Pathways Summer 2015 (Volume 4, Issue 3)

Canada’s Lymphedema Magazine

Pathways

SUMMER 2015

Empowering patients and professionals

Measurement technologies improve Self-care top tips Research priorities WH A T ’S INSIDE... Clinical perspectives

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Ask the Expert

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Editor’s Message

Taking charge and managing your lymphedema

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xciting advances in lymphedema assessment technologies are changing how we measure and monitor lymphedema.

Margie McNeely’s article showcases how devices such as perometry and bioimpedance analysis are helping to improve both the efficiency and accuracy of the measurement of lymphedema in clinical practice. These tools are relatively new to Canada and not yet widely distributed due to the need for Health Canada approval. These devices are also allowing us to better detect lymphedema in its earliest stages when it is most responsive to conservative treatment.

For health professionals wanting to learn more about measurement using these technologies, Dr. McNeely will be facilitating a hands-on workshop at the national conference in Calgary, this fall.

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their limb, using this skill as a life-long tool to take charge.

We hope that these two articles on self-management, along with the CLF’s new patient educational publications will encourage patients to take charge of their lymphedema learning as much as they can.

Two therapists from Winnipeg’s Regional Health Authority (Jen Dalke and Katherine Styrchak) share how their program’s principles of working together with the lymphedema patient and their family provides the best possible outcomes.

CANAD IAN LYMPH EDEMA FRAME WORK

I invite you to schedule a break in your day— to sip a cup of coffee or tea while you browse the new CLF website www.canadalymph.ca.

PARTEN ARIAT CANAD IEN DU

LYMPH The Cana OEDÈM E dian profit collab Lymphedema Framewor oration k (CLF) is amon community a nonbased organ g health profe ssionals, patients izations, researcher to impro industry ve the stand s, Canada. partners ards of and lymphede ma care Founded in in 2009, the CLF working is the only nationally Cana to partner of the Intern address lymphede dian organizatio n internation ma conce ational Lymp rns. It is al a guidelines initiative to prom hoedema Fram ework ote resea and lymp an rch, best Canada hedema and aroun practice clinical developme d the world nt both . in

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chronic lymphedema soon discover that learning to manage their condition themselves is the key to successful treatment.

by www.ca

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Those diagnosed with

Summer 2015

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Part of the treatment for lymphedema includes education for patients to learn how to take charge of their chronic condition.

Those diagnosed with lymphedema soon discover that learning to manage their condition themselves is the key to successful treatment. Lori Radke, of the Tom Baker Cancer Centre in Calgary, shares her top 10 list of self-care tips. Further helpful suggestions specific to living with lymphedema in the warm summer months can be found in the Hints and Tips section of this magazine as well as our new website.

Pamela Hodgson from Montreal also emphasizes self-care by explaining the importance of compression wrapping and how patients can learn to self-bandage

We thank them for a peek into the lymphedema clinic where they practise.

Edith Mulhall, a lymphedema therapist with a private practise in Manitoba, shares her story about a young patient and gives us a glimpse into how lymphedema therapists are learning from their patients as well.

One of the roles of the Canadian Lymphedema Framework (CLF) is to facilitate research connections. Their Research Working Group used the Delphi technique of ranking research topics to gain consensus on lymphedema research priorities for Canada. The two top rankings were effectiveness of treatment modalities and

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incidence and prevalence. The CLF plans a more formal publication later this summer of these results, which can be used to support both research grant applications and local advocacy efforts.

Lastly, I invite you to schedule a break in your day—to sip a cup of coffee or tea while you browse the new CLF website (www.canadalymph.ca).

This site is full of practical information about lymphedema including links to some archived Pathways articles and other valuable resources. Remember to check back regularly for news and highlights. ENJOY. LP

Anna Kennedy

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Contents

Technologies improve accuracy and reliability of lymphedema measurement Summer 2015

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Volume 4 Issue 3

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 Pamela Hodgson, PT David Keast MD FCFP Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Intern Nicole Boulet Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board.

Contents may not be reproduced without written permission of the Canadian Lymphedema Framework.

Subscription Rates (1 year) Canada–$25.

International–$50.

Single copies and back issues–$7.

Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca Stock photos in this issue: CanStockPhoto Other photos are courtesy of K.Avanthay, M.McNeely, J.Dalke

Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada

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New technologies are improving the accuracy and reliability of measuring limbs affected with lymphedema.

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Lymphedema Research Establishing lymphedema related research priorities in Canada Researchers identify and reach a consensus on lymphedema research topics that are most needed and will have the greatest impact for the lymphedema community.

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Top Ten Self-Care Tips for Lymphedema Managing your lymphedema one step at a time

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Tips on maintaining a healthy limb and keeping lymphedema under control.

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Ask the Expert A tool for taking-charge Self-bandaging is an acquired life-long skill useful in managing lymphedema.

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Working Together for the Best Outcomes A report from the lymphedema clinic at Winnipeg’s Breast Health Centre Encouraging the lymphedema patient and their family as part of the health care team.

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A Therapist’s Perspective How one small patient inspires a lymphedema therapist and validates her chosen career.

22 Summer 2015

Clinical Perspectives

Technologies improve accuracy and reliability

of lymphedema measurement

By Margie McNeely imb volume is a commonly used metric to improve both the efficiency and accuracy for diagnosis, to evaluate lymphedema of the measurement of lymphedema in severity and inform decision-making in the clinical practice. Importantly, the devices are clinical setting. The measurement of limb also allowing us to better detect lymphedema size and volume has traditionally involved in its earliest stages when it is most responsive to conservative treatment. either measures of the circumference of Two of the devices now being used in the limb using a tape measure or the lymphedema research and water volumetry. In the case of measurements of circumferclinical settings are perometry ences, a number of points and bioimpedance analysis The main reason are measured along (BIA). Ironically, these for the slow uptake the limb and these devices are actually not of use of these measures can be new; they are just new devices in Canada used to calculate the to Canada. The devices limb volume. Water are used widely in other has been due to the volumetry provides a countries and have need for Health been available on the direct measure of limb Canada approval. market for over 15 years. volume and has long So, why are we, in Canada, been considered the gold so behind the times? The main standard method to quantify reason for the slow uptake of use of limb volume. The limb is immersed these devices in Canada has been due to in a water volumeter or tank with a drainage the need for Health Canada approval. The spout. The fluid that is displaced by the limb flows out the drainage spout and is perometer is manufactured in Germany and either measured or weighed. In addition to the lymphedema specific bioimpedance being time consuming, issues related to the devices, in Australia. For the manufacturers accuracy and reliability of the measurements of these devices, obtaining Health Canada plague these two methods, especially when approval to allow distribution in Canada is more than one therapist is involved in the an expensive and time-consuming process. measurement and care of the patient.

Moreover, there are few financial incentives.

Fortunately, advances in lymphedema Canada is a small market in terms of the assessment technologies are now helping numbers of Canadians with lymphedema, Margaret McNeely, PT, MSc.PT, PhD is an Assistant Professor in the Department of Physical Therapy at the University of Alberta and Cross Cancer Institute in Edmonton. Dr. McNeely’s research interests are in the area of cancer rehabilitation and exercise. She sits on the National Lymphedema Conference Scientific Committee.

Summer 2015

Photo: http://gefaesszentrum-hof.de/ueber-uns/praxisrundgang.html

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and the number of organized lymphedema clinics with the funding to purchase these costly devices.

Perometer The Perometer (Pero-systems, Wipputal, Germany) is an optoelectric limb volumeter that uses infrared technology to provide a three-dimensional model of the measured limb. The horizontally-oriented moveable four sided frame (Figure 1) emits two parallel rays of infra-red light beams at right-angles to each other. The limb is held Figure 1: in a position parallel to Perometer Frame the rail (Figure 2). The frame is moved along the length of the arm or leg of the patient by the clinician (see Figure 3 on page 6).

The introduction of the arm or leg interrupts the path of the beams

Figure 2: Perometer Rail Ly m p h e d e m a p a t h w a y s . c a 5

Figure 3: Lymphedema study participant, Mary Ann Hess, has her arm measured by Dr. Margie McNeely using the Perometer. and the detectors within the frame allow the generation of an image every 4 mm.

A computer program (Pero-plus software) uses the images created to calculate the full limb volume. Limb volume, percentage difference between selected measurements, contour, and cross-sectional area can all be displayed. The software provides the percentage and milliliter difference between limbs and allows for limb comparison over time. The Perometer has been shown

to be a valid, reliable, and sensitive method to quantify limb volume, making it an ideal tool for both research and clinical applications.1,2 Importantly, if standardized procedures are followed for limb positioning (Figure 4), the accuracy of measurement is better than water volumetry and circumference measurements even when different clinicians perform the measurement. The perometer is also more sensitive to change

Procedures to improve accuracy • Table height • Chair height • Position of perometer on table • Position of patient’s limb • Standardized length of measurement

Figure 4: Procedures to improve accuracy: hand position – flat, thumb in; arm positioned at 90 degrees abduction; limb placed parallel to the Perometer rail.

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and is able to detect small increases in limb volume, thus aiding in early detection.

A significant advantage of the perometer is its time saving efficiency. Measurement of the limb only takes seconds to perform.

Entering the patient’s information into the software database and taking measures of each limb takes a total of 2-3 minutes, whereas measurements of circumference including calculating arm volumes takes 15-20 minutes. One disadvantage with the device is that even with careful positioning it is often difficult to measure the upper most aspect of the limb. In these cases, a circumferential measurement at the top of the limb may need to taken.

The perometer is considered a Health Canada Class I device and can be purchased for use clinically in Canada. The cost of the device and software ranges from $20,000 to $27,000 CDN, depending on the type of perometer and required accessories.

Bioimpedance Analysis Bioimpedance analysis (BIA) is a method used to assess extracellular fluid status in the limb. The extracellular fluid is the fluid that rests in the tissues outside of the cells.

BIA measures the impedance (resistance) of flow from a low alternating electrical current that is applied to the body through a skin electrode. If there is more fluid in the tissues as with early stage lymphedema, the resistance is lower.

BIA records impedance values for each limb and provides an index (L-Dex value) that indicates the difference between the affected and unaffected limb. L-Dex values are displayed against a normal “healthy” range (Figure 5). As the amount of fluid in the tissue increases, the L-Dex value gets correspondingly higher. L-Dex values greater than 10 or an increase of 10 L-Dex units may be indicative of lymphedema.3 BIA is a simple, harmless procedure that takes only minutes to perform. When measuring the arm, an electrode is placed at each wrist and on the front of the right ankle (Figure 6). Both limbs are measured.

The electrical current applied is so small that the patient cannot feel it. Bioimpedance cannot be used in individuals who have a Summer 2015

L-Dex normal range mean

– 10.0

0.0

10.0

Date 14/07/2008 L-Dex: 3.20 In normal range 20.0

Figure 5: L-Dex normal range values -10 to 10. pacemaker, metal implants in the region or who are pregnant.

BIA has been shown to detect very early increases in extracellular fluid volume.

In this way, BIA is a more sensitive measure than arm volume in detecting increases in extracellular fluid in those developing lymphedema or with early mild lymphedema

(Figure 7 on page 8).

The L-Dex has been shown to be less reliable in those with long-standing lymphedema.26 In my experience, however, the L-Dex value is still useful for those with chronic lymphedema. The L-Dex provides information on extracellular fluid changes that complement the objective evaluation of lymphedema and the data on arm lymphedema volume. In some patients the arm lymphedema volume is high whereas the L-Dex value is low. Although the findings seem in contrast with each other, the low L-Dex value is often consistent with clinical findings of non-pitting lymphedema and the presence of tissue fibrosis and

Figure 6: Patient being assessed using an L-Dex device.

Perometer

At the National Lymphedema Conference in Calgary we will be offering a practical workshop on the use of perometry and bioimpedance spectroscopy for measuring lymphedema. abnormal fat deposition. Thus, I find the L-Dex value another useful metric of my clinical assessment, which I use to inform the stage and severity, and for interpreting treatment response. At this point in time, the L-Dex is only approved for use in research in Canada. The device costs in the range of $30,000 CDN. At the National Lymphedema Conference in Calgary (October 23-24, 2015) we will be offering a practical workshop for health professionals on these measurement techniques continued on page 8

Precision Limb Measuring System

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The Perometer provides immediate volumetric limb measurements, it analyzes volumetric differences between limbs and monitors progress over time.

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Perometer Model 350 NT for measuring in a seated position Perometer Model 400 NT for measurement in a standing position

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Ly m p h e d e m a p a t h w a y s . c a 7 1/27/14 8:42 AM

L-Dex History Chart

20.00

13.43

15.00

10.60

10.00

6.36

7.00

8.92

7.66

10.00

11.67

11.78

L-Dex

L-Dex

4.71

5.00 0.00

–4.41

Mean

1.47

0.20

Baseline

–3.04

–5.00 –10.00 –15.00

0

Time in months

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Figure 7: Monitoring changes in L-Dex value over time. of perometry and bioimpedance spectros.

We will demonstrate use of the devices, and discuss standardizing measurement procedures to ensure optimal accuracy and reliability, and interpretation of findings. Participants will spend time practicing use of the devices.

We hope to see you there. LP References 1. A rmer JM, Stewart BR. A comparison of four diagnostic criteria for lymphedema in

a post-breast cancer population. Lymphatic Research and Biology. 2005;3(4):208-17. doi:10.1089/lrb.2005.3.208.

2. Ancukiewicz M, Russell TA, Otoole J, Specht M, Singer M, Kelada A et al.

Standardized method for quantification of developing lymphedema in patients treated for breast cancer. Int J Radiat Oncol Biol Phys. 2011;79(5):1436-43. doi:10.1016/j.ijrobp.2010.01.001.

3. Stanton AW, Northfield JW, Holroyd B,

Mortimer PS, Levick JR. Validation of an optoelectronic limb volumeter (Perometer).

Lymphology. 1997;30(2):77-97.

4. W ard LC, Czerniec S, Kilbreath SL. Quantitative bioimpedance spectroscopy for the assessment of lymphoedema.

Breast Cancer Research and Treatment.

2009;117(3):541-7. doi:10.1007/s10549008-0258-010.1007/s10549-008-0090-6; 5. C ornish, B.H., Bunce, I.H., Ward, L.C., Jones, L.C., Thomas, B.J., Bioelectrical impedance for monitoring the efficacy of lymphoedema treatment programmes (1996) Breast Cancer Research and Treatment, 38 (2), pp. 169-176., DOI 10.1007/BF01806671; concordance correlation coefficient to evaluate reproducibility (1989) Biometrics, 45 (1), pp. 255-268., DOI 10.2307/2532051.

5. W ard LC, Czerniec S, Kilbreath SL. Operational equivalence of bioimpedance indices and perometry for the assessment of unilateral arm lymphedema. Lymphatic Research and Biology. 2009;7(2):81-5. doi:10.1089/lrb.2008.1027.

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Research Priorities Heading

Lymphedema Research Priorities in Canada: A Delphi Study

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ymphedema is a chronic condition, most commonly manifesting as swelling of one or more limbs. Other areas affected by swelling include the head and neck, trunk, breast, and genitalia. Lymphedema is categorized as primary or secondary, the latter of which in North America is thought to be primarily associated with cancer and/or its treatments. The accumulation of lymphatic fluid in secondary lymphedema after cancer results from damage to the lymphatic vessels and/ or nodes (e.g., as a result of surgery or radiotherapy). Swelling often results in pain and discomfort as well as physical and psychological morbidity, including poor

At the request of the Canadian Lymphedema Framework Advisory Board, the Research Working Group agreed to initiate a process to identify lymphedema research priorities. body image and issues with mobility.

People with lymphedema may also be susceptible to acute cellulitis, which requires the frequent use of antibiotics, may require hospitalization, and can be life threatening. In comparison to other chronic illnesses and conditions, both primary and secondary lymphedema are under-researched.

By Roanne Thomas

One of the roles of the Canadian Lymphedema Framework (CLF) is to facilitate research connections. The CLF is a collaboration of medical academics, lymphedema therapists, patient advocates, and interested others, and is part of an international initiative to promote research, best practice guidelines, and lymphedema clinical development worldwide.

The Canadian Lymphedema Framework (CLF) recently collected and published its second repository about current Canadian research (Pathways Winter 2015). The current topics of research are: information needs, treatment studies, laboratory research, surgery, and the impact of lymphedema. Summaries provided by researchers were published and more information can be found online (www.canadalymph.ca). Further to this work, the CLF wished to identify lymphedema research priorities which could be promoted as a Canadian Lymphedema Research Agenda and also support grant applications for funding.

At the request of the Canadian Lymphedema Framework Advisory Board, the Research Working Group agreed to initiate a process to identify lymphedema research priorities. A sub-committee drafted an initial list, based on the national lymphedema stakeholders meeting held in 2009 (published in Current Oncology: Vol.18 no.6).

Roanne Thomas, PhD is a Canada Research Chair in Qualitative Health Research with Marginalized Populations and Professor in the Faculty of Health Sciences at the University of Ottawa. Her program of research includes studies of psychosocial aspects of secondary lymphedema after cancer. She is also Co-Chair of the CLF Research Working Group.

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The Delphi technique, utilized in this study, is used to generate consensus among people who are experts in a certain topic. It is a cost effective approach to determining or ranking priorities with multiples stages of prioritization, as consensus can be reached without actually meeting in one room. In this case, the survey was used to generate consensus on priorities for research in lymphedema in Canada.

The sub-committee members were: • Cathy McPherson, Manager/Administrator of the Lymphovenous Canada website • Bev Lanning, RN, Lymphedema Registered Nurse • Pamela Hodgson, MSc, Research Associate, McGill University Health Centre • Anna Towers, MD, Director, Lymphedema Support Centre of the Quebec Breast Cancer Foundation, McGill University Health Centre • Roanne Thomas, PhD, Professor/Canada Research Chair, University of Ottawa The sub-committee chose potential respondents who would represent a variety of perspectives, including researchers, patients, advocates, Summer 2015

and health professionals. Respondents were also chosen for national representation and to achieve a reasonable response rate, allowing for attrition. The list was refined and edited via teleconference by the sub-committee. A survey was then drafted, circulated for feedback, revised, and sent via email to the identified, potential respondents.

Round one of the Delphi study survey Opened on November 19th 2014 and closed on December 3rd 2014. Thirty-three people responded out of the 42 people to whom the survey was sent (78.6% response rate). Respondents were asked to rank lymphedema research topics in order of their priority. Below are the rankings of the topics, ordered by a weighted score): 1 E ffectiveness of treatment modalities (e.g. including standardization of

definitions, measurement & assessment tools, etc.)

2 Incidence and prevalence (e.g. cancer-related, non-cancer related, primary, trauma) 3 Risk reduction (e.g. prevention post cancer, non-cancer, trauma, obesity, chronic edema) 4 Scientific (laboratory) research (e.g. lymphatic laboratory research, drug therapy, lymph node transfers, etc.)

5 Quality of life (e.g. social impact on work, home and leisure activities, etc.)

6 Economic impact (e.g. cost of treatment, personal loss, cost-benefit analysis etc.)

7 Self-care programs (e.g. patientcentered care) 8 Obesity and lymphedema/chronic edema 9 Children and lymphedema 10 Cellulitis (e.g. wound care, medication, etc.)

Round two of the Delphi study survey Respondents were asked to prioritize the top six topics from the results of the first survey. The subsequent survey was sent out on December 11th 2014 and closed January 9th 2015.

Twenty-six people responded out of the 33 people to whom the survey was sent (78.8% response rate). Comments from the first round of the Delphi survey were taken into consideration.

Here are the final results: 1. E ffectiveness of treatment modalities 2. I ncidence and prevalence 3. R isk reduction 4. Q uality of life 5. S cientific (laboratory) research 6. E conomic impact

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The table below provides more information about the ranking of research priorities. The table shows the rankings of topics by their weighted scores, but also by the number of respondents who ranked the topic as the top priority. While effectiveness of treatment ranks highest using weighted scores, it is interesting to note that incidence and prevalence was ranked as the highest priority by the most respondents (n=9).

The chart on the right also provides another way to understand the rankings.

While the weighted scores ensure that priorities can be ranked in order, the chart shows that the actual scores are quite similar because all of the sections are comparable in size. This suggests that the priorities, although ranked, were all perceived as important by respondents.

The research priorities identified in this Delphi study are in alignment with the results of the Canadian Lymphedema Framework’s 2009 meeting where stakeholders described a lack of research into the prevalence of lymphedema, effective treatment modalities, impact on quality of life, and cost analysis.

Results of the stakeholder meeting are discussed in an article in Current Oncology (www.current-oncology.com). Lack of research in these areas means that

Quality of life research is emerging as an important topic of research as lymphedema awareness increases. Researchers in this area focus on coping and emotional well-being.

While recent research has increased knowledge about treatment modalities, its ranking at the top of the list reflects the potential impact of additional research on patients. Without data on prevalence, it is challenging for researchers and health professionals to establish the importance of their work. Like treatment, risk reduction research has direct impact on people at risk of developing or worsening lymphedema.

Quality of life research is emerging as an important topic of research as lymphedema awareness increases. Researchers in this area focus on coping and emotional well-being. Basic, scientific or laboratory research will provide new knowledge about the lymphatic system that may help prevent lymphedema, lead to innovative ideas for treatment and be a possible step towards a cure.

Rank by Weighted Score

# of Respondents Ranking as Top Priority

Effectiveness of treatment modalities Incidence and prevalence Risk reduction Quality of life Scientific (laboratory) research Economic impact

1 2 3 4 5 6

4 9 5 2 5 1

Finally, economic analyses of the impact of lymphedema are also emerging, but more work in the area is required to establish costs for individuals, the health care system and to society at large. All six of these areas are connected and research in these domains is progressing.

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lymphedema advocacy with decision-makers and funders is often difficult and ineffective.

Granting agencies like to see that any research work being done responds to national research priorities in a given field.

Once the above results are published, those interested in conducting lymphedema

Priority Ranked by Weighted Average

n Effectiveness of Treatment

Modalities n Incidence and Prevelance n Risk Reduction n Quality of life n Scientific (laboratory) Research n Economic Issues

_________________________________ The average ranking is calculated as follows, where: w = weight of ranked position x = response count for answer choice 1

X1W1 + X2W2 + X3W3 ...X8W8 _________________________________ Total researchers may refer to this Research Agenda in support of their grant applications.

The CLF plans to publish a Research Report highlighting these lymphedema priorities, along with the current research currently being conducted in Canada. LP

LIMPRINT The CLF is participating in an international research study, called LIMPRINT (Lymphedema Impact and Prevalence International) which is a prevalence study to assess the number of patients with lymphedema/chronic edema and its impact on individuals and health services. The results of the study in Canada will be used to provide evidence for practise and as a support mechanism for reimbursement.

Summer 2015

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We invite you to visit our online compression club to network, ask questions, and learn from one another. Share tips & tricks, connect with colleagues, or ask the experts all your compression-related questions.

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Clinical Perspectives

Top 10 Self-Care Tips for Lymphedema

By Lori Radke

As a physical therapist and certified lymphedema therapist, the hardest words I have to say to someone is, “Yes, you have lymphedema. Yes, it is a chronic condition and will not go away.” But I always follow that with, “but, we can manage this together.”

While it may take a while to fully accept that living with lymphedema is your ‘new normal’, there are things you can do each day that will help to keep your limb healthy and your lymphedema under control.

10

RISK REDUCTION is the Best Medicine If you can avoid some of the main triggers for lymphedema, hopefully you can avoid progression of the condition.

This means maintaining a healthy weight, avoiding infection and injury to the limb, in order to reduce your chances of developing and worsening your lymphedema. As well, timely and regular treatment of your lymphedema is important.

At our clinic, we include education in almost every session

9

SOFT and Smooth A key goal of skin care for lymphedema is to prevent the more injurious outcome of a cellulitis (infection) in the affected limb or body part. Cellulitis can make you very ill, cause the lymphedema to get worse, and make you more susceptible to further infections. Application of a good moisturizer with a low pH to the skin on the affected body part at least twice a day reduces the risk of skin breakdown and subsequent infection. (A list of recommended skin care products can

8

COMPRESSION May be Your Best Friend Compression bandaging therapy will provide you with the most volume reduction and the best maintenance of this reduction.

McNeely and colleagues1, in a 2011 systematic review, reported reductions of 17-60% from compression therapy treatment. Multilayer compression bandaging has been used successfully for many years. Now, there is another option for you, the lighter 2-layer Coban bandaging system. Having more than one option for compression bandaging allows us to customize your lymphedema treatments to suit your needs!

Mastering the skill of applying multi-layer bandages yourself can help you to successfully self-manage your lymphedema. A retrospective study on a self-bandaging programme in Quebec found

with our patients, to give them the necessary tools to keep their lymphedema under control. It is important that your lymphedema therapist directs you to reliable websites, books, and resources.

The National Lymphedema Network (NLN) publishes an excellent resource about risk reduction (www.lymphnet.org) and there is good information plus hints and tips on the new Canadian Lymphedema Framework website (www.canadalymph.ca).

be found in the Spring 2014 issue of Pathways). If the skin has been radiated, then extra care is needed to protect the fragile skin in this area. If you get a cut or abrasion in the limb or region of the swelling, you need to clean the area immediately and apply an antibiotic ointment. At the first signs of infection, (rash on the limb, feeling unwell, fever) you should seek medical attention immediately as the infection can spread very quickly and you may require intravenous antibiotics.

the majority of participants were able to reduce their limbs to a level equal to the outcome achieved by trained therapists. As well, when provided with adequate training and follow-up, these patients expressed an increased feeling of control over their lymphedema and appreciation for the effectiveness of bandaging2.

Night-time compression therapy may be useful in the maintenance phase when we are trying to maintain the volume reductions achieved from intensive CDT treatment. Vignes and colleagues3 found that women with breast cancer related lymphedema who applied compression bandaging at least four nights a week had better control of their lymphedema than women who were wearing only day-time compression.

Lori Radke, BSc, PT is a Certified Lymphedema Therapist (Norton School of Lymphatic Therapy), and has worked across the province since 1988. Lori has been the Rehabilitation Coordinator at the Tom Baker Cancer Center since 2008 where she initiated oncology rehabilitation services focused on lymphedema management.

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Summer 2015

7

ALL COMPRESSION GARMENTS are Not Created Equal Each person’s limb is unique and responds differently to compression; your age, the condition of your skin and tissues, and your ability to apply and remove a garment are important considerations in garment choice. Knowing the many options available and the differences between the various garment brands will help you to find the best garment for your limb. Ready-made garments are generally a good starting point if your limb length and shape are fairly standard. If you have moderate or severe lymphedema, or if the shape of your limb is more bulbous in one or more areas, or your limb is extra short or long, you may need to be fitted for a custom made garment.

If you do not wear a daytime garment, the benefits of the

intensive treatment will be lost, so fit and comfort are important. Your lymphedema therapist and fitter must be willing to explore options with you. Sometimes we, as therapists, need to compromise (e.g., a lower compression class or less costly garment option), so that your needs are realistically met. The therapist should also periodically check the garment fit and effectiveness, and modify the system as needed, to ensure the best outcome. If a circular knit garment is not firm enough to control the swelling, you may need to consider a less stretchy flat-knit garment. You may also want to consider a different garment type or compression level for specific activities such as exercise or gardening. Remember to replace your garments at least every 6 months to ensure you are getting the prescribed compression.

6

LYMPHEDEMA AND EXERCISE. They Can and Should Go Together et medical clearance from your doctor before starting any In their systematic review in 2014, Paramanandam and •G 4 exercise program.

Roberts found that supervised weight training did not increase the risk or severity of breast cancer related lymphedema, and in fact • Always start at a low intensity with low weights and low repetitions. improved strength and quality of life. All participants in the studies Progression should be slower than normal and continually evaluate included in this review wore compression garments for exercise. the status of your lymphedema limb after an activity.

Exercise is encouraged and the NLN has an excellent position •W ear your compression garment during exercise. statement on exercise (www.lymphnet.org). The cautions that go • I f you have lower extremity lymphedema: there may be extra with this advice include: precautions to consider.

5

IT TAKES A VILLAGE to Manage Lymphedema Dealing with a chronic condition such as lymphedema involves you at the centre and a team around you. If you can surround yourself with the following team members, then you will be more likely to be successful. Your family physician will be monitoring your cancer and lymphedema, and ensuring other medical conditions are well managed. A certified lymphedema therapist can be very valuable as knowledge of lymphedema in the general medical world is limited.

These professionals have undergone specialized training that currently includes a minimum of 135 hours. A knowledgeable and caring garment fitter is an essential team member as fitting of a compression

4

CONSIDER SELF CARE as Me Time When I was preparing for this article, I asked one of my patients about the burden of self-care and lymphedema. She felt that she managed better with all the care she needed to do, including self-bandaging, when she stopped resenting the time

3

CHECK IN Regulary As a lymphedema therapist, I feel strongly that I need to see my patients at least annually to ensure that they are on track with their lymphedema. These visits can identify subtle increases in limb volume that you may not even notice. Perhaps you need further

Summer 2015

garment is an art as well as a skill. There are multiple factors to consider, so, your fitter needs to work with you and your lymphedema therapist to ensure the garment is appropriate and fits well. Of course, supportive family and/or friends also make the ongoing selfmanagement practices of bandaging and massage easier for you.

There is a huge emotional component for many patients when they are diagnosed with lymphedema. The therapies may seem overwhelming and you may have issues related to changes in your body image. Ask your doctor or therapist about referral to psychosocial services, or options for support groups.

it took and considered it to be “me” time. She would use the time to also meditate or listen to her favourite music. Changing your perception in this way may help you to increase compliance with these time-consuming activities.

intensive treatment or just an adjustment to your maintenance plan.

The same patient (above) told me that by checking in regularly she was inspired to keep up with her self-care and felt she benefitted from refreshers on self-bandaging techniques or self-massage.

L y m p h e d e m a p a t h w a y s . c a 15

2

THERE IS NO SINGLE RECIPE For Treatment Lymphedema therapists are trained to use the all the components of CDT to treat their patients. However, it is crucial to recognize that the response to treatment will differ from one individual to another. Where you are in the cancer journey and the stage of your lymphedema can affect how able and ready

1

LEARN FROM OTHERS Many of the best self-care tips that I use in my clinical practice, I have learned from my patients. Living with lymphedema, patients often come up with extremely innovative and brilliant ways to manage their condition. Here are just a few of my favourites: • Use a crinkly firm shopping bag, to slip over your wrap to get your arm in the sleeve of your shirt or jacket. It can easily be carried in your jacket pocket or purse.

• Carry a small antibiotic spray bottle with you to treat small abrasions immediately.

• Wet your compression sleeve on a hot summer day to cool your arm and your body.

you are to undergo lymphedema treatment and to learn selfmanagement. It may take time for you and your lymphedema therapist to find which treatments work best for you (and your lifestyle) and to devise a customized lymphedema management plan for you.

• Place your night compression garment in the freezer to cool it prior to putting it on.

• Spandex, shape wear and athletic type garments (cycling shorts, running bras etc.) from department or sporting stores can be an inexpensive alternative for proximal trunk or pelvic lymphedema.

• Use a small foam paint roller to be able to reach more areas on your trunk and shoulder during self-massage. LP

A full set of references for these top ten tips are available at the lymphedemapathways website .

What are Your Lymphedema Self-Care Tips?

Lori Radke will be facilitating a workshop at the National Lymphedema Conference in Calgary, October 23-24 and looks forward to hearing about your unique self-care tips. You can also send them to pathways@canadalymph.ca.

16 L y m p h e d e m a p a t h w a y s . c a

Summer 2015

Ask the Expert

Self-bandaging—­

a tool for taking charge

By Pamela Hodgson

Q A

What is self-bandaging?

Those diagnosed with chronic lymphedema soon discover that learning to manage their condition themselves is the key to successful treatment.

Careful attention to skin care, consistent wearing of well-fitted compression garments, exercise, and lymphatic drainage all e dag play a role.

Ban limb! my At the start of decongestive lymphatic therapy, compression bandages are applied by lymphedema therapists to reduce swelling. To be effective, bandages must be re-applied every 24 to 48 hours. Because of possible weekends and days when no therapy is provided, therapists will often teach their clients how to apply the bandages safely and successfully themselves.

Simply put, self-bandaging is an acquired ability to apply effective bandages oneself, or with the help of a family member or friend.

life-long skill that can be used during the maintenance phase at night as a means to control occasional increases in swelling. If a flare-up occurs and patients are unable to see their therapist immediately, and they have been taught self-bandaging, they have an advantage: they can bandage themselves. Before new compression garments are ordered, self-bandaging can be used to reduce swelling. Once the effect of bandaging shows stability (as monitored by a week or so of consistent measurements taken by the patient), garments can be ordered. Of course, bandaging must be continued until the new garment’s arrival.

the required dexterity, flexibility or strength, a dedicated family member or friend can be taught the bandaging techniques. It is always important to learn from a qualified lymphedema therapist, to return for checkups and review of techniques, and to seek advice from a therapist if any questions or unwanted consequences arise.

Q A

Why is self-bandaging important?

Chronic lymphedema is a life-long condition that requires regular, careful attention. Recurring treatment costs may prevent some patients from accessing the therapy that they need. Studies have shown that without appropriate treatment, those with lymphedema are twice as vulnerable Who is a good candidate? as others to complications that require hospital services. Compression is the key Not everyone is capable of selfelement of successful therapy. Sometimes bandaging. Those with lower limb a compression garment is not sufficient lymphedema, for instance, must have and compression bandaging at night is enough flexibility and dexterity to reach also required. Self-bandaging is a tool their feet. Those with upper limb that patients themselves can use lymphedema often believe whenever they need to, that it is impossible at a reasonably low cost.

Self-bandaging to apply bandages How is self-bandaging used?

In the case of any themselves using is a tool that chronic disease, patient Self-bandaging enables people with their non-dominant patients themselves self-management is crucial lymphedema to take charge and control hand. Happily, this can use whenever to long-term positive their condition themselves. It is used initially is not the case at all: they need to, at outcomes.

Educating in the intensive treatment phase, when the non-dominant a reasonably patients about risk reduction patients are not able to see their therapists hand can definitely be low cost. practices and encouraging as frequently as necessary for re-application used to apply bandages them to exercise is part of of compression bandages. Under the effectively to the dominant standard care. Teaching self-bandaging guidance of a therapist, patients and arm. What is needed is a good and self-measuring should be included in interested family members or friends are teacher, determination on the part of this education. A final major benefit is that taught how to apply bandages safely. the client, and then practice. For those who patients who practise self-bandaging declare Once mastered, self-bandaging is a want to learn to bandage themselves but lack that it makes them feel more independent and bolsters their confidence. They feel Pamela Hodgson, RMT, MSc. works as a research associate and reassured that they can look after themselves lymphedema therapist at the Lymphedema Support Centre of the Quebec Breast and take charge of their lymphedema. For Cancer Foundation and the McGill Lymphedema Research Program (Montreal, patients, this additional self-confidence is Quebec). She is an active member of the Canadian Lymphedema Framework. considered an important gain.

A

Q

Q A

LP

Summer 2015

L y m p h e d e m a p a t h w a y s . c a 17

Clinical Perspectives

Report from Winnipeg Breast Health Centre:

Working together for the best outcome

A person and their family as part of the health care team

C

omprehensive is a word used to describe the services offered at the Breast Health Centre (BHC) in Winnipeg. That is because a multidisciplinary team of experts who specialize in breast health work together to assess and support patients through the cancer trajectory. This approach also includes the patient and their family as an integral member of the health care team.

This is a perspective that the lymphedema therapists at the Breast Health Centre embrace, according to Tania Sloan, the Centre’s Executive Director. “A person’s holistic health and wellness are our priorities. Each of our health experts offers a way to help build or improve a person’s wellbeing”, says Sloan.

“But they also have an awareness of what supports can help a person feel as healthy

pe No n m Ap in ril atio 15 ns ,2 01 5

Jen Dalke, RMT, CLT-LANA and Katherine Styrchak, RMT, CLT-LANA are Certified Lymphedema Therapists at the Winnipeg Regional Health Authority’s Breast Health Centre Lymphedema Clinic, where they treat people with breast-cancer related lymphedema.

Katherine also treats patients at her private practice.

as they can. The lymphedema therapists know how they might invite another’s expertise within the Centre to help facilitate or support that wellness in a different way.”

The reverse is also true: every department at the Breast Health Centre knows the signs and symptoms of lymphedema, resulting in referrals from everyone in the Centre, including the radiologists.

In addition to providing direct care, the lymphedema therapists at the BHC are also committed to delivering one of the most powerful tools available: information. Often, a greater understanding of their condition can reduce patient stress and empower them to improve their health. This could mean

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doing self-massage at home, improving their diet or incorporating more physical activity into their routine. The upcoming printing of a lymphedema self-care manual is exciting because it, along with presentations, brochures, booklets and DVDs offered, puts information into the hands of the patient and engages them to participate in their health and wellness. The lymphedema therapists also deliver presentations to individuals, groups and health care providers.

Health experts at the BHC also do

outreach, operating within a complex health system in the Winnipeg Health Region to encourage intra-organizational collaboration.

Navigating resources can be overwhelming for a patient, so the BHC facilitates connecting a patient with appropriate resources, through a variety of relationships and networks within the healthcare system and external agencies. That could mean a referral to the Urgent Care Centre or for physiotherapy. It could also mean helping arrange for transportation to and from

an appointment, a translator to enable the reception of health information in the patients’ preferred language, garment fittings or funding for compression garments, and more.

“The scope of practice for the lymphedema therapists at the BHC extends beyond providing direct patient care,” says Sloan.

“They are facilitators and coordinators striving to optimize patient outcomes, often treating patients beyond their lymphedema by helping arrange for a myriad of services.” LP

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The Breast Health Centre is home to a multi-disciplinary team of experts who specialize in breast health. The lymphedema clinic is staffed by two certified lymphedema therapists (one fulltime and one part-time) who work alongside the other experts to offer education and treatment for lymphedema and cording/mobility concerns related to upper body lymphedema as a result of breast cancer. The goals of the lymphedema clinic are to provide therapy through the intensive phase of treatment, educate patients about lymphedema and provide them with the tools to best manage their lymphedema in the long-term.

Services offered are: assessment, education, axillary web syndrome or cording treatment, manual lymph drainage and compression bandaging, instruction of skin care and exercise and referrals to nutrition and psychosocial services at the Breast Health Centre. A new computer program in the clinic allows for customized exercise programs. The therapists are very fortunate to not be limited to a maximum number of visits per patient meaning they have the flexibility to create individualized treatment plans.

A physician’s referral is required and referral forms can be found on the hospital website, www.mrha.mb.ca/bhc.

Summer 2015

Letters....

Letters to the Editor... share nity to gnosed u t r o p op dia ke this zine. I was a e to ta g k nd a li a m ld e t the h legs I wou l abou ema in bot r uterin e o e f f I y m d e o t h how p ec been ild lym ing a hyster e has in z a with m g w a o ting. en foll The m r uplif abdom May 2013. times rathe a mild at r in I have t a h cance mative and t onest day for o be h le ever y t l e u f v ver y in e a t h a op . I do er y gr the pe I am v mphedema hs of ther p a r g e ly r o t f a ra ma case o that the pho at you use phede th m ou a ly y m y h e it w hed at m ld be g lymp in to fear th ree. It wou le h it w ith deg beg men w o that ling. I en/wo g for unsett o increase t m f o hs als uplif tin tograp could e ver y e pho b e s ld u o t o nice This c ribers. form. bsc u s a mild w d ne n a lf e mys ely, Sincer aponte aL Monic uebec eal, Q Montr

Dear Monica Thank you for taking the time to contact us at Pathways magazine to share both your positive feedback about our publication and your concerns regarding some of our pictorial choices.

Our mandate for Pathways is to appeal to a broad audience of people living with lymphedema and also those who support their care. This requires a delicate balance of providing enough information to enforce the message that lymphedema is progressive and without proper care can get much worse—and yet maintain a positive message of hope, that with early diagnosis and diligent self-care, lymphedema can be managed quite well. Our magazine covers always support this optimistic message. In fact, the new patient education material just released by the Canadian Lymphedema Framework, features a selection of portraits of real people living with various types and degrees of lymphedema severity, but in an encouraging and uplifting light.

Your concern may well resonate with other readers as well—including those living with mild, moderate or severe lymphedema, so we will continue to be sensitive in our selection of photographs for the magazine and also ask our authors, contributors and advertisers to be mindful of how their photographs may make our readers feel.

Regards Anna Kennedy (Editor) and the Editorial Board

We would love to hear from you...

If you would like to drop us a line, please do so at: canadalymph@live.ca

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L y m p h e d e m a p a t h w a y s . c a 21

A Therapist’s Perspectives

Why We Do What We Do

By Edith Mulhall

T

here is usually a patient who enters your practice and makes you realize that you have made the right career decision.

Someone who, quite unexplainably, flips a switch somewhere deep inside you, telling you that you are in the place you were meant to be. Then, slowly, sometimes without realizing it, you come to know that THIS is why you do what you do, and THIS is why you love what you do. In my practice, that switch was flipped by a little man 11 months old.

Austin Avanthay was born with primary lymphedema, a genetic malformation of the lymphatic system. Austin had many co-morbidities evident immediately after birth.

His entire body was swollen. The life-threatening complexities were taken care of by appropriate specialists. But the one question that remained was the persistent swelling of the right hand and forearm, and subsequent spread to his right leg and foot.

Austin’s Mom, Kim, immediately started on a very steep learning curve. She had to be persistent to get a diagnosis, find the support she needed and where to go for treatment.

Kim mentioned at one of her early appointments that it was hard to find a suitable therapist, but finally “pulled the right straw.”

Many times in our united journey, I have been aware that, I was the one who pulled the lucky straw. It was very evident that I had to take my own practice up a notch to keep up with this highly motivated young mom. She was not afraid to ask me all the tough questions. What I did not know about, I researched and shared with her. If she found the information first, she shared it with me. We were in this together.

And the whole time, Austin was growing into a very engaging little man with his shy smile, his laughing eyes, and his beautiful, strong spirit.

I had not treated a small child before, so my first line of preparation was to consult with more experienced therapists who were familiar with pediatric lymphedema, and were so willing to share information. It is one of the ways in which we all learn and become better at what we love to do.

What impact has Austin made on my practice?

I learned how getting fed up with something can be a good thing.

As often as possible, Kim brought Austin for treatment, although it was an hour and a half drive each way. This is symbolic of the commitment sometimes required to achieve proper management. It made me realize that, if someone is making that kind of an effort to attend, I had to be just as committed to providing the very best support possible. Kim learned to manage this condition, with the long term goal of teaching Austin to do his own treatment.

Edith Mulhall, RN, RMT, CLT-LANA graduated as a Vodder certified lymphedema therapist in 2000. She was one of the co-founders of the Lymphedema Association of Manitoba, and has been an active participant in the Canadian Lymphedema Framework.

22 L y m p h e d e m a p a t h w a y s . c a

One of the biggest challenges was being allowed to work on Austin’s face. The right side of his face began showing signs of edema about 6 months into treatment. Facial edema presents its own challenges, but this little guy had a mind of his own. When Kim explained that we would be working on his cheek, he looked at me as if to say, “lady, you have done some pretty weird stuff, but this beats them all.” Kim was taught to do the treatment, so she could treat him when he was asleep, or in the bath.

Children’s compression garments present another challenge. Remember trying to get a child’s foot into a shoe? Well, translate that to sliding a soft little arm and hand into a stiff compression sleeve. Lots of fun, but it worked, and after several modifications, and with the help of an expert garment fitter, a proper garment was designed and success was achieved.

What impact has Austin made on my practice? I learned how getting fed up with something can be a good thing. Kim voiced her frustration with the lack of support before Austin was diagnosed.

She and I spoke often about starting a provincial lymphedema association. Kim was and still is highly instrumental in getting this off the ground. Today, the Lymphedema Association of Manitoba (LAM) is a reality. We’ve made great progress, and are looking forward to growing and promoting lymphedema awareness.

Since embarking on this career, there have been many “Austin,” patients who have helped me realize the importance of staying current with information, helped me learn that it’s OK to laugh and also sometimes OK to cry. It’s important to be real.

To close, I would like to share a touching story. Recently, the students in his class were asked to write something about a person who was very special to them.

Austin wrote about me. This is why we do what we do. LP Summer 2015

Affiliate Profile

The Lymphedema Association of Saskatchewan Inc. (LAS) Formerly known as the Saskatchewan Lymphovenous Learning Association Inc. (SLLA) until 2011, the LAS is a non-profit organization founded in 2004 by a group of eight people who recognized the need to help those who have or are at risk of developing lymphedema and related lymphatic disorders.

Goals of the LAS include: • To promote health by providing an annual symposium on lymphedema management for health professionals and patients.

• To promote health and support by providing workshops and educational material for health professionals and patients on matters relating to diagnosing and treating lymphedema.

• To undertake activities incidental and ancillary to the attainment of the above charitable purposes.

Through its initial years, the executive board worked hard to establish by-laws, and develop and distribute their first brochure

to various organizations to help recruit new membership. It held educational events using a power point presentation purchased from the Academy of Lymphatic Studies and set up awareness/promotional booths at wellness related events. Over $13,000 was fundraised in 2011 through various activities.

On March 6th of that same year the LAS website was launched and Lymphedema Awareness Day in Saskatchewan was established. The LAS attained Registered Charitable status in 2013.

The LAS expanded lymphedema awareness and education in Saskatchewan by developing education packages for health care professionals and hosting two successful Lymphedema Symposiums: in Regina with keynote speaker Dr. Andrea Cheville (2012) and in Prince Albert with keynote speaker Dr. Towers (2014). Both events attracted 127 attendees.

From 2011 to 2013, members of LAS participated in the Ministry of Health’s Lymphedema Working and Implementation Groups that resulted in funding for patient education materials, training of 13 new public CDT therapists, purchase of new compression pumps, and 100% coverage for compression garments (4 day garments per year, 1 night garment every 2 years, swell spots and scar pads), bandaging supplies and donning accessories when requisitioned by both public and private CDT therapists.

The LAS currently provides information to its 95 members and the public through a website (www.sasklymph.ca), Facebook page, quarterly newsletter and email (contact@sasklymph.ca). The LAS is proud of its accomplishments to date and looks forward to continuing to improve lymphedema awareness, education and support in Saskatchewan. LP

You Are Not Alone

You have access to information, resources, contacts and support from people who know what you’re going through from their own personal experience. You have the following organizations on your side.

Alberta: Alberta Lymphedema Association

www.albertalymphedema.com

Atlantic Region: Atlantic Clinical Lymphedema Network

www.atlanticlymph.ca

British Columbia: BC Lymphedema Association

www.bclymph.org

Manitoba: Lymphedema Association of Manitoba

www.lymphmanitoba.ca

Newfoundland and Labrador: Lymphedema Association of Newfoundland and Labrador

www.lymphnl.com

Ontario: Lymphedema Association of Ontario

www.lymphontario.ca

Quebec: Lymphedema Association of Quebec

www.infolympho.ca

Saskatchewan: Lymphedema Association of Saskatchewan Inc.

www.sasklymph.ca

Summer 2015

L y m p h e d e m a p a t h w a y s . c a 23

Helpful Suggestions

Hints and Tips

Wash with care Summer also requires extra care of your compression garment. Sweat, body oils and lotions such as sunscreen may cause the fabric to deteriorate at a faster

rate. Follow the instructions provided by the manufacturer regarding whether lotion can be applied prior to donning the compression garment.

Careful of insect bites Insects can be plentiful during the summer months. Be prepared to treat insect bites immediately to lessen the histamine effect with Benadryl/ hydrocortisone creams or ointments with aluminum sulfate. Keep a first aid kit containing alcohol wipes, antibiotic

cream, bandages and oral antibiotics when travelling.

Cooling down If you find yourself overheated and are concerned about swelling in an affected limb, take a cool or lukewarm (not cold) shower, or lightly spray your compression garment with water – but be careful to avoid chafing of the skin at joint creases and be sure the compression garment dries in a reasonable amount of time.

LP

Source: Lighthouse Lymphedema Network

Send us your hints and tips Why not make it easier for those living with lymphedema by sharing your practical day-to-day living tips with us? We invite patients, caregivers and health professionals to send in your suggestions to pathways@canadalymph.ca.

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Wear Ease,® Inc.

1-866-251-0076

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Train in Canada

www.wearease.com

Summer 2015

Photos: CanStockPhoto

Summer precautions Summer requires extra skin care precaution for those with lymphedema. If you have leg lymphedema, be sure to wear beach shoes to avoid cuts and scrapes from shells, rocks etc. It is also important to apply moisture barrier cream and SPF sunscreen prior to entering a pool and a moisturizing lotion after contact with chlorinated or fresh/salt water. Some people prefer to wear older garments in the pool as chemicals may damage the compression garments.

Educational Initiatives

Did you know?

Lipedema steps out of the shadows On April 17 and 18, 2015, the study of lipedema took a giant leap forward with the first Lipedema Symposium in New York City. The Symposium was result of a collaborative partnership between the Friedman Center for Lymphedema Research & Treatment at Mount Sinai Beth Israel and Lipedema Simplified, LLC Prominent researchers studying the microbiology related to lipedema passionately presented their research.

Physicians such as Dr. Ethel Foldi of the Foldi Clinic and Dr. Karen Herbst, one of

Summer 2015

the few doctors in North America treating lipedema, presented their advanced views and understanding of this little-understood condition. Topics included the treatment for lipedema ranging from conservative treatments of Complex Decongestive Therapy to surgical and lifestyle approaches. The attendees were a mix of professionals, patients and patient advocates.

The first night of the symposium was the premier of the new documentary film, “The Disease They Call Fat�, a film

by Catherine Seo. The documentary manages to be both educational and moving, featuring researchers, physicians and the stories of patients who struggle with lipedema.

There is also a new lipedema network in Canada, called, appropriately enough, Lipedema Network Canada, with a website at: www.lipedemanetworkcanada.com. You can also find them on Facebook.

Source: Lymphedema Depot LP

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Education

Canadian and International Events September 25th World Congress of Lymphology conference boasts an expected 1,000 clinicians, basic and clinical scientists, 7-11, 2015 therapy professionals and patient advocates as well as leading faculty and international guest speakers.

San Francisco, USA n www.lymphology2015.com

The 2nd Canadian National Lymphedema Conference will be co-hosted by the Canadian Lymphedema October Framework and the Alberta Lymphedema Association, in collaboration with the University of Calgary.

23-24, 2015 Dr. von der Weid, Dr. John MacDonald, Dr. Christine Moffatt and Dr. Jay Granzow are confirmed guest speakers.

Calgary, Alberta

n www.canadalymph.ca

October 26– 9, 2015 Vancouver, B.C.

Aqua Lymphatic Therapy - The Tidhar Method®. A certification course offered by Dorit Tidar.

There is a minimum requirement of attendees for the course to go ahead. n Contact info@bclymph.org for information.

November 7, 2015 Vancouver, B.C.

BCLA Lymphedema Conference, Reflections on Lymphedema -details will soon be available at www.bclymph.org

May 26-28, 2016 Darwin, Australia

2016 Asia Pacific Lymphology Conference SAVE THE DATE. Organized jointly by the ILF (International Lymphoedema Framework) and the ALA (Australasian Lymphology Association). n www.2016asiapacificlymphologyconference.com

2015 Dates Canada and the United States

Therapist Training and Certification Program. Courses are offered by various educational schools for qualifying healthcare professionals. Some provincial lymphedema associations also organize or host educational courses.

We encourage you to refer to the websites of our advertisers and the individual provincial associations for specific dates and locations.

The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality.

Platinum Sponsorship

The CLF has affiliate agreements with its provincial partners for distribution of Pathways including customized inserts.

Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of Newfoundland and Labrador

Silver Sponsorship

Lymphedema Association of Ontario

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

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.

26 L y m p h e d e m a p a t h w a y s . c a

Lymphedema Association of Quebec Lymphedema Association of Saskatchewan Charitable Registration 85160 1260 RR0001

Summer 2015

J

New 2015 Spring/Summer Colors

Celebrate life in Color!

Styles:

Compression Knee High, Thigh High, Leggings, Pantyhose, Arm Sleeves & Gauntlets Models:

Soft, Dynamic & Naturally Sheer Products

www.juzousa.com 1-800-222-4999

Pink

Vintage Mauve

Gypsy Purple

Mystic Waters

Boho Berry

Moonbeam Yellow

Driftwood

Tie dye and black tie dye available!

Conference

NOW OPE N

Calgary • October 23 - 24, 2015

Co-hosted by the Canadian Lymphedema Framework and the Alberta Lymphedema Association in collaboration with the University of Calgary.

CANADIAN LYMPHEDEMA FRAMEWORK

Alberta Lymphedema Association

PARTENARIAT CANADIEN DU LYMPHOEDÈME

This collaborative event will bring together a national audience to strengthen the discussion of lymphedema care in Canada. Health professionals, researchers, patients and community leaders from Alberta and across Canada will gather in Calgary to learn from international experts in lymphedema research, diagnosis, treatment and self-care.

Key Topics • Surgical approaches • Research advances • Epidemiology • Models of care • Measurement • Advocacy

• Exercise • Self-care • Aqua lymphatic therapy • Coping/adapting to change • Panel of experts • Woundcare

Keynote Speakers

Workshop Speakers

Dr. John MacDonald

Dr. Margie McNeely

Dr. Christine Moffatt

Dr. Kristin Campbell

Dr. Pierre von der Weid

Dr. Michael Speca

Dr. Jay Granzow

Dorit Tidhar and more...

SPECIAL

SPECIAL

PHYSICIANS-ONLY WORKSHOP

NETWORKING & POSTER RECEPTION

October 23 • 5:00 - 7:00 pm

October 23 • 5:45 - 7:00 pm

Learning Stream 1

Learning Stream 2

Learning Stream 3

• lymphedema patients

• newly certified therapists

• those at risk

• general health professionals

• experienced lymphedema therapists

• family members and caregivers

• graduate and medical students

• educators

• garment fitters

• researchers

• patient advocates

Conference Deadlines

Early-bird registration ends: August 31

Last day to register: Ocober 2 1

HotelHotel booking discount discount: ends: September September21 21

education research partnerships

canadalymph.ca

National Lymphedema

REG ISTR ATIO N

Scientific Committee Dr. Pierre von der Weid Dr. David Keast Dr. Anna Towers Dr. Roanne Thomas Dr. Margie McNeely