibly grateful for the specialised care I've received in Australia. I can only imagine what it must be like for people in Timor-Leste and the Pacific Islands where there is no early intervention or management.  I have no doubt that this research will inevitably improve the lives of so many people around the world who suffer from this form of lymphoedema," Mrs Bishop said.

Professor Kilbreath said, "Early diagnosis and intervention in patients affected by all types of lymphoedema is the primary means of minimising the impact it has onpatients.  Detection of lymphoedema is typically through comparison of the measured circumference of the affected limb against a similarly located circumference of the unaffected limb, a crude and insensitive measure.  We have started research using bioimpedance (an Australian invention) for the detection of changes prior to the phase where significant tissue changes have occurred.  While there is little that can be done for severe cases of lymphoedema in Timor-Leste, conservative approaches may reduce or even reverse changes with people with early or less severe filarial lymphoedema. 

"Building on the MDA program ‘Lumbriga... Mak Lae Duni! (Worms... No Way!) for the control of lymphatic filariasis in Timor-Leste led by Professor Peter McMinn, this study will also build on expertise developed in early detection of lymphoedema as a result of treatment of breast cancer. Bioelectrical impedance is an innovative method, developed in Australia with research proven capacity to detect very early lymph fluid increases in the arm after breast cancer surgery. We hope to develop and implement a novel and effective application of bioelectrical impedance specific for developing regions, with the aim of detecting individuals infected with chronic filarial worm infection but with early stage lymphoedema when early intervention treatments are effective.

"While our initial research has determined the benefits of conducting a more detailed study, we now seek funding to support this initiative. A key component of the project will be to develop in-country expertise by training local healthcare workers enabling them to identify early signs and symptoms and undertake patient assessments and interventions ensuring patients have ongoing access to essential care that will minimise the devastating effects of the condition," said Professor Kilbreath.

Dr Helen Mackie, a specialist lymphedema medical consultant and President of the Australasian Lymphology Association (ALA) said, "The Australasian Lymphology Association fully endorses this inter-country collaborative research and education initiative for the early detection and management of filarial lymphoedema in developing countries.  It is vital that research is undertaken to help address the current and future healthcare needs of developing nations in identifying and managing filarial lymphoedema.

"While the WHO MDA global preventative measures are gradually being implemented, there are still many people in underdeveloped countries already infected with filarial lymphoedema and without early diagnosis and management, will continue to suffer unnecessary hardship from this painful and debilitating condition. It is hoped that the outcomes of this Australian research initiative will deliver positive implications on an international scale for many developing countries over the coming decades, specifically, Australia's tropical neighbours," Dr Mackie said.

Lymphoedema Awareness Month is the ALA's month-long campaign aiming to educate Australians most at risk about the early signs and symptoms of lymphoedema so they can seek early diagnosis and treatment to minimise the impact the disorder might have on their health and their life.  This is consistent with the filarial lymphoedema study goals. An incurable disorder, there are two types of Lymphoedema, primary and secondary.  It affects people of all ages and occurs when the lymphatic circulation fails to function correctly causing persistent and if untreated, often extreme swelling of the limb(s) and other areas of the body.

In Australia, it is estimated that 400,000 Australians sufferer from lymphoedema. Approximately 100,000 people have primary lymphoedema which may be present at birth, develop at the onset of puberty or it may not become apparent until adulthood, often the triggering factor cannot be identified.  However, those most at risk of developing secondary lymphoedema are cancer survivors where damage to the lymphatic system has occurred as a result of removal of lymph nodes, radiation or chemotherapy treatments. While the exact statistics are not known due to many people going undiagnosed, the number of Australian cancer survivors with secondary lymphoedema is conservatively estimated at 300,000.

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  registered practitioner which can be found by visiting the ALA's National Lymphoedema Practitioners Register at lymphoedema.org.au.

Visit www.lymphoedema.org.au today to learn the symptoms of lymphoedema, locate a registered practitioner, make a donation to support education and research or to register an Iced Tea PartyTM. The first 200 to register will receive complimentary delicious Lipton Ice Green Tea. Or, to support filarial lymphoedema in Timor-Leste please contact Sharon Kilbreath ([email protected]).


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Keywords

lymphoedema; australasian lymphology association; Filarial lymphoedema; Sharon Kilbreath; Isobel Bishop; Timor-Leste; International Lymphoedema Awareness Day; lymphoedema.org.au

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