Penelope Sanderson National Lymphoedema Awareness Month Interview

Penelope Sanderson National Lymphoedema Awareness Month Interview

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) 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 Ice 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, Penelope Sanderson, 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 'It's 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%), 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. 'It's Cool to be Kind'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

Interview with Penelope Sanderson

Penelope Sanderson is the President of the Australasia Lymphology Association.

Question: What is Lymphoedema?

Penelope Sanderson: Lymphoedema is a disorder of the lymphatic system and it occurs when the lymphatic circulation fails to function. What essentially happens is people develop swelling usually of limbs which may be the arm or leg or even both legs and when this happens the patient really needs management from a specialised ALA (Australasia Lymphology Association) accredited practitioner.


Question: What message are you hoping to promote throughout the National Lymphoedema Awareness Month of March?

Penelope Sanderson: March is National Lymphoedema Awareness Month and for the whole month we are having a focus on Lymphoedema and the national awareness campaign, 'It's Cool to be Kind'. We want to generate awareness for the early signs and symptoms of Lymphoedema. There are high risk groups including people who have had cancer and cancer treatment may be at risk of developing Lymphoedema.

One of the other messages, which I think relates quite strongly to young women, is really encouraging It's Cool to be Kind to people suffering from Lymphoedema. Those with Lymphoedema often receive unpleasant staring and questions as there is a misunderstanding in the community about what Lymphoedema is and that can cause quiet a lot of embarrassment on the part of the person, with the condition; especially because if they do explain they have Lymphoedema to someone, it is probably highly likely that the person doesn't know what Lymphoedema is. We really want to highlight that Lymphoedema is a condition that has no cure and that It's Cool to be Kind and that it is important to understand that the person who has Lymphoedema certainly needs family and friends to be concerned yet supportive.


Question: What tips do you have for those hosting their own Iced Tea Party?

Penelope Sanderson: We are encouraging people that are hosting an Iced Tea Party to go to the website: www.lymphology.asn.au and register for an Iced Tea Party and get together friends, family and people in the community to share Iced Tea and ask the group to bring along their favourite recipes for Ice Tea and bring along little cakes, to eat with the Iced Tea; on the website we have some absolutely delectable blue cupcakes. We want people to raise money, even a gold coin, towards research because Lymphoedema is a condition that hasn't had a lot of research, it certainly has had some research but there is a lot more that we need to know about the condition and there is a lot more that we need to understand about how to treat Lymphoedema. It is vitally important that there are funds raised for research particularly in Australia.

Currently we have done some fantastic research on exercise and Lymphoedema in Queensland and Sydney. A lot of the members of the LAL are currently doing research, but we do need funds and we need the community to understand that this is an area that needs their support.

The idea of drinking Iced Tea is because staying cool is pretty important for people who have Lymphoedema because heat tends to impact on their condition.


Question: Will you be hosting your own Iced Tea Party?

Penelope Sanderson: Yes! We are having a couple of events for LAL. One of which is a Boost and Brunch which we have been doing for a while and we certainly will be having Iced Tea and iced cakes. The Boost and Brunch is for young women who have Lymphoedema and it is about helping them boost their confidences and encouraging each other.


Question: How can people donate, if they aren't hosting or attending a Iced Tea Party?

Penelope Sanderson: People can donate directly to Lymphoedema by going onto the website www.lymphology.asn.au. You certainly don't have to have your own party to donate to Lymphoedema.


Question: What is your fundraising goal, this year?

Penelope Sanderson: We don't have a set goal but we'd like to be raising as much as possible, this month. Our goal is not just raising money but helping the community to understand about Lymphoedema and coincidently it does affect many more women than it does men; this may be women who have had breast cancer but it also affects more women generally in terms of the lymphatic system not being adequate to transport that lymph around the body. While we do see men with Lymphoedema from different conditions we do see a lot more women and quite a lot of young women in their teens and 20's.


Question: What message are you hoping to promote throughout the National Lymphoedema Awareness Month of March for those in the high-risk groups?

Penelope Sanderson: We want those in the high-risk group to understand the signs and symptoms so that they seek help early. Some of the problems in the past have been that people haven't really known about the condition, they have lived with it and it has got worse and they don't seek help until it's quite severe and has caused infections or they've been admitted to hospital. What we want them to do is to know the signs and symptoms of Lymphoedema, which are on the front page of the website www.lymphology.asn.au.

If they experience any changes or they have any concerns about swelling, they need to see their doctor and if their doctor thinks they may have Lymphoedema they need to seek the advice of a Lymphoedema practitioner.

Question: How does the Australasia Lymphology Association hope to overcome the lack of community awareness of Lymphoedema?

Penelope Sanderson: We certainly will be making March, every year National Lymphoedema Awareness Month and we hope to raise a lot more awareness about the condition and have the National Lymphoedema Awareness Month as a bigger event, each year in hopes of overcoming the lack of community awareness. We don't want people to ask 'What is Lymphoedema?' we want people to say 'yes, I know all about Lymphoedema'.


What is Lymphoedema?
Lymphoedema can affect people of all ages - from birth to old age. There is no cure. It occurs when the lymphatic circulation fails to function correctly and usually affects the limb(s) and may also affect the trunk of the body, breast, head and neck or the genital area.

The condition causes excessive amounts of protein-rich fluid to accumulate in one or more areas of the body causing swelling which can be extreme, distressing, debilitating and life-changing. While there is no cure, early diagnosis and management by an ALA accredited practitioner can reduce the impact of the disorder for sufferers.

All forms of lymphoedema can worsen with time so early diagnosis and treatment to manage symptoms is critical to minimise the progression of the disorder, limit complications and the impact it has on the patients' health and lifestyle.

Why is the Lymphatic System Important to Health?
The lymphatic system is one of the most important systems in the body. It consists of a network of vessels and nodes that transports lymph fluid from the body tissues back to the bloodstream. Its purpose is to maintain a balance in the volume and protein concentration of the extracellular fluid in the body and importantly, assist the immune system in destroying pathogens and removing waste products from the body.

What Causes Lymphoedema?
Lymphoedema may arise when the lymphatic vessels or nodes have been damaged or were not formed correctly at birth. There are two forms of lymphoedema and sometimes both forms may occur together.

I. Primary Lymphoedema
At birth, approximately one person in every 6000 will develop Primary Lymphoedema. Primary Lymphoedema is a condition caused by abnormal development of the lymphatic system and may be associated with other congenital abnormalities/syndromes. It may be present at birth, develop at the onset of puberty or, it may not become apparent for many years into adulthood. In primary lymphoedema, often no triggering factor can be identified.

II. Secondary Lymphoedema
Secondary lymphoedema is the most common form of the disorder. It can develop after part of the lymphatic system is damaged and may occur as a result of cancer treatments including the surgical removal of lymph nodes, radiotherapy to lymph node or, with the progression of disease. The onset of lymphoedema may occur at any time - within months of the damage to lymph nodes or their removal, or years later. The risk of lymphoedema remains life-long.

Secondary lymphoedema may also arise from other forms of damage to the lymphatic system including trauma and tissue damage, venous disease, immobility and dependency, factious - self harm, infection such as cellulitis and obesity, lymphangitis due to fungal, bacterial, and parasitic infections, insect and spider bites.

In the sub-tropical areas of the world, Lymphatic Filariasis is a major cause of lymphoedema when parasitic filarial worms are transmitted through mosquito bites. The parasites lodge in the lymphatic system causing destruction of the healthy vessels and nodes, resulting in lymphoedema. More information can be found on the WHO web site: www.who.int



The Impact on People Living with Lymphoedema
Because lymphoedema is a chronic life-long condition, it often has a significant negative impact on people's lives because it limits the ability to function in every-day activities and; dealing with the day-to-day demands of self-management of the disorder, can have a dramatic impact on patients' lives.

For people with Secondary Lymphoedema, who have survived the cancer journey only to be faced with a life-long chronic condition can be devastating? It can alter body image and restrict movement impacting lifestyle activities. Without adequate support and treatment, the effect on a patient's psychosocial and emotional health can lead to depression and anxiety, impacting on their overall quality of life.

Living with lymphoedema can also have a significant financial impact on the patient. Compression garments that are professionally prescribed to control the condition are expensive, and need regular replacement. They are not covered by Medicare and are only minimally reimbursed for those patients with private health insurance. Patients seen by public hospitals face long waiting lists, and short-staffed allied health departments that struggle to cope with the chronic needs of these patients.

While lymphoedema cannot be cured, it can be improved and managed with appropriate intervention to minimise the impact the disorder has on the person's life.

The Incidence of Lymphoedema - Who's Most At Risk?
Secondary Lymphoedema is the most common form of the disorder affecting a range from 20% to 66% of Australians who have been treated for some cancers.

According to The National Breast and Ovarian Cancer Centre (NBOCC), now Cancer Australia, following a review of research on Secondary Lymphoedema, "conservative estimates suggest that 20% of breast, genitourinary, gynaecological, or melanoma survivors will experience secondary lymphoedema. More specifically, the incidence of secondary lymphoedema associated with vulval cancer is estimated at 36-47%, breast cancer 20%, cervical cancer 24% and melanoma 9-29%, Prostate - 25-66%. The incidence of lymphoedema following sentinel lymph node biopsy (SLNB) is estimated to range from 4-8%.

Research indicates that the incidence of secondary lymphoedema is two to three times higher in women than in men.

Risk Factors for Developing Secondary Lymphoedema
Those most at risk of developing Secondary Lymphoedema are patients treated for cancer where the lymph nodes are removed or damaged as a result of treatment - A life threatening illness is replaced with a life-long distressing and debilitating condition.

Any major damage to the lymphatic system causes a life-long risk of lymphoedema. Key risk factors include; the extent of surgery, lymph node dissection and radiation treatment, trauma, infection (cellulitis & fungal infections), wounds, increased body mass index (BMI) and immobility.

The stage, location and severity of lymphoedema, together with the individual circumstances of the patient, play a vital role in managing the condition.

Precautionary Measures - Those at Risk Need to Know The Early Warning Signs!
Those most at risk of lymphoedema NEED to know the early warning signs and seek early diagnosis and treatment by a qualified lymphoedema practitioner which can significantly reduce the risk and severity of the impact the disorder has on the patient.

Early warning signs 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 more obvious at the end of the day

Many conditions may cause similar symptoms however, if early warning signs are experienced, other possible causes of the swelling should be excluded. If lymphoedema is suspected, referral to an ALA accredited lymphoedema practitioner is recommended. Visit the National Lymphoedema Practitioners Register to locate a practitioner: www.nlpr.asn.au

Why is Early Diagnosis Critical?
There is no cure for lymphoedema. It is a progressive disorder that can have a devastating impact on patient's lives. However, if diagnosed and treated early by an ALA accredited practitioner, the extreme swelling can be controlled and reduced, infection prevented and the range of movement of the affected area can be improved to limit the extent of the disorder and the impact it has on the life of the patient and their family. Bioimpedance spectroscopy is now commonly used by therapists to detect lymphoedema in its subclinical stage, even before visible swelling can be seen. There is strong evidence that early detection using bioimpedance leads to more successful treatment outcomes for lymphoedema.

How Is Lymphoedema Diagnosed?
Lymphoedema usually develops in stages, from mild to severe and sometimes has an acute onset. An accurate diagnosis by an ALA accredited practitioner is essential to ensure appropriate therapy is tailored to suit the patient's individual needs. Diagnosis is determined from the clinical history and physical examination. Sometimes lymphoscintigraphy will be offered to confirm a clinical diagnosis of Primary Lymphoedema.

What Are The Health Complications That Can Arise From Lymphoedema?
Because lymphoedema is a progressive disorder, without early diagnosis and management by an ALA accredited practitioner, serious health complications can occur. Complications include infections such as cellulitis, lymphangitis, lymphadenitis, (in severe cases sepsis) and skin ulcers. Without appropriate, individualised treatment, lymphoedema swelling may progress making the skin prone to thickening and the development of fibrosis and other secondary changes.

People at risk of lymphoedema need to learn the early warning signs to avoid complications. For those diagnosed with lymphoedema, it is vital to be aware of the symptoms of infection and seek treatment at the first signs. In addition to their inherent danger, recurrent infections can further damage the lymphatic system and set up a vicious cycle.

Is There a Cure for Lymphoedema & How Can Patients Access Treatment?
There is no cure for lymphoedema. However, the extent of the disorder and the negative impact it has on patients can be minimised. Early diagnosis and appropriate treatment by an ALA accredited practitioner can prevent progression of the condition, reduce oedema, maintain improvement to the affected area, alleviate associated symptoms, prevent the risk of infection, increase function and improve the overall quality of life of lymphoedema patients.

The Australasian Lymphology Association (ALA) promotes best practice management as a holistic multidisciplinary approach provided by qualified, ALA accredited lymphoedema practitioners. An ALA accredited practitioner can assess the stage, location and severity of the lymphoedema, together with the individual circumstances of the patient to determine and apply the most appropriate management strategy that is tailored to suit the individual needs of patients.

The conservative treatment method termed Complex Lymphoedema Therapy (CLT), includes education, skin care, exercise, Manual Lymphatic Drainage (MLD), compression therapy and counselling. For further information about management and treatment options in lymphoedema management visit: www.lymphology.asn.au

Why Is Investment in Research of Lymphoedema Critical?
Lymphoedema is a poorly researched condition. Its incidence is often under reported due to missed diagnosis, and variations in definition and methods of measurement. Some aspects of lymphoedema management require more vigorous research to gain the empirical evidence that is necessary for effective practice. There are many research opportunities for those interested in the condition of lymphoedema; from genetics, to physiology, to health economics, and the effects of lymphoedema on physical and psychological health. The Australasian Lymphology Association is dedicated to supporting such research and works closely with tertiary institutions to promote best practice in lymphoedema diagnosis and management.

Who is the Australasian Lymphology Association (ALA)
The Australasian Lymphology Association (ALA) is the peak professional organisation promoting best practice in lymphoedema management, research and education in Australia and is committed to promoting the development of lymphology in Australasia.

Our vision is to make a difference in all aspects of lymphology. We strive to improve the management of those with, or at risk of developing lymphoedema and enhance communication between health professionals, educators, relevant authorities and government in regard to oedemas and lymphoedema.

The ALA's objectives are to:
I. promote awareness of the condition focusing on early intervention to reduce the physical and psychological morbidity
II. promote evidenced based practice in the prevention, detection, diagnosis and management of lymphoedema
III. encourage research in the area of lymphoedema, promote equality of access for all clients to assessment and management of the condition
IV. provide and promote a forum for the regular exchange of views and information in relation to lymphoedema
V. Inform and engage medical professionals in the need to recognise symptoms and promote treatment of lymphoedema
VI. Promote the need for early diagnosis of lymphoedema in general
VII. Promote understanding of the impact the disorder has on patients

The ALA is a public company limited by guarantee and registered as a health promotion organisation with charitable tax deductibility status. For information about managing lymphoedema or for more information about the ALA, please visit: www.lymphology.asn.au

The National Lymphoedema Practitioners Register (NLPR)
The NLPR is a public register of lymphoedema practitioners throughout Australia and New Zealand. The Register is produced by the Australasian Lymphology Association to ensure and maintain the standard of lymphoedema therapy in Australia.

The NLPR enables patients and GPs to locate practitioners with the confidence that those registered fulfil the accreditation and registration requirements of the Australasian Lymphology Association - the peak professional body, dedicated to promoting best practice in lymphoedema management, research and education throughout Australia and New Zealand. ALA accredited lymphoedema practitioner's work in a variety of settings including public and private hospitals, private clinics and individual practices. To locate an ALA accredited lymphoedema practitioner, please visit the National Lymphoedema Practitioners Register at: www.nlpr.asn.au

Interview by Brooke Hunter