We’veall heard the phrase over and over in the last few months; “These are unprecedented times”. In the process of navigating what our new normal looks like, we’re faced with unpredictability; what we still need to learn about the COVID-19 virus, and the unknown of what’s ahead. We worry about what the health, social, mental and economic impact will be around the globe in the short-term and in the long-term. The uncertainty in our lives right now, has been difficult for everyone to varying degrees.
Many people living with lymphedema are asking whether there are specific precautions for them. We’ve adapted an article from our UK friends at Lymphedema Support Network, which includes advice from experts on how to navigate the virus as a lymphedema patient. We also reached out to the lymphedema community to learn how you are being impacted and how you are coping. The inspirational stories we’ve received include the perspective of a CLF board member and doctor who contracted COVID-19 herself, a nurse with primary lymphedema who works on the front line in New York City, therapists who have adapted their practice to reach their patients remotely, and patients who are doing their best to adapt ways in which they manage their lymphedema. This new environment has challenged all of us to learn new technology and find innovative ways to reach and connect with people. I believe this will be sustained in the future and will improve accessibility to
lymphedema care and education.
We know that many of you are now working from home and are sitting longer at a computer or desk than you normally would. If you have lymphedema, this can present additional challenges, as it is important to remain active. Felicia Mitchell provides suggestions on how to make adjustments to your routine that may help.
Dr. Mehrara and Dr. Kokosis are doctors in New York City, who, despite this hectic time, still came through on their commitment to submit an article for our magazine. I first heard Dr. Mehrara present on the topic of obesity at the International Lymphoedema Conference in Rotterdam (2018), where the audience was impressed with his ability to make the complicated bidirectional relationship of obesity and lymphedema understandable for any level.
To augment this article, Dr. Keast brings us the Canadian perspective of obesity from his chart reviews within the clinic where he works. One astounding fact he shared recently is that most people with lower leg lymphedema have seven or eight co-morbidities. Treating these people with lymphedema is very complex.
In this heightened phase of scientific evidence—when relying on our scientists and researchers, it is appropriate that we educate ourselves on how to read research critically so we can distinguish between strong and weak evidence that supports so many decisions. We thank Dr. Rhian Noble-Jones for writing this timely piece that can help us decipher,
not only lymphedema research, but also what is being reported daily in the media during the COVID-19 pandemic. I echo her fitting statement that it is the scientists and researchers, along with front line health care workers, who are the true heroes during this crisis.
At this time I want to acknowledge our industry supporters. Without them the Canadian Lymphedema Framework could not continue their work, and in particular this magazine. This summer issue marks our 35th, and our supporters have been there from the beginning. We know it’s also difficult for them during this time to service their customers and get products to their clients. We thank them for finding unique ways of looking after us.
It is remarkable that despite the extraordinary circumstances, we had everyone pulling together to help get this issue out; not only on time—but well ahead of schedule. Authors, contributors, advertisers, sponsors, contributors, editorial board members, provincial affiliates, volunteers and our publisher—all came through for us. I thank them all from the bottom of my heart. We have also decided to offer free online access for this issue only—to readers around the world, who may find helpful COVID-19 related advice and some comfort in this issue.
Lastly, I want to personally wish everyone well through these uncertain times.
Stay safe. Stay healthy. Stay connected. Be kind to each other. LP
Publisher
Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates.
Editorial Board
Angela Dunphy
Mei Fu PhD RN FAAN
Pamela Hodgson PT
David Keast MD FCFP
Lori Radke PT CLT
Anna Towers MD FCFP
Editor
Anna Kennedy
Editorial Assistants
Nicole Boulet
Catherine Andrew
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Lymphedema is a major worldwide problem
afflicting over 200 million patients1. A common cause of lymphedema in the United States—and most developed countries—is cancer treatment. In these procedures, lymph nodes or lymphatic channels are injured during the course of cancer staging or treatment; in approximately 20-50% of patients, this injury leads to the development of lymphedema. While breast cancer treatment is the most common cause of cancer-related lymphedema in developed countries, this disease also occurs commonly in patients treated for gynecological or urologic cancers, melanoma, head and neck cancer and sarcoma. It is estimated that at least six million patients in the United States have lymphedema, and many are related to obesity itself. To put the scale of this problem in perspective, this number of patients is roughly equivalent to the number of Americans who suffer from Alzheimer’s disease and nearly six times the number of patients with Parkinson’s disease.
Obesity is a major risk factor for development of lymphedema
Researchers have identified a number of risk factors for lymphedema development. This research is useful for patient education and early intervention approaches; in some cases, risk factors are modifiable and can be changed to decrease the risk of disease development. Although there is debate about the degree of risk for some putative risk factors for cancer-related lymphedema—increasing age,
Dr. Babak Mehrara, MD, is the chief of the Division of Plastic and Reconstructive Surgery at Memorial Sloan Kettering Cancer Center in New York. His clinical interests include microsurgical oncologic reconstruction. He is also the principal investigator in his NIH funded laboratory studying pathophysiology and treatment of lymphedema.
Dr. George Kokosis, MD, is currently a microsurgical reconstructive fellow in the Plastic and Reconstructive Surgery program at Memorial Sloan Kettering Cancer Center. He has completed his surgical training at Johns Hopkins hospital. His clinical and research interests include surgical treatment of lymphedema and associated clinical and patient reported outcomes.
the use of adjuvant radiation therapy, the type of chemotherapy used for cancer treatment, among others—a large body of evidence supports the idea that obesity is a major risk factor for disease development2 In breast cancer survivors, studies have shown that obesity—usually defined as patients with a body mass index (BMI)>30— increases the risk of lymphedema by 3-400%3,4,5. Even gaining weight after surgery in otherwise thin patients increases the risk of lymphedema5,6. Along the same vein, a randomized-controlled-trial comparing patients with arm lymphedema who received nutritional consultation and support for 12 weeks versus patients who were simply given a pamphlet on weight loss measures, showed that active intervention resulted in weight loss and also significantly improved arm swelling7. These studies are important because they show that obesity and lymphedema are related and that dietary modifications or behavioral changes are an important adjunct to the treatment of the disease.
The major question that our laboratory and other researchers have sought to answer is: how does obesity increase the risk of lymphedema? This is important because understanding how obesity and lymphedema are related can help us develop novel methods to treat or prevent the disease. It turns out, that the interaction between obesity and lymphatic injury is not only complex but also bidirectional.
Evidence for the concept that obesity causes lymphatic dysfunction is derived from studies showing that some extremely obese patients— those with a BMI > 50–spontaneously develop lymphedema and limb swelling even without surgery or trauma8. Obese patients who do not have visible swelling in their extremities, have abnormal lymph node uptake and a decreased ability to transport radioactively labeled molecules from their tissues as compared with normal weight patients9,10
Laboratory studies using mouse models
have also helped shed light on the cellular mechanisms that link obesity and lymphatic function. Similar to the clinical scenario, we have found that weight gain resulting from a high-fat diet is inversely related to the capacity of the lymphatic system to remove fluid and immune cells from tissues and to the pumping of lymphatic channels. This is important because lymphatic vessel pumping is an important regulator of lymph movement and is thought to account for 70-80% of lymphatic fluid transport11. Obese mice also have leaky lymphatic vessels and this leakiness results in accumulation of fluid in the tissues. Fluid accumulation causes chronic inflammation around the lymphatic vessels, which, in turn, injures the lymphatic channels.
The good news is that the defects in lymphatic function in obese mice are reversible (at least partially) with behavioral changes such as weight loss or aerobic exercise. Obese mice that were placed on a more healthy diet not only lost weight but also had better lymphatic vessel pumping and decreased lymphatic leakiness12. In other studies, we showed that obese mice that underwent a six-week period of mild aerobic exercise (walking on a treadmill at a low speed for one hour per day) did not
lose weight but had significantly improved lymphatic function as compared with sedentary obese mice. Whether or not obesity-associated lymphatic dysfunction is reversible clinically is a topic of debate; a recent case report of a morbidly obese patient who underwent weight loss surgery and lost a substantial amount of weight did not show evidence of improved radio-nucleotide transport13. This may reflect the chronicity of clinical obesity or perhaps other, as yet, undetermined effects of chronic weight gain. Larger studies in this area should shed more light on this problem.
The most direct evidence that we have showing that lymphatic dysfunction causes obesity is the fact that chronic lymphedema causes fat deposition. Thus, while the early stages of the disease are characterized by fluid accumulation (that is why “pitting” in the skin occurs), the later stages of the disease result in fat deposition. This is the reason why bandaging and lymphatic massage are less effective in these late stages since fat is not compressible. In a sense, we can think of lymphedema as a form of “regional” obesity— thus, while some people have a tendency to accumulate fat in their love handles or
Obesity and lymphedema are related and dietary modifications or behavioral changes are an important adjunct to the treatment of the disease.
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other areas, patients with lymphedema have a tendency to accumulate fat in their lymphedematous limb.
Laboratory studies also support the idea that lymphatic dysfunction favors fat deposition. For example, mice with genetic abnormalities of the lymphatic system become obese as adults even when they are fed a low-fat or healthy diet14. Lymphatic fluid placed on fat cells in a petri-dish causes the fat cells
to accumulate fatty acids and expand in size. This effect is related to changes in fatty acids that activate the fat cell to accumulate lipids. In other words, lymph makes you fat! Other studies have shown that lymphatic injury results in chronic inflammation and that this inflammatory response causes adipocytes to grow in size and accumulate fat15,16. This chronic inflammation is important since it can cause many of the genetic changes that are
noted in diabetes and obesity and can, as a result, modulate how tissues respond to insulin and other growth factors17
It is clear that obesity and lymphedema are critically linked and that this relationship is bidirectional (Figure 1). The take home message of this article is that for most patients with lymphedema, behavior changes—weight loss, aerobic exercise, and resistance exercise— can improve their lymphedema symptoms. It is also possible to lower the risk of developing lymphedema by maintaining a healthy life style, a healthy balanced diet, and avoiding weight gain. Future clinical and laboratory studies will identify how obesity injures the lymphatic system and how lymphatic injury modulates fat cells. This knowledge will help us develop more targeted treatments that can help patients who suffer from lymphedema. LP
A full set of references can be found at www.lymphedemapathways.ca
Thisyear has been unique at every level. Our fear and curiosity of the mystery virus, COVID-19, will remain in our memories for many reasons. News outlets and social media are trying to make sense of a flood of information. We are trying to separate an everchanging truth, from myths and ‘fake news’. The situation has highlighted, how vulnerable those with ‘underlying conditions’ can feel; the disparity of salaries (or ‘perceived worth’) between soccer players, celebrities and nurses, physiotherapists, clinical researchers; and of course, the compassion and resilience of our healthcare teams. However, the international collaboration in research during the pandemic has been wonderful to witness, as has the notion that political decisions should be ‘guided by the clinical evidence’. It has brought research vocabulary into the everyday language of clinicians and journalists alike. The astounding swiftness in ‘expedited ethical boards’, ‘accelerated assessments’ and ‘rapid reviews of the evidence’ has been, at times, awesome.
A particular product of the pandemic has been the Rapid Review. Over the course of 2-3 weeks there appeared rapid reviews of COVID-19 in relation to healthcare roles (e.g. critical nurses, respiratory physiotherapists), particular pathologies (e.g. asthma, diabetes) and particular contexts (e.g. Critical Care, Palliative Care). Rapid reviews are particularly popular with policy makers, as they are quick enough to respond to in situational or time sensitive issues. The process aims to be rigorous and transparent but in order to reduce the time taken, compared to a full systematic review, the focus may be limited in breadth or depth; or the team has to be very large (requiring greater funding). They may include a ‘review of reviews’ (see later) and sometimes curtail the review and synthesis stages2, hence increasing the risk of bias. For a lymphedema-based example, see a rapid review of compression wraps (Table 1).
This article aims to set the Rapid Review in relation to other types of evidence reviews and briefly show how different types of review have informed aspects of our lymphedema field. Regardless of COVID-19, for anyone interested in lymphedema research, the last few years have been notable. The amount of research directly relating to lymphedema has
grown each year. At the same time, there is increasing realization that related research— in genetics, adipose tissue, inflammation and pharmaceuticals—might completely change the way we understand and manage lymphedema. In this ocean of information there is, quite rightly, an expectation that health care professionals (and the academics who teach them) will remain aware of the latest evidence to support clinical practice. Patients and their families are becoming increasingly interested and aware of medical news announcements, through both traditional and social media streams. The COVID-19 pandemic seems to have heightened this expectation.
Despite an acknowledgment that medicine has always been a mixture of science and art3 we like to think that in the 21st century our understanding of underlying ‘facts’ is improving. The assumption of a review is that there is a depth and breadth of research to be analyzed. However, the reality is that there are two major issues influencing the amount of research in a medical field: funding and bias. It is difficult to access research funding to investigate many chronic pathological conditions. They are not as emotive or frightening as life-threatening disease and pharmaceutical or advanced technology companies sometimes struggle to see the investment potential. In relation to bias,
medical science has always had its biases (intentional and unintentional) but amplifying this bias is increased sophistication in the use of sound bites and online ‘baiting hooks’, which mislead people with fake news. We would all like to find a simple cure. Subconsciously, people search for confirming evidence, or listen to information that confirms existing practice rather than that which requires a change in behaviour. As busy people, we are very glad if someone else has reviewed the evidence for us and a review by others can seem more objective. So evidence reviews have become popular. However, how do we remain critical when an article is called ‘a review of evidence’?
There are many types of review. Each review type has its strengths and weaknesses, and appropriate purpose6. In essence, each one has four stages: Search, Appraise, Synthesize and Analyze2. The difference between each review type is how each of these stages is conducted; although, as Grant and Booth (2009) found, the boundaries are fuzzy. Nevertheless, understanding the process undertaken helps you to understand the level of rigour and therefore how much value to place on the review that you are considering in relation to your intended use.
The gold standard and probably the most well known type of review of evidence is the Systematic Review, such as conducted for a Cochrane Review (https://canada.cochrane. org/). It follows a very rigorous process for each stage4. It requires a pre-determined protocol and a team of researchers rather than a lone researcher/student. It seeks to draw together all known knowledge on a topic area. Traditionally it uses a hierarchy of studies where randomized controlled trials are considered supreme but recently a wider range of study types have been included. The disadvantage is that it takes a long time and can be costly. An example paper is given in relation to the breast-cancer related lymphedema (Table 1).
The most technically demanding of reviews is the Meta-analysis. There are very few of these in the field of lymphedema as its purpose is to combine, statistically, the results of several quantitative studies that are similar in design. A limitation is finding sufficiently similar studies. It can be very useful where there are many small studies with insufficient statistical
power on their own to influence practice. An example in relation to the incidence of arm lymphedema is given (Table 1). The qualitative research equivalent would be a Qualitative Evidence Synthesis. In contrast to the summative nature of the previous, this process looks for themes/constructs across qualitative studies and attempts to give an overarching narrative or new theory.
Post-graduate students learn research skills by conducting a Systematized Review toward their PhD. This is a smaller version of the systematic review. The process mimics that of the systematic review but on a narrower or more limited scale, typically due to time or the number of people involved. An example is given in relation to inter-professional education (Table 1). A slightly simpler process again is the Literature Review that might be undertaken for a journal article or chapter
Type of review Example papers
Systematic review
in a textbook. It looks for what is known or accomplished in a topic, sums up, and avoids duplication of research but it may be of limited breadth and therefore can hold bias. An example is given in relation to lymph node transplants (Table 1).
https://doi.org/10.1002/14651858.CD011433.pub2 and http://epubs.surrey.ac.uk/842664/
Systematized review https://www.ncbi.nlm.nih.gov/pubmed/29966884
Literature review https://journals.lww.com/annalsofsurgery/Fulltext/2015/05000/ Vascularized_Lymph_Node_Transfer_for_Treatment_of.31.aspx
Overview https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5497342/
Mapping review http://eprints.gla.ac.uk/50066/1/50066.pdf
Scoping review https://www.gov.scot/publications/smasac-short-life-workinggroup-lymphoedema-lymphoedema-care-scotland-achieving-equityquality/pages/5/
Rapid review http://www.medidex.com/evidence-based-procurement-boardebpb/864-compression-wraps-for-lymphoedema-rapid-reviewfeb-2017.html
State-of-the-art review https://www.ncbi.nlm.nih.gov/pubmed/30248726
Critical review https://www.cancernurse.eu/documents/ EONSEuroPEPLymphoedemaCJONArticle.pdf
Meta-analysis https://www.sciencedirect.com/science/article/pii/ S1470204513700767?via%3Dihub
Qualitative evidence synthesis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4153404/
Mixed methods review/ https://njl-admin.nihr.ac.uk/document/download/2011415 Realist review
Patients and their families are becoming increasingly interested and aware of medical news announcements, through both traditional and social media streams. The COVID-19 pandemic seems to have heightened this expectation.TABLE 1
A review which is entitled ‘an Overview of…’ takes a big picture approach. It usually describes the type of literature on a subject or gives a broad summation of a topic area. It can be useful for newcomers or to understand a different field e.g. surgical management of lymphedema (Table 1).
It is important to recognize that a review that is not conducted systematically, can only give an estimated (near truth/best guess) answer. Arguably, the further away from the Cochrane process, the more likely it is to
reach biased or wrong conclusions. However, the rigour, timescale and investment required of a full systematic review is not always possible and may not be pragmatic for policymakers; nor are they always required. Alternative review processes attempt to balance the need for rigour and relevance, with the reality of funding and human resources. Hence the rise of the rapid review in the rushed context of COVID-19. A middle ground between the haste of rapid reviews for policy and the academically thorough systematic review is ‘middle-ground research’5 or Mixed-method/ Realist Review. This process attempts to bring together the ‘what works’ of quantitative evidence with the ‘how and why it works’ of qualitative studies to give us a better understanding of ‘what works under what circumstances’. There is a great deal of interest in this field of research, particularly as we enter the era of Realistic Medicine8. Realist review assumes a high level of stakeholder involvement and an element of negotiation between reviewers and stakeholders7
Other reviews have specific purposes but can appear very similar to those above:
n Mapping Review: Useful for identifying gaps in the evidence or setting a context. Used when little is known of what currently exists. Quick, broad descriptive picture; might oversimplify.
n Scoping Review: Provides a quick first assessment of quantity and quality of literature on a subject; but is still systematic, transparent and replicable.
Some reviews are very different in their perspective however. A State-of-the-Art Review addresses current matters, reviewing only recent literature. It can be good for gaining a vision on what is contemporary in a field but it can also distort the view. For example, when a topic has been extensively researched in the past and may be considered ‘sated’ (e.g. compression bandaging or not fashionable e.g. elevation of the limb), then that topic may not have been recently researched and therefore not published within the recent timeframe.
Another very particular type is the Critical Review. This presents, analyzes and synthesizes material from diverse sources in a conceptually new way (a new lens). It may bring together many schools of thought in a new way or aim to ‘take stock’ from a particular viewpoint. Important to note however, is that the breadth of ideas may be more important than quality of literature included e.g. a critical review of international contribution to research may focus more on the variety of countries or the range of professions involved.
Tools such as those freely available from the Critical Appraisal Skills Programme (CASP) can be very helpful (https://casp-uk.net/ casp-tools-checklists/). When reviewing any research, the first task is to identify the type of research – quantitative, qualitative or mixed research. This helps you select the appropriate template. For systematic reviews, there are ten questions under three broad headings to consider:
n Are the results of the study valid?
n What are the results?
n Will the results help locally?
The beauty of using a tool such as the CASP for systematic reviews is that it guides your thinking. For example, the first question asks whether the review addresses a clearly focused question. It then suggests that you consider:
n The population studied
n The intervention given
n The outcome considered
Most questions are responded to with a yes, no or ‘can’t tell’. The latter is just as important in considering how much weight (importance) to give the systematic review. It should not be considered a scoring system however, and ultimately you will need to make a value judgement based on your critique.
All reviews start from an attempt to answer a question or solve a mystery. It is worth considering first whether the question itself is valid
for the time and context you are in. All reviews contain some truths; consider what risks are dependent on the interpretation of those facts. There are some truths in the stories of the red dragon of the national flag of Wales and the Loch Ness Monster of Scotland yet they are both myths. In the same way, medical facts with corroborating evidence of the past have subsequently been shown to be incorrect; often because a fact has been taken out of context and then confirming bias has played its part.
The crucial thing is that the review you are reading, or considering doing yourself, is fit-for-purpose. Consider the purpose, the potential impact, the intended audience and the reality of the resources (time, skills, people used/available). As we increasingly contend with stakeholders, health service agencies and grant-holding bodies we should understand what level of review is appropriate for our time and money to be used efficiently. LP
Obesity rates in Canada have been increasing. Rates reported by Obesity Canada, which combines overweight and obesity categories, were 49% in 1978, 59% in 2004 and 64% in 20171. Canadian statistics use the Body Mass Index (BMI) system calculated from height and weight in kg/square metre (see Table 1).
TABLE
Canadian
III
According to Stats Canada, obesity rates (Class I and above) from actual anthropomorphic measures steadily increased from 23.9% of the population in 2009 to 28.1% in 2015 but remarkably decreased to 26.9% in 20172
There are many different Stats Canada reports, some from actual height and weight measures and others from self-reported measures. Childhood obesity rates have also recently been reported as lower. Overweight and obesity
combined reported by Stats Canada in 2015 as 61.3%. More than half of these were classed as overweight. At that time 782,500 were reported as morbidly obese. These figures were from measured data. Canadian Class III obesity rate was reported in 2005 at 2.1% climbing to 4% in the 2016 census. Rates have been reported as stabilizing. The lymphatics are intimately associated with arteries and veins and function must be considered together. The lymphatics mobilize all excess tissue fluid. Lymphatics also have an immune function and a key role in fat metabolism. Lymphatics absorb fat from the digestive system and transport it as chyle to the circulatory system. It is known that lymphedema and fat metabolism are linked3 Obesity can lead to increased lymphatic dysfunction and subsequent inflammation. This is linked to increased fibrosis of the tissue and increased adipose tissue deposition. The fat cells deposited are different from normal fat cells, being much larger. Mechanisms are a subject of much research. There is an association between obesity and lymphedema. In 2015 a review of 326 lymphedema patients treated at the Parkwood Wound Management clinic, 45% were found to be morbidly obese4. It is conservatively estimated that over half those with a BMI ≥ 40 will have lymphedema and if BMI ≥ 50 the
By David Keastrisk rises to 100%. Using this figure, the CLF estimated that the number with lymphedema due to obesity is 570,000 in Canada.
In 2019, patients with lymphedema attending two Canadian clinics were reviewed in independent studies to determine levels of obesity. Shallwani et al reviewed 178 patients suspected of having lymphedema referred over a two-year period to the McGill University Health Centre (MUHC) Lymphedema Clinic5. Patients mostly had upper extremity lymphedema and were cancer-related. BMI data demonstrated that 39.1% were overweight, 21.9% had Class I obesity, 6.7% Class II and 10.7% Class III. Also, in 2019 the Parkwood Institute Chronic Wound Management and Lymphedema Clinic undertook a chart review of all lymphedema patients seen since 2011 to determine levels of obesity. Patients mostly had lower extremity lymphedema of non-cancer etiology. Comparison of the two studies is shown in Table 2. The results
Total Charts 429 735
BMI recorded 178 478
No BMI 251 257
Average Age 61.0 68.9
Male 15.7% 43.0%
Female 84.0% 57.0%
are compared in Table 3. The characteristics of the patients attending these two Canadian clinics were compared in the recent Canadian LIMPRINT paper as shown in Table 46. The data for the characteristics of the MUHC patients are from a previous study by Shallwani and colleagues7 and those of the Parkwood patients from a study by Wang and Keast4
When the overweight and obesity categories are combined, the results are greater than the Obesity Canada data of 64% in 2017 for
the general population, with the MUHC clinic at 78.4% and the Parkwood clinic at 86.7%. The patients primarily with upper extremity lymphedema tend to be overweight whereas those with lower extremity lymphedema tend to have Class III obesity. Class III obesity is associated with increased rates of co-morbid conditions such as diabetes and heart disease. Lower extremity patients are also at higher risk of cellulitis. Class III obesity rates in Canada doubled from 2005 to 2016. If the rate continues, we can expect to see increased rates of the complications, including increased rates of secondary lymphedema.
Conclusion
Secondary lymphedema related to the growing rate of Class III obesity is under-recognized and undertreated. The treatment of the lymphedema itself as well as the co-morbid conditions constitutes a significant burden on the health care system. Management of these complex patients is a significant challenge. Not only does the lymphedema need to be
TABLE
managed, but also the co-morbid conditions. Better nutrition, exercise and weight loss strategies must also to be employed. LP
A full set of references can be found at www.lymphedemapathways.ca
This strain of coronavirus is a new one and scientists do not yet know all there is to know about it, so while these common-sense advice points will always be helpful, it is important that you keep up to date with the advice being given by your local government and how it might affect you personally. These suggestions have been produced using the most up to date advice available and are not intended to replace or supersede advice you may have been given from your health care advisor, your local healthcare, or government.
QDoes lymphedema put me more at risk for COVID-19?
Medical experts contacted by the Lymphoedema Support Network (LSN) advise that in nearly all cases lymphedema alone does not make one more susceptible to the coronavirus. The only exception would be those very rare primary lymphedema patients who have extensive lymphatic abnormalities involving the chest (i.e. lungs), and have generalized immune deficiency.
QAre there any extra precautions I need to take?
Those with lymphedema should take the same precautions as others although this may be more of a challenge if you wear a compression glove as part of your treatment. Everyone should:
• Follow the latest government guidance, which can be found, on the links below, or by listening to televised/radio reports.
• Wash your hands frequently during the day with soap and water for at least 60 seconds.
• Use hand sanitizer gel with at least 60% alcohol content if hand-washing facilities are not available.
• Keep your hands well moisturized as frequent washing can make the skin dry and cracked (which may lead to cellulitis).
• If you use shared equipment such as keyboards, telephones etc. wipe them with antibacterial wipes between users.
• Make sure you, and the people around you, follow good respiratory hygiene. This means covering your mouth and nose with a tissue or your sleeve at your elbow if you cough or
sneeze; then disposing of the used tissue immediately and washing your hands.
• Get into the habit of not touching your face, mouth, or eyes.
• Practice social distancing guidance as laid out by your country government (links below).
QWhat can I do to keep my compression sleeve or glove clean?
• Most of the compression garment manufacturers advise following the washing instructions on your garment but making sure that you wash your garments each day.
• We are told that antibacterial hand gel will not damage garments if it is on the skin.
• Most garments can be washed in your washing machine at 40O C (104F) on a gentle wash and then dried on the gentle cycle of your dryer. If your garment cannot be tumbledried then air-dry it thoroughly before use.
• Most garments will stay in peak condition for over 100 washes but putting them in a net washing bag can protect them further.
QHow can I protect my compression garments outside the home?
• You may choose to buy disposable plastic gloves to wear over your compression glove or hand piece while you are outside the home. When you arrive at your destination remove the disposable glove by rolling it off your hand so it ends up inside out and throw it away. Then wash your other hand before removing your compression (this will stop your other hand contaminating the compression glove), wash your hands again and reapply your compression.
• You may choose to wear a disposable glove over your compression glove for longer periods of the day if you are in a job that requires you to wash your hands frequently. Please remember the glove is there to stop your compression glove becoming contaminated, it will not protect you from the virus. The virus can live on the plastic glove and be transferred in the same way as it can on your hand so the same rules apply—wash your hands frequently and change the glove often.
• Some people may find it a challenge to find a disposable glove to fit over their swollen hand. You may need to experiment with sizes and if you are unable to find one then talk to your lymphedema health professional to see if they feel it would be appropriate for you to modify when you wear your glove, temporarily.
• When not in your own home avoid using the part of your hand covered by your garment, if possible, and use hand sanitizer gel on your fingers as needed.
• Carry a spare compression glove/garment with you in a sealed plastic bag to use if you are worried your compression glove may have been contaminated. Put the dirty one in the plastic bag and seal it up until it can be washed, remembering to throw the plastic bag away.
QWhere can I get more information?
If you think you may have the virus please refrain from interacting with others and follow the current up to date advice given by your country government to seeking help.
n Canada: canada.ca/en/public-health/ services/diseases/coronavirus-diseasecovid-19.html
n United States: cdc.govcoronavirus/ 2019-ncov/index.html
n United Kingdom: gov.uk/coronavirus
n Australia: health.gov.au/news/health-alerts/ novel-coronavirus-2019-ncov-health-alert
This article was adapted with permission from the Lymphoedema Support Network in the United Kingdom to be relevant to our readers in various countries. We encourage you to view their unabridged document at www. lymphoedema.org or under references at www.lymphedemapathways.ca
By Felicia Mitchell
With so many cancer survivors working at home during the COVID-19 pandemic, we may need to assess how our shift to computer-based work affects limbs with lymphedema and make a few adjustments to the new routines to help ourselves out.
While I miss seeing students, the shift to teaching online during the COVID-19 pandemic has been fairly seamless. In fact, we interact often—just in new ways. Unfortunately, when you have lymphedema, teaching or attending meetings while hunched over a laptop for hours a day is not quite the same as walking around a classroom or sitting in an office. There has been more of a learning curve with my lymphedema than with online instruction.
My lymphedema is well controlled, so I was surprised to feel swelling in my arm after the first weeks of shifting energies from classroom to laptop. In an ideal world, that would mean I needed to get back in the pool. The pool, of course, is closed until further notice. Seeing a lymph drainage massage therapist could have been helpful, but that option is also out of the question. What could I do?
What could any of us do?
First, I realized that I have to move more often rather than just sit at my desk for hours. Stretching occasionally is important. It is possible to sit at a desk and raise your arms over your head in a modified tree pose. I recommend holding them out to the side and then pulling the arms up for hands to meet as if in prayer. This stretch also helps because, along with the lymphedema, surgery
gave me issues with my back and shoulder.
Second, do not just stretch at your desk. Get up and walk around at regular intervals, rather than sitting for an hour or more. I have reminded myself that at work when I worked in a classroom building, I took regular breaks. I might get up to make tea. I would walk downstairs to pick up mail, or scan something or ask the faculty secretary to process a form. I would walk to the administrative building to fill my stainless steel water bottle with purified water. At home, I have taught myself to get up and make tea or pour more water into my glass. I have made myself walk downstairs to do a load of laundry. Sometimes, I walk outside to collect mail and then walk back to my home office.
Third, do not forget to exercise in the middle of the workday, if possible. I realized soon into the transition to online delivery of instruction that I was missing my lunch hour walks with my walking buddy. At work, we keep each other focused on getting in our 2.6-mile loop around campus each day, pretty much rain or shine, preferring to walk and talk after eating a quick lunch at our desks. I found a substitute at home: a three-mile solitary loop around my “country block.” I can walk this quiet loop in an hour. The serenity helps as much as the exercise.
Fourth, although I cannot visit a massage therapist, I can do a self-guided massage that is kind to my lymph system. At the end of the day, this helps. Fortunately, the directions for doing this massage have been taped to my bathroom mirror for years, just in case I need to remind myself how to do the massage and deep breathing. If your physical therapist has shared appropriate instructions for your lymphedema, self-drainage lymph massage might help.
Do not just stretch at your desk. Get up and walk around at regular intervals, rather than sitting for an hour or more.
Fifth, look at that laptop and decide if it is ergonomically appropriate for your arm. At work, I use a desktop with a keyboard. At home, I began to notice how I rested my arm on the edge of my laptop. I was not lifting my arms but instead inhibiting circulation. I had to teach myself to lift my hands a bit more, as with a traditional keyboard, which meant adding a pillow to my office chair. Now is the time for workers who are telecommuting to be kind to their bodies. LP
Reprinted with permission from Cure Magazine – April 2020.
Personally surviving COVID-19
I am a pediatric dermatologist, and part of an amazing team looking after children and adolescents with lymphedema at the CHU Sainte-Justine in Montreal. We have been hit terribly hard by the COVID-19 virus, in spite of the quarantine and social distancing. It is difficult to witness the number of patients dying and scary to see health personnel who were exposed to the virus, die also. Fortunately COVID-19 does not hit harder if you have lymphedema.
I contracted it myself in early March, before we realized COVID-19 was in the community. It was most likely a patient that had travelled south who inadvertently gave it to me. My symptoms included coughing at night, sore throat/laryngitis, plus sinusitis for two weeks before diagnosis. Then night-time fevers, chills and extreme fatigue set in, along with nausea with an 8kg weight loss, for one more week. Two weeks after my positive test, I was happy to receive two negative tests, so I could return to work. My husband got it too. Surprisingly, he tested positive at a time when he had felt great for two weeks. That was a lesson for both of us, as it meant COVID-19 can be contagious, even in people who are healthy. Most of us do well, get through this illness, and hopefully have some immunity going forward. One must be careful if there are other underlying health conditions, or if elderly.
We had to cancel our lymphedema clinic visits for now, although any urgent case can be seen in person. We have started teleconsultations using photos for virtual visits. However it is not the same, and I really miss seeing my patients. I think teleconsultation will be here to stay and may be helpful for follow-up visits in the future. We are being
catapulted into learning modern techniques of sharing information.
I wish you courage and common sense to get through this tough time. Keep up the social distancing, masks when out of the house, hand washing and sanitizer. Take time to meditate, enjoy the spring sunshine, and the little things, those we love and forget to tell enough. Like the pregnant robin that greeted me this morning in my back yard, life is amazing!
Dr Catherine McCuaig Montreal, Quebec
I’m an ovarian cancer survivor who developed lymphedema in my left leg and groin eight years after my surgeries...Surprise. While studying yoga, I discovered how to bring mindfulness to my morning MLD sessions. Bit by bit, as I made space and time to practice, my entire relationship to this daily chore and to my imperfect body has changed. The chore now feels like a treat, because I tend to my creature comforts; warm room, dim light, privacy. My body feels pampered and well tended. My mind, more still, less disturbed by anger, sadness, and worry.
Lisa McKhann Duluth, MN USAClosing my practice in the middle of March to help to contain the virus has been hard financially, but worse knowing that my work is vital to my lymphedema patients. On Easter Sunday I received pictures from two different patients of their limbs that were red and they said they were hot. It broke my heart to tell them, “You need to go to emergency in case this is cellulitis and you need IV antibiotics.”
I realized then that patients not getting their treatments and lymph fluid lying stagnant in their tissues was a true risk for their lives and how I could keep them out of the hospital exposed to possible COVID-19.
I have been working with our College, writing patient case reports on how their risk of infection could put them in the hospital. I reached out to my first top five cases telling them what I was doing to try and get them treatment. Just the fact that I was fighting for them meant the world to them. It lifted their spirits.
Recently, I have been granted to see, with strict protocols, my first five patients. The gratitude they have had for me as I meet them masked at the door of my clinic to take their temperature and sign consent for treatment was heartfelt. They are joyful knowing that they are being cared for again.
I know this is a hard time for our patients. Slowly getting to see them with extra safety protocols in place to protect us all, is hopeful and therapists can’t wait to get back to our flocks. It was a good week! I have now applied for the next five cases and I wait patiently.
Grace Dedinsky-RutherfordDirector Vodder Schools-International Ltd North Vancouver, BC
I peel off the clothes I’ve driven home in and I drop them in the wash with my scrubs. Gone are the days of wearing scrubs in the home. I turn the water to hot and think, “What about my compression socks?” Working as a pediatric nurse practitioner in an
emergency room in New York City means that I’m constantly exposed to COVID-19. I’ve read about how to decontaminate myself to avoid transmission to my family. I wear PPE, change before leaving the hospital, shower, and wipe everything down with disinfectant. But what about my compression garments? Did COVID find its way to my ankles while I was assessing my patient with fever and cough? Did I do enough to protect myself? My patients? My family?
I look down. These stockings are so worn. I’m overdue for new ones, but no one is doing measurements. I don’t want my primary lymphedema to get worse, but the pharmacy where I’ve gotten them in the past is no longer fulfilling custom orders. Will they last longer if I wash them every day? Or should I not wash them to preserve the elasticity? Hot water will certainly degrade them sooner, but at least it’s more likely to kill COVID. I turn on the cold water and hope I’m making the right decision.
Jennifer Nahum Children’s Hospital at Montefiore
The Bronx, New York
In the midst of COVID-19, closed clinics left clients unable to access hands-on care. Our patients felt abandoned and anxious about how they would manage. We quickly implemented virtual care for lymphedema management. Our strategy was to reach as many of our existing clients with “check-in” visits and self-management plans; and to provide an opportunity for newly diagnosed and lymphedema patients from across the province to access our care team remotely. After an initial learning curve of clients using new technology, we were quickly able to give them effective and valuable self-management plans. We demonstrated how to perform self-manual lymphatic drainage, exercise, taping and bandaging techniques. We viewed this as essential to preventing flareups and helped put control of lymphedema in the hands of our clients.
An example of how we were able to help patients from across the province was a new client from a small town over 250 km from our location. We taught the family how to measure for garments and connected them with a fitter in their area to order the right garments. In normal circumstances, even before COVID-19, this client would likely have never been able to access lymphedema care and compression garments. We also started a free weekly webinar series to support people with lymphedema or those newly diagnosed. This crisis quickly tested all healthcare professionals to be able to adapt. The ability to pivot to a new way of delivering care will offer opportunities to help patients even when this crisis is over.
Ann DiMenna Clinic Director, Markham Lymphatic Centre Markham, OntarioThe COVID pandemic came suddenly and has literally disrupted all our lives, including my own personal care habits. I’m currently unable to work, had to stop my dragon boat sessions and visits to my gym. My basement has been converted to a little gym, whereby I’m doing yoga and Zumba classes online for three hours per week. Of course, it is much more enjoyable to go in person to the gym, or paddle on the lovely Lachine Canal, but the satisfaction and the sense of well-being is the same, along with the control of knowing you are still able to do exercise and manage your lymphedema. Daily I see progression, and won’t forget where I started from. It’s giving me hope and filling my heart with excitement, so please, don’t give up either! My life and habits have changed because of the pandemic, just like my lymphatic system did when I first got diagnosed. We can’t always control what happens in life, but we can learn to adapt. Like finding new ways to exercise, just as my lymphatic system found new channels to redirect the lymphatic fluid. Trying to find the perfect formula is the key to managing my lymphedema, but with the proper
knowledge, and guidance from the right health care professionals, I did it! I’m not afraid of the challenges COVID brings, as I’ve done it before, I will do it again, no matter what circumstances life throws at me!
Georgina Cama Montreal, QuebecLike everyone, I listened to the news for updates on this virus. My work, deemed essential would remain. Life was pretty normal, until the closures started. I woke up one Saturday morning, rolled over and went into atrial fibrillation. I had experienced this once before, but not since heart surgery to replace a valve. I ended up in hospital for two days. The only thing I noticed was that both sides of my neck were swollen. I have had lymphedema in my left arm, armpit and left side of my neck for about six years. I had managed it pretty well until now.
As I am unable to see my lymph drainage massage therapist, or get fitted for a neck compression garment, I have been doing the self-massage video that I received from the Lymphedema Association, and found some good yoga videos. Next step is to see my chiropractor. Deemed as urgent, I can see him for shockwave therapy. I tried this last year, and it really reduced the swelling under my arm. I am hoping for the same result again. Be safe everyone. Stay healthy, stay strong!
Rita Fischer Lethbridge, AlbertaWe are all doing well. After asking some workers to work from home, changing shifts, and modifying business hours to maintain social distancing, we are still open for business and are able to ship orders within a few business days! I hope you and your families are well also!
Anna Sokolowski, Marketing Director LympheDivas
Especially given the COVID-19 isolation protocols, it can be hard to remind yourself to move. Our daily step counts are dwindling just due to the decrease in daily activities we normally have outside the home. Aim to get up once every hour and walk around—whether it be outside or inside your house.
Due to the global pandemic we have all been made aware that one of the most important things we can do as a precaution is to wash our hands. Ensure you are keeping your water at a lower temperature to avoid damage or possible burns to the skin.
Source: CureToday.com
Living with a chronic illness can feel isolating, and not being able to leave the house can intensify these feelings. It is important during these times to ensure you stay connected with the people in your life or even form new connections by reaching out to people who might be feeling the same way. See if you can get connected with another patient by researching online support groups in your area. Your provincial lymphedema association can be a valuable resource.
While lymphedema therapy appointments have been put on hold (or may be occurring less frequently) make sure that you stay in touch with your therapist. They may have at home massage tips that will prove to be helpful while we are all staying home.
Deep breathing is helpful for all types of lymphedema, even head and neck swelling. It changes the pressure in your abdomen and chest which encourages lymph to flow back into the blood system. Try five deep breaths while lying down with your hand on your abdomen. Breathe in through your nose and slowly out through your mouth.
Source: Cancer Research UK LP
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Lower extremity lymphedema is frequently encountered in the vascular clinic. Established dogma purports that cancer is the most common cause of lower extremity lymphedema in Western countries, whereas chronic venous insufficiency (CVI) is often overlooked as a potential cause. Moreover, lymphedema is typically ascribed to a single cause, yet multiple causes can coexist. A 3-year retrospective analysis was conducted of demographic and clinical characteristics of 440 eligible patients with lower extremity lymphedema. Results: The four most common causes of lower extremity lymphedema were CVI (phlebolymphedema; 41.8%), cancer-related lymphedema (33.9%), primary lymphedema (12.5%), and lipedema with secondary lymphedema (11.8%). The collective cohort was more likely to be female (71.1%; P < .0001), to be white (78.9%; P < .0001), to demonstrate bilateral distribution (74.5%; P < .0001), and to have involvement of the left leg (bilateral, 69.1% [P < .0001]; unilateral, 58.9% [P = .0588]). Morbid obesity was pervasive and significantly correlated with a higher ISL lymphedema stage. Approximately one in three of the population sustained one or more episodes of cellulitis, but patients with stage III lymphedema had roughly twice the rate of soft tissue infection as patients with stage II. Multifactorial lymphedema was present in 25%.
Conclusions: In a large cohort of patients treated in a cancer-affiliated physical therapy department, CVI (phlebolymphedema), not cancer,
was the predominant cause of lower extremity lymphedema. One in four patients had more than one cause of lymphedema. Notable clinical characteristics included a proclivity for female patients, bilateral distribution, left limb, cellulitis, and nearly universal morbid obesity.
Source: J Vasc Surg Venous Lymphat Disord. 2020 Jan 25;: PubMed: 31992537
A few studies have examined the characteristics of severe breast cancer-related lymphedema (BCRL). Characteristics of patients and factors related to severe BCRL were retrospectively assessed in 74 patients. The median age at time of LE was 56 years (30-82). Thirty-five patients (47.3%) had a mastectomy and 72 (97.3%) an axillary lymphadenectomy. Among patients treated with radiation therapy (n = 72), 76.3% received lymphatic nodes irradiation. Fifty-five patients (74.3%) received chemotherapy and 52 (70.3%) a hormonal suppression therapy. A high proportion of patients had severe (>400 mL, 64.9%) and premature LE, with a median time of 13 months since onset of surgery (0.1-400.2). Weight gain between surgery and LE management was more prevalent in obese patients (p = 0.0164). Body mass index (BMI) at BCRL diagnosis was the only risk factor associated with severe LE (p = 0.0132). There was no significant association between LE severity and treatments received for breast cancer. Conclusions: Our study did not show any influence of tumor characteristics and cancer-related treatments on the severity of
BCRL. Only BMI at BCRL diagnosis appears as a factor related to severe LE. These results highlight the importance of an education care unit promoting personalized nutritional lifestyle and encouraging physical activity early in the management of breast cancer.
Source: Lymphat Res Biol. 2020 Apr 13.doi: 10.1089/lrb.2019.0009
Lymphedema is one of the major treatment complications following breast cancer surgery and radiation. As the majority of women who develop breast cancer are at the age of employment, occupational functioning and employment are issues of concern. This study is novel in exploring the ways that LE affects their work experience. A total of 13 female survivors who developed BCRL participated by completing a survey and a 60-min semi-structured interview. Four main themes emerged: (1) breast cancer-related LE affects physical and emotional functioning associated with work; (2) ongoing treatment for breast cancer-related LE creates challenges for work; (3) environmental factors affect the returnto-work experience; and (4) personal factors play a key role in adjusting to return-to-work. Conclusion: Both breast cancer-related LE and its treatment have direct and indirect effects on work, with environmental and personal factors also shaping the work-return experience. This study suggests that breast cancer survivors with LE who wish to return to work face potential barriers, and that gaps remain in the availability of supports.
Source: Womens Health (Lond). 2020 Jan-Dec;16: PMID: 32293984 LP
Australasian Lymphology Association
International Lymphoedema Framework
Lymphatic Research and Education Network
Lympoedema Support Network
National Lymphedema Network
www.lymphoedema.org.au
www.lympho.org
www.lymphaticnetwork.org
www.lymphoedema.org
www.lymphnet.org
Therapists can still access sessions and courses towards certification from many of the educational schools offering online options for learning. Check the advertisements in this magazine for individual school websites and details.
People living with lymphedema can access the following videos from Pocket Medic to help in their self-management, especially while they cannot access their lymphedema clinic or therapist during self-isolation.
Introduction, skin care, exercise, compression
Lymphedema education
LVA – Lymphatic Venous Anastomosis
Reducing the risk of lymphedema
Children and young people with lymphedema
www.medic.video/can-lymph
www.medic.video/can-lymph-edu
www.medic.video/can-lymph-lva
www.medic.video/can-lymph-risk
www.medic.video/can-lymph-young
I much enjoy reading your Pathways Magazine. There are lots of valuable educational material for patients and clinicians alike. Your recent article “Remedial exercises for upper extremity lymphedema” especially caught my attention (Winter issue). We know the importance of movement and muscle contractions, which stimulate the lymphatic system; your illustrations for patients following SLN/axillary node dissections in patients at risk or existing lymphedema following breast and melanoma cancer are excellent. I share them with all my patients. Please extend my thanks to the authors.
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I received the Pathways Spring magazine.Thearticle/interview byMachteldHuberisgreat.Isaw her lecture at the ILF conference inRotterdamandwasdeeply impressed.Formeitwasthe best lecture at this conference.
The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality.
About the CLF
The Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada.
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Thank you for all of the great information you share, and stay healthy!RitaFischer Lethbridge,Alberta
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The growth in awareness and focus on lymphedema has been extremely helpful to those of us who have it. Pathways is a great magazine to keep up with progress in Canada.
Bytheway:Ilovethepictureon thecoverofSpring Pathways We should see more of these “normal” women on other magazines.Itwouldreduce thepressuretohaveabodyshape likesuperthinmodelshave.
Joan Plamondon
Fort Saskatchewan, AlbertaLetters to the Editor... __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________
The CLF distributes Pathways including customized inserts through its provincial partners.
Alberta Lymphedema Association
Atlantic Clinical Lymphedema Network
BC Lymphedema Association
Lymphedema Association of Manitoba
Lymphedema Association of Newfoundland and Labrador
Lymphedema Association of Nova Scotia
Lymphedema Association of Ontario
Lymphedema Association of Quebec
Lymphedema Association of Saskatchewan
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