Pathways Spring 2018 (Volume 7, Issue 2) by Canadian Lymphedema Framework

Canada’s Lymphedema Magazine

Pathways

Acc Path ess w Onli ays ne See pag e4

SPRING 2018

Empowering patients and professionals

Patientcentered approach

Kathy Bates: Her toughest role yet Resilience Skin care secrets NOUVEAU...

une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways

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Editor’s Message

Spring:

New life literally springs from the ground pringtime always reminds us of hope. At the end of a long Canadian winter, much of nature (trees, flowers and bushes) looks dead. Leaves have long fallen off, after turning brown and drying up. Plants and trees became dormant. There is nothing green anywhere. They appear completely lifeless. But we know there is still life in them and they will come back like new in the spring. If we prune them, they come back even more beautiful than the year before. I am always amazed how resilient native Canadian plants are—and how with some tender loving care, they bounce back just beautifully. They literally spring up through the ground.

with self-management. Skin care is an important aspect of lymphedema self-management that often gets overlooked. Robyn Smith reminds us how the skin acts as a barrier and shares practical tips for patients and health professionals to look after lymphedematous skin and reduce the risk of complications. Plant based skin care helped one person manage their lymphedema better. Amy Beaith’s personal story is unique in how as an entrepreneur, her lymphedema experience helped find a passion that turned into a business opportunity. Laughing Lymphercise is a creative and fun approach to O lymphedema care. Rosemary Kelly L has been leading classes for patients for many years and also trains therapists who wish to lead patients in this option. Blending sprinklings of laughter with movement is the fun way to exercise. A popular session at the conference last fall was a working roundtable discussion between a group of invited health professionals, discussing the different protocols in their hospital-based lymphedema clinics. Marie Eve Letellier and Dr. Anna Towers led this session and summarized a report on the highlights. You can get to know more about Marie Eve’s work by reading her profile, as she is this issue’s highlighted Canadian researcher. We are very exited to include a reprint of a two-page focus on PERS PERS ONA ONA LHEA LHEA LTHN LTHN EWS EWS .CA .CA

We are honoured to be able to share Kathy Bates impactful story with our Pathways readers everywhere. Resilience is needed to cope with a chronic condition, as both our bodies and lifestyles will require change. Dr. Marc Hamel repeats the key messages he shared with delegates at the 2017 fall Canadian Lymphedema Conference and encourages those of us with lymphedema to make living with lymphedema our own story of resiliency. José van Esch-Smeenge, from the Netherlands, contributes a feature article that also focuses on managing lymphedema as a chronic condition. The Dutch approach to lymphedema care places the patient in the “drivers seat” and makes them primarily responsible for managing their care program and outcomes. Evidence shows that improved quality of life is associated Spring 2018

A SPEC IAL INTE REST

SECT ION BY

Kathy Bates Talks of Her Toug hest R ole Ye t

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Keith Munyon

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ymph edem a affect women, s men, and appro ical devel ximately children opme 120 millio— catio is under people world the radar, n ing nal confe nt. Organizing wide, under-rese and rence under the -funded, yet addre Pathways s and publiedu- edem one millio arched. Anna For and ss maga a shKenn is a growi n Canadians, an estim zine helps roundingthe know will imprin the futur Exec edy ated utive ledge Cana e the chron need of ng and comp lymphedem Direc amon dian gap Left ove greatly. tor, g Lymp ic cond sur- edem untre treatm coordinate lex problem a profe physician hede ated, d preve ssion ma ent. s, allied ition a Fram ntion in volum tends to progrlymphFoun ewor Thou als, and patie healt and e and k h of nts. Lymp ded in 2009, previ gh cancer limb funct severity, ess in hedema ously the is a collab Canadian consi treatment most skin chang ion, chronleading to Fram dered was comm loss ewor oratio ic es,and profe edem on cause to be debili n betw k (CLF) ssion a, woun infections, drainage. als, comm een healt ds.As organ Self-m of lympthe edem tating physi shado it is becom dame izatio anage ntal h- tress, a also cause cal effect well as ns, patie unity-base h by the wed by lymping greatly dustr in carin ment is edem y s psych s, lymp overwhic a, funimprovepartners. Its nts, and d this rising obesi hedema cause one’s qualit h can profo ological h- edem and the provig for lymp ty the stand mission in- vancegrowing hundly dis- are a association ncial edem y of life. probl rate. Desp d Whil is a an essen affect s s acros lymphresea manageme ards of lymp to gical in diagnosticem, recen ite mana e lymp tial ing s Cana rch, best t adnt by prom elem supp ged with hedema h- and techniques imag dilige to resou ort, educa ent in provi da pract , possi ing, surnt care early diagn can be ices, and oting edemour abilit tion there coun rces for patie and accesdy to predi ble drugs of the osis clina s ct lymp , mend is currently affected and raise try. Volunteers nts acros detec provide hope t, treat no cure. limb, s the awar h- cializ ed treat that , and and advoc eness for work hard mana how we ed mass ment invol Recomto lymp ge lymp ate for sion, to care ves speequitablehedema h- ive such as age and comp comb effort in their thera acces resprovi ined s are helpi py, to s nces. face improve decongestof lymp ng to chan Their lymphatic hedem a in ge the Anna Canada. Kenn edy

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lymphedema that is part of an insert in the Maclean’s magazine April issue. It includes a story by award winning actress and lymphedema advocate Kathy Bates and her journey with cancer and subsequent lymphedema. Kathy Bates has been very active in raising awareness for lymphedema in the United States. This has caused a ripple effect in Canada and beyond. We are honoured to be able to share her impactful story with our Pathways readers everywhere. Lastly—we summarize some key points made by Dr. Alex Munnoch during the closing Panel of Experts (2017 Fall National Lymphedema D Conference) where he patiently answered the numerous questions about surgical options in North America for lymphedema patients. As with any type of treatment option, be sure to carefully weigh your options before considering the right methods of treatment for you. Learn to understand lymphedema and live successfully. LP A SPEC IAL INTE REST

Lym Affect phedema, Unde ing Millio ns, rstood by Fe w

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Contents

The lymphedema patient as director of care Spring 2018

The Dutch, patient-centered, approach

Volume 7 Issue 2

Improvement in quality of life is associated with self-management.

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 Pamela Hodgson PT David Keast MD FCFP Lori Radke PT, CLT Anna Towers MD FCFP Editor Anna Kennedy Editorial Assistant 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. United States–$50. International–$65. 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 Cover and related photos courtesy of: Keith Munyon Stock photos in this issue: CanStockPhoto Other photos are courtesy of A. Beaith, S. DiCecco, N. Melet

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

4 Ly m p h e d e m a p a t h w a y s . c a

Resilience:

Learning to cope with lymphedema Resilience is not what happens to you. It’s how you react to, respond to, and recover from what happens to you. – Jeffrey Gitomer

Report of a roundtable discussion

Canadian hospital-based lymphedema programs

Experience-based recommendations.

Living well with lymphedema Skin care secrets – based on clinical experience

10 12

Researchers Profile

Marie-Eve Letellier

Montreal-based lymphedema researcher

Laughing lymphercise Blending sprinklings of laughter with exercise movements.

Surgical related advice

From the 2017 Canadian National Lymphedema Conference

Kathy Bates

Oscar winning actress talks of her toughest role yet.

Plant-based inspiration

A lymphedema diagnosis that led to entrepreneurial success

20 23

TO ACCESS PATHWAYS ONLINE Login information: www.canadalymph.ca/pathways-online User name: Pathways Subscriber Password: resilience

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Spring 2018

Self-Management

The lymphedema patient as director of care

The Dutch patient-centered approach By José van Esch-Smeenge

ymphedema is a chronic and progressive late-stage lymphedema may cause severe condition caused by improper functioning problems for patients as a result of chronic of the lymphatic system.1 Lymphedema swelling, impaired physical function, can be primary or secondary, and is recurrent infections and disfiguring skin clinically presented as swelling caused by changes.2 Lymphedema can affect an imbalance in the transport capacity patients’ quality of life (QoL) both of the lymphatic system or it can develop physically and psychosocially.3 as a complication after medical Treatment programs to reduce risk (e.g. oncology) treatment. factors for developing lymphedema Primary lymphedemas are complex and often unknown Improvement represent a diverse by patients and healthcare group including providers. Treatment should in quality sporadic, hereditary contain topics such as of life is and syndromal forms reduction of the edema, associated and recently, an compression, exercise, selfwith selfincreased number management and reduction management. of genes are being of risk factors.4,5 The developrecognized in association ment of the Dutch Guidelines with lymphedema.1 Secondary for Lymphedema6 is a big step lymphedema was traditionally forward in improving care for patients most frequently associated with cancer with lymphedema. Standardization of the treatments, by damage to the lymphatics. diagnosis of lymphedema, implementation However recent data shows that many of effective measuring and follow-ups more people are affected by lymphedema will benefit the patient, the therapist and chronic edema due to disability and health insurance companies.6 The related conditions, chronic venous guidelines embrace a patient-centered insufficiency and obesity. approach, focusing on early diagnosis Early diagnosis and treatment are and comprehensive follow-up with tailored essential to prevent the progression treatment and support.2,6 The Chronic of the disease and its complications: Care Model (CCM) developed by Wagner José van Esch-Smeenge MSc. is a physical therapist and clinical health scientist who works at the Dutch Expertise Center for Lympho-Vascular medicine in Drachten, the Netherlands. She is involved in the treatment of patients with lymphedema and lipedema as well as doing research concerning lipedema. Renate Roeterink, PT and Ad Hendrickx, PT are co-authors and part of the Dutch Expertise Center for Lympho-Vascular medicine team.

Spring 2018

et al.7 and the International Classification of Functioning, Disability and Health8 (ICF) of the World Health Organization (WHO) are applied in the guidelines. In the Netherlands, the CCM model is promoted by the government, because of its proven effectiveness on patient outcomes and positive economic impact9 in the care of patients with chronic conditions.10,11 Chronic Care Model (CCM) All patients with a chronic disease make decisions and engage in behaviors that affect their health. To a significant degree, disease control and outcomes depend on the effectiveness of self-management. FIGURE 1

The Chronic Care Model

Since lymphedema is a chronic disease, the CCM can be used in treating patients with lymphedema. In the CCM the patients’ central role in their care fosters a sense of responsibility for their own health and promotes their participation. Using a collaborative approach, health care providers and patients work together to define problems, set priorities, establish Ly m p h e d e m a p a t h w a y s . c a 5

goals, create treatment plans and solve problems along the way.12 The CCM identifies the essential elements of a health care system that promotes high-quality care in chronic diseases (Figure 1).7,13 These elements involve the community, the health care system, self-management support, delivery system design, decision making support and clinical information systems. The overall result will lead to productive interactions between a pro-active team of health care providers and an informed, motivated and activated patient. In the Dutch Expertise Centre for Lympho-vascular Medicine (ECL) the CCM model is used to pursue active patient participation in treatment to increase self-efficacy and create a more “handsoff” supportive approach by health care providers, who work interdisciplinarily and use validated clinimetrics according to the guidelines.2,6

FIGURE 2

The ICF-model Health condition (disorder or disease)

Body Functions & Structure

Participation

Activity

Environmental Factors

Personal Factors

Contextual factors

is given which will lead to an improvement of functioning and QoL associated with the health condition.8,14 In the ICF model the expectation or wish of the patient holds a central place during treatment. It is important to objectify the subjective complaints of the lymphedema patient. In the ECL we set up a complete health profile for our patients using clinimetrics.

Clinimetrics is defined as: The practice of assessing or describing symptoms, signs, and laboratory findings by means of scales, indices, and other quantitative instruments. International Classification of Functioning, Disability and Health (ICF) The ICF provides a framework for human functioning as well as a classification system based on a bio-psychosocial model.8,14 (Figure 2) The ICF as a classification consists of two parts. The first part describes functioning and disability and includes three components or domains: body functions and body structures, activities and participation. The second part consists of contextual factors and includes two components; personal factors and environmental factors. These factors will influence the domains in part 1. Since the full ICF is not applicable for daily practice a specific core set for lymphedema has been developed by Viehoff et al.6,15-19 When using the ICF while working with patients with a chronic condition, patient tailored treatment 6 Ly m p h e d e m a p a t h w a y s . c a

As recommended by the guidelines6 it is important to compose a data set of repeated clinimetric measurements, which should be performed with patients who are diagnosed with lymphedema. These clinimetric instruments are used to diagnose and evaluate limitations in body structures and function, activities and participation, personal factors and environmental factors, following the ICF domains. The patient’s story and the clinimetric outcomes measured by the physical therapist are combined in the ICF model. Together this will provide a health profile of the patient. By repeating the clinimetrics over time, the patient and health care provider together can evaluate, and if necessary, customize the program.

Self-management Self-management plays an important role, and is associated with improvement in health outcomes, functional status and quality of life in patients with lymphedema.20,21 Effective self-management support demands more of the healthcare provider than simply telling patients what to do. The approach of self-management in the maintenance phase of treatment has been shown to be effective.22-24 It includes the following domains: a) activities focused on health improvement and buildup of physical resistance; b) coping with health care providers and adherence to treatment; c) ability to self-monitor, to draw conclusions from signs and symptoms, and to translate this to decisions to take action (going to a physician or self-bandaging); d) coping with the consequences of a chronic disease and trying to get control of personal, behavioral, and environmental factors. In self-management, education is of great importance in treating patients with lymphedema.20 Information, instruction, psychosocial support25 and stimulating patient self-management are key elements of therapy. Timing of education is crucial.26 The use of the stages of change in behavior and motivational interviewing can be helpful when providing education during the treatment of patients with lymphedema. It is important to know the level of health literacy of the patient. Health literacy is the degree to which individuals have the capacity to obtain, process and understand basic health information. Poor literacy skills among adults are surprisingly common in developed countries. Estimates range from 7% to 47%. Positive health Traditionally health care providers focus on curing the disease. Complaints and health problems are the topics which are discussed and how to fix them. Over time, the need for a dynamic description of health that highlights the human capacity for resilience and for coping with new situations—as we are repeatedly required to do in life—is increasingly being felt.27 Spring 2018

Using the concept of ‘positive health’, a more holistic approach is chosen. Huber et al.27 introduced this new concept of health in 2011, describing health as the ability to adapt and to self-manage, in the face of social, physical and emotional challenges’. In positive health, ‘ability to cope’, ‘resilience’ and ‘selfmanagement’ both in physical and mental health, holds a central place. Patients

FIGURE 3

The Six Dimensions of Positive Health

are asked what they want most. Using the concept of ‘positive health’, a broad perception of health can be illustrated in a web diagram.28,29 (Figure 3) The diagram exists of six dimensions: body functions, mental functions & perception; spiritual/ existential dimension; quality of life; social & societal participation and daily functioning. These dimensions can be helpful within a conversation with the patient to find his/her topics on meaningful life. The combination of the health profile and aspects of positive health gives us at the ECL (Dutch Expertise Centre for Lympho-Vascular Medicine) a good entry into treatment in a multidisciplinary way, in which the patient has a central role. Patients’ broad perception of ‘positive health’ should receive attention from the health care provider. This may prevent misunderstandings and will improve communication during treatment. The question posed to the patient is which aspect of the web diagram the patient most wishes to improve his/her situation.28

Information, instruction, psychosocial support and stimulating self-management are key elements of therapy. Conclusion Lymphedema is a chronic condition which may lead to problems in all domains of the ICF. Living with a chronic disease will require resilience from the patient. By setting up a health profile for a patient by using the concept of positive health, the ICF model and validated clinimetrics, a health care provider and patient can work together in a tailored treatment program. Treatment should contain a dual approach of exercise and education leading to patients’ self-management within the Chronic Care Model. LP A full set of references can be found at www.lymphedemapathways.ca

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Clinical Perspective

Resilience:

Learning to cope with lymphedema By Marc Hamel

he noun resilience stems from the Latin word resiliens which means, “to rebound, recoil”. In day-to-day language, resilience refers to the process of growing personally from a challenging event or circumstance. People with lymphedema are faced with many stressors which can test their coping skills and resiliency.

Lymphedema-related emotional distress: Why are people at risk? Living with lymphedema requires a person to cope with physical limitations and adjust to their condition. One must pay particular attention to the prevention of infection and make changes to one’s day-to-day functions to accommodate the physical nature of the condition. However, these adjustments also come with psychological demands, losses and reactions. It is not uncommon for persons living with lymphedema to have certain responses such as “Why me? What did I do to deserve this? Wasn’t cancer enough? Why did this happen? What will I do if I can’t return to work? If I do return to work, what will people say? I can’t do the things I used to do as before? I am becoming such a burden to others!”

How lymphedema affects resiliency Lymphedema is a chronic, incurable and disabling condition that often presents its own challenges. First, there is little public recognition and awareness of the impact of lymphedema on the lives of those touched by the condition. In some paradoxical way, lymphedema is still a “hidden” disease. Second, there is a dearth of research on the psychosocial consequences of the disease on the lives of both men “Resilience is and women affected. Finally, Living with lymphedema: not what happens there remains a lack of psychosocial issues to you. It’s how you understanding from many Such responses can lead to react to, respond healthcare professionals about a host of different feelings to, and recover lymphedema. When it comes such as anger, shame/guilt, from what to secondary lymphedema, helplessness, fear, anxiety, happens to you.” –Jeffrey Gitomer the focus is often on curing the sadness and even depression. cancer; less so on the late effects While the rate of, for instance, anxof the disease. First, one has had to iety and depressive disorders has not face cancer and its treatments and then one been shown to be more prevalent in persons must come to terms with the physical side with lymphedema than those without (see Fu effects caused by the treatments. Together, et al., 2013), living with this chronic condition this can create isolation in individuals coping can present many psychosocial stressors. with the physical, emotional and social Among these reactions it is not uncommon for impact of living with lymphedema. persons with lymphedema to experience one

Marc Hamel, PhD graduated from Concordia University, Montreal with a PhD in Psychology in 2001. His interest in Health Psychology began in the late 1980s when he began working with persons living with HIV and AIDS. Dr. Hamel is currently Clinical Director of the McGill University Health Center (MUHC) Psychosocial Oncology program, which offers professional counselling to persons living with cancer and their family members.

8 Ly m p h e d e m a p a t h w a y s . c a

or many of the following: loss of confidence in their body image (e.g., difficulty with clothing, dressing, feeling less attractive), decreased physical activity (e.g., mobility difficulties), fears (i.e., getting infections or exercising too much), problem with sleep; sexuality issues and work related issues (see Ridner 2009 for review). Another major impact of lymphedema is its visibility to others and a daily reminder that one is no longer who they used to be. How to build resilience? Despite these challenges, people with lymphedema can and do enjoy productive and happy lives. A wonderful quality in humans is our capacity to adapt; even to the most difficult circumstances. What makes people adapt? The answer is not always so clear. However, everyday people show how resilient they can be. While not exhaustive, the following are perhaps key ingredients to developing more resiliency. Taking care of the basics: Maslow’s hierarchy of needs reminds us of the importance of taking care of our most basic needs. This may seem obvious but proper sleep, nutrition, exercise and developing a regular routine is essential for developing resiliency. Exercising, for instance, may prove to be a particular challenge for people with lymphedema due to the physical limitations the conditions imposes. Accepting our emotions: As North Americans, we are comfortable with using logic when facing difficult situations but fear our emotions. Sadness and fears are often repressed, Spring 2018

avoided or pushed aside. Strength is often measured in the amount of restraint one shows over their emotions. However, psychological studies show that repressing emotions can lead to more social isolation and greater emotional distress. Resiliency requires one to be open to one’s feelings including those of anger, fear and sadness, and to remember that persistent feelings of sadness or anxiety do not go away by themselves. There is no shame in experiencing difficult emotions. With lymphedema comes a host of emotions that need to be recognized and expressed. Seeking social support: Resilience can grow from sharing one’s story with others. There are many psychological studies showing the healing benefits of having a confidant or network of support. Nothing soothes the mind and soul more than sharing one’s emotions with someone who cares. The wonder of support groups proves how beneficial such support can be to someone who feels isolated in their condition. There is real strength in numbers and healing as well.

Practicing mindfulness and living mindfully: There is a great deal of talk about mindfulness and its positive effects on stress, pain, anxiety and illness. There are countless workshops, retreats and books on the practice and benefits of mindfulness. Jon Kabat Zinn (1994) defines mindfulness as “the act of paying attention in a particular way, on purpose, in the present moment, and non judgmentally”. The practice of mindfulness can help build resilience as it offers one the opportunity to interact with oneself, others and the world in a different manner. Specifically, mindfulness teaches us about the importance of living fully, in the present moment and without judgment. It also emphasizes the importance of developing more self-compassion. Practicing mindfulness and living more mindfully can make coping with lymphedema easier. Psychological flexibility: Another growing psychological concept is that of psychological flexibility. Taken from the work of Steven Hays’ Acceptance and Commitment Therapy-ACT,

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psychological flexibility refers to “contacting the present moment fully as a conscious human being, and based on what the situation affords, changing or persisting in behavior in the service of chosen values” (see Hayes et al., 1999). In other words, psychological flexibility is an approach whereby one observes one’s emotions, as opposed to avoiding them, and acts according to one’s chosen values. Lymphedema does not have to define one’s whole identify as a person. The person can still choose to live according to their values in spite of having this condition. Conclusion As with any chronic condition, living with lymphedema can be difficult and demanding. However, people can adapt and learn to bounce back from any challenge. Is there a secret to developing resiliency? That secret lies within each of you. Make living with lymphedema your own story of resiliency. LP A full set of references can be found at www.lymphedemapathways.ca

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Ly m p h e d e m a p a t h w a y s . c a 9

Conference Report

Report of a roundtable discussion Canadian hospital-based lymphedema programs Experience-based recommendations By Marie-Eve Letellier and Anna Towers

t the National Lymphedema Conference held in Montreal on October 27-28, 2017, the lunchtime working session on lymphedema hospital programs had a very good and higher than anticipated level of participation. In addition to being involved in the face-to-face discussions, those present were also asked to fill in a written questionnaire describing their program. Anna Towers led the discussions, with Marie-Eve Letellier taking notes and analyzing the written questionnaire data. Approximately twenty Canadian hospitalbased lymphedema therapists (mostly from Quebec and Ontario, and one each from Alberta and Newfoundland) shared their experiences in setting up and running their programs. Most of the participants were physiotherapists, with some occupational therapists, kinesiologists, massage therapists and nurses also contributing to the discussion. The majority had between five and ten years of experience in lymphedema assessment and treatment. Not surprisingly, most of the hospital settings are seeing cancer-related lymphedema (primarily breast cancer), with only two sites seeing exclusively non-cancer

Table 1

Facilitating Factors On setting up

Presently

• Supportive colleagues (nurses, physicians) • Patients • Provincial lymphedema association • The need for the service • Mentorship from another hospital

• Positive treatment results • Reduced hospital costs • Policy: essential service • Recognition by peers • Increased scientific knowledge

Table 2

Challenges On setting up

Presently

• No time, no money, no space • Lack of diagnosis/awareness from the medical team • Multidisciplinary team not established (e.g. fitters, therapists, doctors)

• Budgetary constraints • Lack of dedicated time/resources for therapy (space, material) • Late referrals • Long waiting list

patients (e.g. primary lymphedema, trauma, chronic vein insufficiency (CVI)). The hospital programs have mostly been established within the last decade. Four sites have the privilege of seeing their patients pre-surgery and offering ongoing monitoring. Ten sites see patients only once lymphedema occurs.

Marie-Eve Letellier, PhD has a degree in kinesiology and a PhD from McGill University in rehabilitation sciences. As a lymphedema therapist (Vodder trained as well as certified in Aqua Lymphatic Therapy), she is combining clinical work and research at the Breast Clinic, Royal Victoria Hospital, Montreal. Anna Towers, MD is Associate Professor of Oncology, McGill University and Director of the Lymphedema Program, McGill University Health Centre (MUHC), Montreal.

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There are a wide variety of services offered, however, all hospitals are providing education (e.g. in self-management, risk reduction strategies) and are giving information one-on-one (e.g. lymphatic system, garments). Seven sites are also providing group based sessions. When therapy is required, most of the programs are providing some components of decongestive lymphatic therapy (DLT), with 12 offering the full course of treatment, while two sites are referring to the community for therapy. In most of the hospitals, when DLT is performed, patients must pay the costs related to the bandaging supplies, and they are then directed to community garment Spring 2018

If you are already established, please share your experiences with others, as together we will strengthen the extent and variety of services offered. fitters at the end of the intensive therapy. After having a show of hands for “demographic” and “descriptive” information, the discussion then opened on what were the facilitating factors both in setting up the clinic and in current practice (Table 1). Participants were asked about the challenges faced at the beginning and those faced now (Table 2). Many topics were mentioned. The tables list the most common ones. With the current budgetary constraints faced by provincial health care systems, lymphedema programs are “surviving” because the need is recognized. About half of the hospital lymphedema programs are funded through the hospital budget and the other half through charities (requiring fundraising). Whatever the funding source, programs are facing issues of sustainability. This problem was not resolved during our session! Group discussion then turned to what to prioritize in the services provided to try to be as cost- effective as possible within the time and budget constraints. The trends are on providing education (e.g. patients, medical team), compression treatment, and encouraging patient self-management. The group then tackled the question of how to elicit greater support for their programs. Some of the proposed strategies include: working in closer collaboration with provincial lymphedema associations, and, definitely, increasing the level of lymphedema awareness and knowledge amongst health care professionals (e.g. nurses, physicians, physiotherapists). Knowledge regarding all types of lymphedema (e.g. primary, secondary— trauma, obesity, CVI, cancer) is needed. Spring 2018

In cancer related lymphedema, there is also a need for pre-operative education/ measurement. In addition, for all lymphedema patients, full coverage of compression garments was on the “wish list”. In conclusion, if you are considering starting a lymphedema program in your hospital, you may wish to consult the following useful document by the International Lymphoedema Framework: www.lympho.org/portfolio/developinga-lymphoedema-service/. Also consider being mentored by another therapist (e.g. one already established in a nearby

hospital, or one more experienced). If you are already established, please share your experiences with others, as together we will strengthen the extent and variety of services offered. We wish to thank all the participants. This first meeting opens the door to further discussions at the national and provincial levels. For example, most of the hospitals are using their own “in-house” information documents. Awareness will be raised if one day all of us can be on the same page! Read, share, discuss, teach, but let’s not be alone in treating this important condition. LP

L y m p h e d e m a p a t h w a y s . c a 11

Clinical Perspective

Living well with lymphedema: skin care secrets

Based on clinical experience By Robyn A. Smith This article is based on a presentation given at the National Lymphedema Network 2017 annual conference Patient Summit held Oct 18-22.

kin! Anatomy class tells us it’s the largest functioning optimally? The skin changes organ in our body. It alerts us when the that come with lymphedema add additional pan on the stove is too hot to hold, it allows challenges to keeping skin doing its assigned us to feel the softness of a baby’s cheek or job. One of the four facets of Complete the pat on the back for a job well done. When Decongestive Therapy (CDT) is skin hygiene; I was a child, I used to think our skin was a so let’s look at several ways you can keep solid, plastic-like wrapping that kept all of our your skin in top form. insides in place and if it got a puncture in it, such as with a vaccine injection, that all of Read the labels “me” would “leak” out. But when I became First and foremost, we need to become a teenager interested in anatomy experts at reading product labels. studies and later a health care Fragrance in products is a no-no. practitioner, I learned my Are you aware that a product childhood understanding can proudly list UNSCENTED couldn’t have been farther on the front label of the from the truth. Skin turns out product whilst still adding to be a stack of cells that are fragrance? Two different better described as a brick wall categories of product fragrance with a flexible mortar of lipids exist, each being treated Brick-like pattern of the skin differently in declaring that allow for a transference Mortar: Lipids of elements in/out of the a product unscented. Bricks: Skin cells body. That brick wall is Fragrance added for the further covered in a naturally occurring, protective acid barrier that stymies most bacteria before they even have a chance to invade the insides of our body. It is a fortress that miraculously heals a breach in the wall when required and even thickens up that wall when more protection is needed. Amazing! However, what if that skin is not

express purpose of making it smell pretty is called “scent”. Fragrance added to mask the medicinal smell of some ingredients is called “masking fragrance” and can be added and still considered unscented. Think of the front label of a product as the marketing label, the one designed to make you want to buy the product. It’s the back list of ingredients that

Robyn “Redd” Smith, MEd, COTA/L, CLWT, CLT is an Occupational Therapy Practitioner, Certified Lymphedema & Wound Therapist (CLWT) and owner of Life Rehabilitation, a private lymphedema practice located in Salt Lake City, Utah, and is also the Clinical Education Liaison for SIGVARIS, INC.

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CAUTION Given that there is little evidence-based literature regarding many of these practices, the majority of the recommendations/tips must at this time be based on the knowledge of pathophysiology and decades of clinical experience by experts in the field. As with any other suggestion, use your judgment and if in doubt, consult a health care professional.

we really care about, as it is required by law to be factual and non-misleading. Also important is the ingredient’s placement in the ingredient list as they are listed in the order of percentage in the product. Key point to remember? Carefully read ingredient labels on the back before using any product. Keep it clean (but not too clean) Keeping your skin free of the microorganisms that can cause infection is an important part of skin care. However, over-cleansing can also do damage. The skin’s acid barrier is the first defense our bodies have against the germs that surround us; most bacteria cannot survive for long in a high-acid environment. Over-cleansing can wash away that natural protective barrier and allow bacteria to sneak in between the “bricks” of our skin cells. There are several low pH, non-allergenic products available that allow the acid barrier to safely remain in place. Talk to your pharmacist or dermatologist for specific recommendations. Balancing moisture—don’t sweat it! Picture that brick wall again. The skin cells are held in place by a mortar of epidermal Spring 2018

Brick and mortar-like structure of normal skin. lipids. Lipids are the naturally occurring fats/oils that provide a barrier against the inadvertent movement of water and electrolytes out of the skin as well as a barrier against microorganism invasion into the skin. Dry skin allows in pathogens that love nothing more than overwhelming your immune/ lymphatic system; keeping invaders out is paramount! Keeping your skin moisturized is your way of fighting back. Whether your personal preference for moisturizers is using thick creams or ointments, both work equally well. Apply moisturizing products anytime your skin feels dry or visually appears to be dry. If it looks dry, it is dry. However, sometimes dry skin is not the trouble. Skin can also be too moist. Skin folds common to lymphedema often lead to overly moist areas caused by perspiration. This moisture can lead to a condition called intertriginous dermatitis (ID) or intertrigo, an inflammatory condition of skin folds, induced or aggravated by heat, moisture, maceration, friction, and lack of air circulation. Unfortunately, if that moisture is left without care, it When cleansing a few rules apply: 1 Always wash top to bottom (to avoid irritating hair follicles and developing folliculitis) 2 No extreme hot water on areas with lymphedema (hot water = more blood to area = more fluid to leak into tissues) 3 Wash gently – do not use loofahs or other exfoliating means which will cause further damage of the skin “bricks” and breaking down of the acid barrier.

Spring 2018

will progress from an area of redness, to rash, skin breakdown, then unhappily ending in an open wound. Further, this unwanted moisture in the skin folds forms a perfect breeding ground for infections, both bacterial and fungal. There are two ways to deal with this excess moisture; control the moisture and/or protect the skin from direct contact with the moisture. There are products available with moisture wicking fabrics that also contain antimicrobial silver. A single layer of cut-to-size fabric is

Dry skin allows pathogens to enter the body between the skin cells. tucked into the skin fold with a small portion of the fabric remaining outside the fold. The fabric then wicks the moisture from inside the fold to outside the fold, which then evaporates. Antimicrobial silver keeps the microbes from attacking and keeps the odor at bay. Sometimes there is just no way to keep moisture at bay, whether from perspiration, urine or lymphorrhea. Using a skin barrier cream can protect the skin from breakdown and allow the moisture to evaporate or be drawn into incontinence briefs or dressings. There are products available in the form of ointment or protective wipes. Functioning primarily as a barrier to moisture, specific ointments are quite calming to the skin decreasing itching due to dry skin. However, ointment form does not allow for use where a wound dressing or even a simple Band-Aid is needed. In that case, there are protective wipes available that are wiped on the skin around a wound and quickly dry into a protective layer. These ‘protective’ commercial wipes should be prescribed as they often contain sensitizers such as MCI. One reminder about scratching. If you absolutely cannot leave that itchy skin alone, use the pat or push method to stop that itch.

Gently pat the area or firmly push on it. Never use your fingernails to scratch. To heal or not to heal Whether we call it weeping, wetness or by its proper term of lymphorrhea, that leaking of yellow-tinged fluid onto the skin is something that must not be ignored. One of our lymphatic system’s main jobs is to break down dead cells so they can be returned to the blood stream and be excreted out of the body via the kidneys. Wait! Isn’t skin made up of proteins? What happens when lymph fluid leaks out and becomes lymphorrhea (translated as “lymph flowthrough”) ending up on the skin? It continues its job of breaking down protein on your healthy skin. What starts as a tiny drop of fluid can progress from a tiny red spot on the skin to an open wound only days later. Lymphorrhea’s caustic properties make caring for it of critical concern. Lymphorrhea needs to be removed from the skin quickly and additional leakage controlled properly. What happens if lymphorrhea leaks have started in several places on the limb? The proper protocol is to place an absorbent dressing on each wound to keep the fluid from pooling on the skin and then, add enough compression to counter the pressure that is causing the leakage. If the area has progressed to a larger area of skin breakdown

Lymphorrhea. requiring more than just a spot dressing, keep the dressings just the size necessary to cover the wound. Use skin prep wipes around the actual wound margin and place the smallest dressing possible to protect the wound. Apply an absorbent pad that contains modern starch polymer technology (used in diapers and incontinence pads) so that the moisture is locked away. Problems can also be avoided by more frequent changes. If several areas of wound dressings are necessary, the use of an underliner stocking will protect the dressings from being pulled off when donning/doffing L y m p h e d e m a p a t h w a y s . c a 13

Whether we call it weeping, wetness or by its proper term of lymphorrhea, that leaking of yellow-tinged fluid onto the skin is something that must not be ignored. the compression garment by allowing the compression to slide easily over the dressings. An ounce of prevention Sometimes the greatest amount of prevention can be enjoyed from the smallest of changes in our lifestyle. Some of the changes that will slow future progression and lessen the complications of skin breakdown, lymphorrhea flareups, or hospitalizations due to cellulitis can be made simply and immediately. •W ear insect repellent and high SPF sunblock whenever you are outdoors. A simple mosquito bite or a sunburn can sometimes be the catalyst for a huge increase in swelling.

•W ear protection on your hands and/ or feet whenever there is a chance of damage; gloves when working in the garden, washing dishes, or washing the car; shoes anytime walking outdoors and preferable indoors as well. Keep hands and feet from extremes of temperatures whenever possible. Many times, there is a loss of sensitivity in lymphedematous skin that can lead to injury due to the loss of warning feedback from your skin. •W ear compression at the prescribed level/ dosage and duration requested (daily/ day and night). Most people diagnosed with lymphedema are advised to be in compression garments, whenever out of bed and preferably 24/7 for improved outcomes. Without compression, the other elements of your lymphedema therapy are destined to remain a rollercoaster ride of skin breakdown and wound eruptions that may take months to heal. There are so many options now available for those needing compression, that excuses for not wearing (too hot or otherwise uncomfortable

or unfashionable), are no longer valid. • T horoughly check your skin each night for new redness, lymphorrhea or other problems so you can address them immediately. Vigilance allows you to catch a small problem and stop it from it becoming an emergency. • T reat funcal infection of the feet quickly. •M easure your limbs weekly or monthly as directed by your physician or lymphedema therapist and keep a chart of your progress. If a negative change is seen you can be confident you have caught it early and you can involve your lymphedema therapist or physician in developing a plan of care. Wrapping things up—a few final words That amazing fortress you call your skin is silently protecting you from the hordes of microorganisms that want to wreak havoc to your lymphatic system. With gentle care, proper products, small changes to your routine and an above average amount of vigilance, you can ensure that nothing bad gets in and nothing good leaks out. LP

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Researchers Profile

Profile of a Researcher: Marie-Eve Letellier

Montreal-based lymphedema researcher Marie-Eve Letellier, PhD, obtained a Bachelor’s and Master’s degree in Kinesiology and her PhD in Rehabilitation Science. She oversees the “kinesiology clinic” at the Breast Clinic, MUHC, Montreal. She is also working at the Lymphedema Clinic with Dr. Anna Towers and in a private multidisciplinary clinic.

I continued working as a research assistant and got involved in other research projects related to breast cancer and lymphedema. After a few years, with my interest and curiosity for that expertise, I pursued doctoral studies in Rehabilitation Sciences at McGill University. My thesis was on arm dysfunction (e.g. range of motion issues, lymphedema and pain) after breast cancer treatments and the impact on quality of life. What prompted your interest in During my PhD, I was approached to start doing research on lymphedema? an “arm dysfunction risk reduction strategies and lymphedema treatment” clinic (simply My lymphedema journey started in called Kinesiology clinic) at the Royal Victoria September 2004, as a new Master’s graduate. I was looking for job opportunities in Hospital, which I launched in September 2008. Then, I started to wear two hats: kinesiology (science of movement) or health researcher and clinician. related fields. I saw a posting to become a research assistant for a breast cancer What impact do you hope research project. I seized the opportunity and applied, as for me it was a salute to your research will have? my grandfather who died of cancer many Our main goal is to reduce arm dysyears before and who always had an interest function. However, being in a university in research. This is where I met Dr. Anna hospital, the research that we are conducting Towers, with whom I have been working/ is not like the “typical” research setting but collaborating since. rather involves research including clinical In kinesiology, I learned how to assess an data collection used to conduct retrospective individual’s physical condition, learned studies. We are fortunate that we are seeing about health-related conditions to pay attention breast cancer patients from before their to when you are exercising (e.g. diabetes, cor- surgery through to full recovery and/or for onary problems, pregnancy), but I was never at least two years post treatment. introduced to cancer and its consequences. We will never be able to “prevent” So, I was starting this new challenge of learnlymphedema, as there are too many variables ing about breast cancer and its treatments’ involved (e.g. surgery, radiation, chemotherapy, side effects when Dr. Towers age, comorbid conditions), so our efforts are mentioned a word about focused toward risk reduction strategies to pre“lymphedema.” She invited vent the development of arm dysfunction. With me to join her for one of her the possibility of seeing patients before their clinics… it was a “shocking” surgery, or as soon as possible after, and revelation for me. At that time, there were following them over time, there is a huge not many therapists in Montreal (Quebec). positive impact on patient awareness. As we I decided to become a lymphedema theraeducate patients on signs and symptoms, safe pist, for which I did all my Vodder and aqua and effective exercise and self-management, lymphatic training in 2005. they become aware of possible dysfunctions,

Q A

and we can intervene relatively fast if something occurs, minimizing the consequences. Being constrained to hospital reality, we must be creative and seize opportunities to improve our services, maintain a short waiting list, and work according to the best evidence and best practice. Because of our time limitations, we conducted two pilot projects regarding alternative therapies: 1 Cohesive two-layer bandaging (e.g. 3M Coban, Jobst Comprilan) 2 Breathable neoprene garments (Velcro type garment, e.g. reduction kit, Farrow-wrap) We found that both these approaches to compression are functional in our clinic, with significant arm volume reduction. To obtain great results, we emphasize our proactive educational approach. We encourage our patients to become autonomous in their lymphedema management. A down side of our approach is that it is slightly longer than the conventional Decongestive Lymphatic Therapy (DLT), as we are seeing patients only once a week for an average of six weeks. Our work/research aims to improve the standard of care for breast cancer patients. We see, from the literature and with the work we have accomplished over the last years, that: •U ltimately, pre-operative assessment should be performed for any type of cancer-related surgery. • F ollowing patients over time improves arm dysfunction and reduces the anxiety regarding it. •P roviding education increase patients’ awareness about arm dysfunction. • I n the eventuality that lymphedema develops, we ultimately reduce the burden of living with it. LP

This was a brief overview of our past and present experience. What we know today, might be wrong tomorrow. However, we will be there to follow the evidence.

Spring 2018

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

Therapist’s Perspective

Laughing lymphercise And the French connection By Rosemary Kelly

aughing Lymphercise™, is a gentle exercise program originally designed for breast cancer patients/survivors, blending sprinklings of laughter with movements recommended by physiotherapists and Decongestive Lymphatic Therapy schools such as Vodder, Casley-Smith and Földi. The focus is on lymphedema (LE) awareness, prevention and management, as well as providing local LE resources for participants such as a list of MLD therapists, garment sleeve fitters, lymphedema support groups and financial aid information like the Assistive Devices Program (ADP) in Ontario.

Photos: Korby Banner

Why laughter? The lymph in our bodies is propelled towards the heart through muscular movement and deep breathing. In India, at the Institute of Applied Dermatology (a renowned lymphedema clinic), pranayama exercises (controlled breathing) are an integral part of treatment to stimulate lymphatic flow.

The same results can be achieved through laughter: located above the diaphragm is the thoracic duct, the largest lymphatic collecting site in the body. Research proves that diaphragmatic breathing creates a negative pressure within the thorax, pulling lymph into the duct and then propelling this lymphatic

Rosemary Kelly has been teaching cancer survivors about Lymphedema risk, prevention and management and the benefits of laughter and movement for over 15 years through classes, workshops, articles, online symposia and conferences in Canada, the USA, England, France and India. She is also the external advisor for the Indian charity Race to rein-in-cancer. Please visit her website www.rosemarykelly.ca

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fluid out into the body at a greater rate than the normal lymph flow. Deep belly laughter helps to move the diaphragm thus increasing the flow of lymph into the thoracic duct.1 The uplifting benefits of laughter are well known, and I found that within the cancer support centre environment, people were attracted to a class that offered laughter in conjunction with gentle movement and music. Some women were not drawn to support groups per se, and Laughing Lymphercise can become an inadvertent support group with friendships developing over coffee and sometimes lunch after class. I taught regular weekly Laughing Lymphercise classes mainly in Toronto, Kitchener and Cambridge through cancer support centres. I was also invited to various cancer support groups in cities like Guelph and Mount Forest where I would present workshops, and I also introduced the program at International Breast Cancer conferences and Lymphedema Conferences where I enjoyed a very happy teaming up with the LAO. Meeting people from all over the world at conferences ended up taking me and the program to places like England and India; some of you may have read my article in the Pathways Summer 2014 issue. Spring 2018

Last year I was invited to France, to train in depth self-care education. The Thermal two women who wanted to become Laughing Centre is in a historic building that has been Lymphercise instructors. This was a very updated as much as possible without taking unusual circumstance, as normally trainings away from original protected architectural take a lot of planning, require more than just features. Primarily a medical centre it two people and are usually done in English. differs from what North Americans envisage But I am a bilingual Montrealer, these women as a luxury health spa: here a regimen is were already Laughter Yoga instructors, prescribed according to the individual and so they had a great knowledge base and a doctor follows your progress over three classroom experience, and I thought it would appointments during a three week (18 day) be fun to say yes! I am very happy to report treatment session. that the encounter was extremely positive, It may seem counter intuitive to travel long and Pascale Poinsot-Lesterle and distances for lymphedema care when we Marie-Thérèze Latecoere-Donnadille are know that long-haul air flights may increase wonderful teachers. (www.yogadurire65.com) swelling. I imagine though, that there are Our work culminated with a many frustrated, adventurous lymphedema large Laughing Lymphercise patients who would really enjoy workshop sponsored by combining medical lymphedema the cancer hospital during thermal spa care with stunning Octobre Rose, breast cancer views and French village life. That awareness month, so it was is why I wanted to tell you about very worthwhile, and the bonus it because it was a revelation! was the discovery of a dynamic Currently there is only one Lymphedema care community regular Laughing Lymphercise in the Hautes-Pyrénées, in a class that I am aware of town called Luz St Sauveur, that continues in Kitchener 800 metres above sea level, on Thursday mornings. For south of Lourdes, based in a personal reasons, I have not Luzéa thermal shower. Medical Thermal Spa called been available to teach ongoing Luzéa. (www.thermesdeluz.fr) classes recently. I do answer questions Huguette Savoie and Marie Laure via my websites www.rosemarykelly.ca and Barraillé are the therapists leading a team www.laughing-lymphercise.com and give providing therapy using every imaginable people suggestions on alternatives to water delivery system: individual jet baths Laughing Lymphercise. I hope to get back and massage showers, a swimming pool, a to regular teaching next year. walking pool, a Jacuzzi and Hydrojet massage Since Laughing Lymphercise classes are beds, combined with the most up to date, not taught everywhere, I am often asked and ever evolving, lymphedema therapy: about exercise alternatives, post-surgery, for manual lymphatic drainage, bandaging, and people at risk of lymphedema. Basic rules for a safe exercise class are simple enough. First, drains must be out and incisions must be healed. Do exercises sitting on a stable chair, or standing near enough to it that you can hold on for balance. Exercise is not a competition, so, in a group setting, try to ignore what everyone else can or cannot accomplish, and only do what feels comfortable for yourself, avoid floor work (pushing yourself up off the floor) in the early stages of your recovery. Slow movements are best so that you can be aware of your point of pain and not go past it, in order to avoid ripping and tearing scar tissue and other injury. Tai Chi and Qi Gong Spring 2018

“ So, breathe, laugh and move, dance around the living room and feel better.”

Luzéa main relaxing room. are excellent choices. Seated exercise classes are a good option and of course, movement in water is brilliant. As long as whoever is teaching you knows about lymphedema and is able to suggest modified movements for you, great. Never fatigue the affected or at risk limb and always wear your compression while exercising (on land). Listen to and watch your body. On the subject of Laughter Yoga, I feel that a regular laughter yoga class can be too physically intense especially soon after surgery. If you have a laughter yoga teacher who knows about lymphedema and offers adapted or shorter, classes, great! I have always ‘prescribed’ comedy shows and movies. When women contact me soon after a cancer diagnosis and learn about the health benefits of laughter, they are delighted to be able to convey this message to their loved ones so that everyone feels that they have permission to laugh. This lifts the atmosphere in the home and gives family and friends a way to cope during in a very hard time. So, breathe, laugh and move, dance around the living room and feel better. LP References 1. Lymphoedema edited by Karen Jenns, Robert G. Twycross, Jacquelyne Todd. L y m p h e d e m a p a t h w a y s . c a 17

Ask the Expert

Surgical Summary

From the 2017 Canadian National Lymphedema Conference Dr. Alex Munnoch addresses questions regarding surgery approaches

deally, surgeons findings. However in almost every USA need to be working city now, there is a plastic surgeon in partnership as offering some form of lymphedema a multidisciplinary surgery. Yet, they never attend any of the team. Its no good national or international lymphedema having a surgeon do conferences, they are not presenting the surgery and sendresults, and therefore you have to question ing the patient back what is actually going on, because without any they’re not being judged by their peers. information as to what his manIn reconstructive techniques, agement should be, what to don’t believe surgeons who do with their garments, say “you’re going to Ask what the etc. So many surgeons get 100% reduction,” post-op care do the surgery, send because that doesn’t requirements are them off to a therapist, happen. At best, you and what therapy then see the patient might get a 50 - 80% do they expect once and never see reduction, at worst, them to treat them again. How can if you’ve got no edema their patient. we really expect this to be left in your leg and successful? It’s much better it’s all fatty and you get working in tandem, selecting the the reconstructive technique, appropriate patients and then collecting your leg might stay the same, and outcomes and monitoring the patients you might get away with wearing a more long term. lighter compression garment, or no There are some surgeons who are compression garment, and you’ll have well known and well respected within reduced instances of cellulitis. But if limb the lymphedema community. They get bulk is your main issue, it will remain good results with their surgery techniques the same. This is the same with the and are eager to share and publish their liposuction techniques.

We’re not trying to cure the lymphedema, we’re just trying to reduce the bulk. It is important to find a surgeon who is not only able to get good results, but is able to provide the post-operative care and over all management in order to get the results that are desired. Patient compliance is another important aspect. There’s no point in doing surgery if the patient is not going to work with the surgeon and therapist together. Therapists need to provide feedback regarding their patients back to the surgeons and encourage them to be part of the surgical team. Ask what the post-op care requirements are and what therapy do they expect them to treat their patient. Do your research on surgeons. Look at the surgeons, look at the results they’re publishing, speak with a therapist. Find out if that surgeon is working with a team, what is their post-operative regime, because that is vital if you’re going to get the results you’re expecting. LP

Dr. Alex Munnoch FRCS Ed (Plast) is a consultant plastic surgeon at Ninewells Hospital (Dundee, Scotland) providing surgical treatments for lymphedema patients for the past 13 years. He has presented his results at numerous national & international conferences and most recently at the Canadian National Lymphedema Conference Fall 2017. He is currently a member of the executive committee of the International Society of Lymphology.

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Spring 2018

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Kathy Bates Talks of Her Toughest Role Yet

scar-winning actress Kathy Bates felt pressured to stay silent when she was first diagnosed with ovarian cancer, but now she’s speaking out for women everywhere. Her close friend urged her to visit the doctor, and if she hadn’t, she may not be here today. “She saved my life,” says the American Horror Story star. She had been feeling flushed and tired, but thought it was due to work. “It would have been easy for me to write off all of those things if she hadn’t been there.”

Photo: Keith Munyon

From tragedy to inspiration Despite testing negative for BRCA 1&2, Bates was diagnosed with breast cancer nine years after surviving ovarian cancer. “I want women to know that a test is not a get out of jail free card,” she says. “ I was less vigilant. I really wished I had caught it earlier.”

This content was featured in the April 2018 edition of Maclean’s Magazine and reprinted with permission from Mediaplanet Publishing House.

Lymphedema – Under the Radar

ymphedema affects men, women, and children — approximately 120 million people worldwide, and yet is under the radar,under-funded,and under-researched. For an estimated one million Canadians,lymphedema is a growing and complex problem in need of coordinated prevention and treatment. Founded in 2009, the Canadian Lymphedema Framework (CLF) is a collaboration between health professionals, community-based organizations, patients, and industry partners. Its mission is to improve the standards of lymphedema management by promoting research, best practices, and clin-

ical development. Organizing educational conferences and publishing the Pathways magazine helps address the knowledge gap surrounding the chronic condition among physicians, allied health professionals, and patients. Though cancer treatment was previously considered to be the most common cause of lymphedema, it is becoming greatly overshadowed by lymphedema caused by the rising obesity rate. Despite this growing problem, recent advances in diagnostic imaging, surgical techniques, possible drugs, and our ability to predict lymphedema provide hope that how we detect, treat, and manage lymph-

“When I got breast cancer, I was inspired by women who go out with bald heads.” She believes each appearance or opportunity can remind women to pay attention to their bodies. “I would urge women to make that part of their regular checkups, as well as breast self-exams.” Her next role Bates also became an ambassador for the Lymphatic Education & Research Network (LE&RN). Lymphedema can affect up to 30 percent of breast cancer survivors. “The challenge is getting the word out,” she says. Bates feels lucky to have a less severe case of lymphedema, and hopes speaking about LE will help educate the public and physicians. “I’m grateful my hardships have given me a purpose. Funny how that happens.” Sherry Li

Anna Kennedy Executive Director, Canadian Lymphedema Framework

edema in the future will improve greatly. Left untreated, lymphedema tends to progress in volume and severity, leading to loss of limb function, chronic infections, skin changes,and wounds.As well as debilitating physical effects, lymphedema also causes psychological distress, which can profoundly affect one’s quality of life. While lymphedema can be managed with early diagnosis and diligent care of the affected limb, there is currently no cure. Recommended treatment involves specialized massage and compression, such as combined decongestive therapy, to improve lymphatic

drainage. Self-management is fundamental in caring for lymphedema, and the provincial lymphedema associations across Canada are an essential element in providing support, education and access to resources for patients across the country. Volunteers work hard to raise awareness for lymphedema and advocate for equitable access to care in their provinces. Their efforts are helping to change the face of lymphedema in Canada. Anna Kennedy

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Lymphedema, Affecting Millions, Understood by Few

Chronic but manageable “Lymphedema manifests as chronic, lifelong swelling and inflammation of various degrees,” she says. It is caused by a buildup of fluid that occurs when a patient’s lymphatic system cannot function as it normally would.According to Dr. Towers, lymphedema can affect patients on any part of the body, but most commonly affects an arm, or one or both legs. Make no mistake though: lymphedema is not simply a cosmetic problem. “It can lead to loss of function, inability to work, chronic wounds,and infections of the skin and underlying tissues that can be life-

threatening,” says Dr.Towers. Since lymphedema is a chronic condition,it requires lifelong management and support to treat it. Watching your weight and exercising are important steps to treating lymphedema, in addition to using compression garments,bandaging, and other treatments recommended by a lymphedema specialist. Dr. Towers says some health professionals are not aware of how common the condition is and often miss out on opportunities for early diagnosis. In fact, patients “can be referred for treatment very late or not at all.” Those who’ve been treated for cancer and have had lymph nodes or vessels removed, or affected during treatment are at a lifelong risk for lymphedema. More awareness, earlier detection Because of the gap in information on lymphedema,Dr.Towers says there is little or no coverage under Medicare for proven decongestive lymphedema therapies however, she believes that “with better awareness and education, chronic edema will be prevented or managed in the early stages, before complications develop.” Those afflicted with lymphedema can learn more about treatments offered in their area by visiting the webpage of their provincial lymphedema associations. Rob Csernyik

Dr. Anna Towers Director of the Lymphedema Program, McGill University Health Centre (BSN)

“

r. Anna Towers is an expert on an ailment that impacts an estimated one million Canadians, but is understood by far fewer: lymphedema. Dr. Towers is a Director of the Lymphedema Program at Montreal’s McGill University Health Centre, where she’s been running lymphedema clinics since 1995. About 160,000 of lymphedema diagnoses are cancer-related,representing side effects of cancer surgery or radiotherapy. Other causes can include obesity or chronic venous disease of the leg. Dr. Towers works on a team that assesses and recommends tailored therapy to patients who have lymphedema as a complication of cancer treatments.

With better awareness and education, chronic edema will be prevented or managed in the early stages.”

PERSONALHEALTHNEWS.CA

Pathways Survey Says... The Canadian Lymphedema Framework has published the Pathways magazine for six years. This Spring 2018 issue marks the 26th issue of the publication. Last fall, we surveyed our readers to understand more about which topics and interests are most relevant to them. We thank the 47 respondents from across Canada and the United States, who took the time to provide their valuable feedback. Helpful

Suggestio

Hints an d Tips

Sports shirts Medical compression shirts for trunca lymphedema l be very expenscan ive. Sportswear like the Nike Pro shirt well for some work more afforda people and are ble. You might consid buying a few sizes er smaller to compression add the element. allows it Also the to go V-neck worn... and almost unseen when it comes in a bunch Adapted from Lymphw of colors. ars.blog spot.co.uk

Pampering yourself Take time to pampe r your lymphe by doing things like rubbing moistudema leg lotion on your legs, rizing painting your toes

Dr. Vodder

a cheerfu l color, socks. Lymph or wearing soft, comfy can becom edema maintenance to yourse e an extens lf! Withou routines t the when using ion might be a compression of “me-time”: much more resentment you manual with your compliant pump or lymphatic treatment doing drainage, time to read routine so swellin g could improv , a few chapte use it as catch up Living with rs of a book e, on the latest lymphedema too. or favourite episode sometimes may TV show. of your feel as though lost contro It may seem we’ve l over our silly but things really lives and our bodies doing these helps re-fram , but might think exercising about your e the way you selfyour body lymphedema care and — it’s like accept and a little peace way to regain ance is a great offering it. Adapted from www.the Send us lymphielife.com your hints Why not and tips make it easier sharing your for those living with practical patients, lymphedema day-to-day caregivers living tips by and health suggestions with professionals us? We invite and photos to to pathw ays@canada send in your lymph.ca.

Photo: Nike

Top five most often read types of articles were: Research Advances, Did You Know, Personal Stories, Ask the Expert and Hints and Tips.

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Torso Balance of articles relevant in each issue to therapists and patients: 60% rated a score of 4 – 5 for achieving balance. School

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Topics for future issues: How individuals deal with lymphedema, latest treatments to remedies to cope, travelling safely, tips for flying, resources for clothing, shoes etc., research topics and results. Advertising power: 82% of health professionals and 80% of patients said they became aware of a new product or service via Pathways and that they either recommended or purchased a product because of the advertisements.

Usefulness: Compared to information on similar topics they get from other sources, 74% of respondents said Pathways was more useful. 69% of patient readers use Pathways to supplement other sources of lymphedema information and stated the magazine helped them to understand an issue, problem or trend. However, 90% of therapist readers used Pathways to supplement their other sources of information and share articles with their patients.

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Congratulations Carla Hathaway for winning the draw for a $100.00 Indigo Gift Card.

Online version: Only 23% have read the magazine online and 35% were not aware of an online version. Why do we continue to distribute print magazines? The majority of readers save issues of Pathways for future reference and share magazines with patients, friends, family members or their doctor.

Spring 2018

Patient Perspective

Plant-based inspiration A lymphedema diagnosis that led to entrepreneurial success By Amy Beaith

ife with lymphedema is hard. It can feel like an uphill battle sometimes and it’s a condition that you need to work at everyday. I’m sharing my story of how I have learned to live well and thrive with lymphedema in the hope that it will help you too. I’m a mom of 2 bright little girls, Iris (3 1/2 years) and Sage (2 years), and have bilateral primary lymphedema that I developed first in my left leg at age 5 and then in my right leg at age 30. I maintain my lymphedema with an intensive skincare routine and regular exercise. Deep water aquafit, rebounding, and cycling are my favourites! I also go for regular manual lymphatic drainage, wear compression night and day, and in the last 2 years, I adopted a vegan and gluten-free diet, which helped my swelling a great deal. To help with the emotional aspects, I’ve found a great group of people on Instagram and highly recommend reaching out to others on that social media platform. I’ve learned many tips and tricks and am grateful to find other lymphedema “thrivers” who can share in the ups and downs of a lymphie life. I’ve always loved plants and been drawn to them! I grew up foraging for berries, apples, etc. in our woods on our acreage in Ontario, and then worked at greenhouses, farms, and parks as a young adult. This plant passion started to take root in my late 20s when I

began making my own plant-based skincare products that would help me manage my lymphedema better. I was unhappy with the green choices that were out there, and 15 years ago, there weren’t many to be found. At the time, I was still working as a Health Librarian and this was my creative outlet. After many years of creating and selling my products at craft shows, I took a great big leap and decided to turn my hobby into my passion. I founded a company called PLANTiful—detoxifying skincare. I took courses and channeled my strong health information research skills into my business to create herbal-infused, science-based products that didn’t just smell great, but worked! Having my own business has been wonderful but also can be stressful and sometimes creates long hours, which can negatively affect my lymphedema. Overall, it has been helpful for my condition in that I can set my own hours, build in swims, rebounding or elevation breaks when it suits me. It has also allowed me to take care of my two girls and watch them grow up, which has been a gift in itself. They also get to learn a lot about plants now too, helping me forage for flowers and herbs around the neighbourhood and in our garden. Today, I’m motivated to thrive with my

Amy Beaith, lives with primary bilateral lymphedema in both legs in Edmonton, Alberta. She is the founder of PLANTiful apothecary—a plant-loving, detoxifying skincare company. To learn more about PLANTiful go to www.plantiful.ca, find me on Instagram: @livPLANTiful and sharing my lymphedema story @nourishedlymph

Spring 2018

lymphedema by my business I’ve created and my children. I want to show them that you can live well with this condition and go after something you are passionate about. Finding a passion helped me accept my lymphedema better and use it as a driver for my passion. Find something that motivates you, brings you joy everyday. It might take time and it might not be obvious, but keep looking. Don’t give up!! Skincare tips When you have lymphedema, your immune system and detoxifying system is much slower and doesn’t function as well as others, which is why we are prone to infections, etc. The important thing to think about when it comes to skincare is that our skin is our biggest organ and it only takes 30 seconds for something that you put on your skin to reach your bloodstream. Amazing right? Whatever you choose to put on your skin should be as toxin-free as possible to reduce the stress on your lymphatic system! My suggestions for the top 5 categories where you should choose a product that is all natural (either because they cover a large surface area on your body or their use is in close proximity to lymph node areas) are: toothpaste, deodorant, moisturizers, soap and zinc-oxide sunscreen. If you aren’t sure which products might be toxin-free or a good choice to switch to, there are some great resources out there such as the Canadian ‘Think Dirty’ organization and the Environmental Working Group Skin Deep Database in the USA. Both these resources cover the larger skincare brands in Canada and the US and are helpful tools to have with you when shopping or browsing through your bathroom. LP 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 Compression fitting Try to be at your “best measurement” before you get fitted for a new garment. This might mean having the garment fitter measure your limb in the morning instead of late afternoon, when you may be more swollen. Depending on your situation, it might also mean that you should use night compression bandaging or devices, or even 24-hour self-bandaging, for a few days before being measured. Get advice from your lymphedema therapist. Being measured when you are at “your best” will help maintain your limb volume. You may want to collect a small “wardrobe” of self-management tools and solutions. Anna Towers, Montreal, Quebec

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

Beachwear With proper precaution, those living with leg lymphedema can still enjoy relaxing walks on the beach. Wear a compression garment, covered by a long cover-up or wide and lightweight palazzo pants to shield the sun, and appropriate footwear to protect your feet from sharp shells, insect bites and other potential hazards that could result in breaks to the skin.

Carry-on Keep the compression garments you plan to take with you on a trip, close to you (in your purse or carry-on). That way it will be easier to find these items if needed, for example, to provide additional reduction in swelling or if needed as a replacement due to the slight soiling of one garment.

Anna Kennedy, Toronto, Ontario

Jan Hasak, Chico, California

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 and photos to pathways@canadalymph.ca.

Spring 2018

Research and Community

Did you know? Lymphedema after cancer

A special issue of Rehabilitation Oncology, official journal of the American Physical Therapy Association highlights progress in rehabilitation and physical therapy management of cancer-related lymphedema--including a new study identifying characteristics of patients who need extra support in practicing essential self-care. Other articles point toward ongoing advances in lymphedema care, including new imaging techniques, and technologies to help patients monitor and control their condition, according to an introduction by Guest Editor Nicole L. Stout, DPT, CLT-LANA, FAPTA. You can read Nicole’s article in https://journals.lww.com/ rehabonc

Effects of Kinesio Taping

The Kinesio Taping (KT) has become an alternative treatment for lymphedema volume reduction. A study evaluated the literature through a systematic review on KT effects on lymphedema related to breast cancer. Databases were accessed through: SCIELO, LILACS, MEDLINE via PubMed, and PEDro, between 2009 and 2016. Studies published in English, Portuguese, and Spanish were considered for inclusion. The studies’ methodological

quality was assessed by the PEDro scale. Seven studies were identified by the search strategy and eligibility. All of them showed positive effect in reducing lymphedema (perimeter or volume) in measures taken before and after treatment. However, with no effects comparing the KT versus a control group or other treatments (standardized mean difference = 0.04, confidence interval 95%: -0.24; 0.33), the average score on the PEDro scale was 4.71 points. Conclusions: KT was effective on postmastectomy lymphedema related to breast cancer; however, it is not more efficient than other treatments. Source: PMID: 29308967 DOI: 10.1080/09593985.2017.1419522

Stress and lymphedema

A clinical trial studied the effect of relaxation techniques on the level of edema, anxiety and depression in post-mastectomy lymphedema patients undergoing comprehensive decongestive therapy. Researchers compared two treatment methods provided to 31 women with postmastectomy lymphedema; 15 women received CDT

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and 16 received RCDT (Relaxation plus CDT). The edema volume, anxiety and depression scores were compared at the first and last sessions of the first phase of the treatment and six weeks afterwards. There were significant differences between the two groups in terms of the reduction in depression (p = 0.024) and anxiety (p = 0.011) scores throughout the study. CONCLUSION: Relaxation techniques reduced the anxiety and depression scores and the volume of edema in the patients with lymphedema. The addition of this intervention to the therapeutic package for lymphedema patients requires further studies. Source: PMID: 29304095 DOI:10.1371/journal.pone.0190231

Managing lymphedema around the world

The work of the International Lymphoedema Framework (ILF) is highlighted in the recent issue of Pan European Networks. Written by Pathways Editor, Anna Kennedy, the article outlines the key projects and areas of focus that the ILF and its 12 national frameworks around the world are currently involved in. LP

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Canadian and International Events April 27-29, 2018 Next Steps in the Treatment of Lipedema & Dallas, Texas Dercum’s Disease at the DoubleTree Dallas Campbell Centre in Dallas, Texas. Keynote speaker is world renowned Fat Disorder expert, Karen L. Herbst, MD, PhD. Topics to include surgical and non-surgical treatment options in managing both lipedema and Dercum’s Disease. n www.fatdisorders.org May 17-19, 2018 The 12th Australasian Lymphology Association Conference Brisbane, Australia will be held in Brisbane. The conference theme is ‘Stronger Together’, reflecting the bringing together of health professionals from different disciplines with the common aim of improving outcomes for people with lymphatic dysfunction. n www.ala-conference.com June 6-9, 2018 International Lymphoedema Conference. The ILF 2018 Rotterdam, conference takes place in the Netherlands and will be co-hosted Netherlands by the Dutch Lymphoedema Framework. The venue is the legendary former steamship SS Rotterdam. All sessions, guest accommodation and entertainment will take place on the ship. The hosts look forward to welcoming you onboard. n www.2018ilfconference.org September 44th European Congress of Lymphology and Lympho 2018; 21-22, 2018 hosted by the European Society of Lymphology, provides a Prague, unique opportunity to members of the medical community Czech Republic to gain up-to-date information concerning diagnostics, screening, and conservative as well as surgical treatment of lymphatic insufficiency/lymphoedema. n www.eurolymphology.org

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Our readers

Comments from our

recent survey:

What an excellent resource. Very practical and easy to read with good information. Thank you! I always find the patient stories the most interesting but the doctors’ articles the most informative. The reviews and synopsis of recent research and future treatment options are especially interesting.

“

Education Education

I enjoy the topics and articles on exercise and diet related to lymphedema.

Pathways is an invaluable magazine for patients and therapists. Most important information for me is the research and development to improve my condition.

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

The CLF distributes Pathways including customized inserts through its provincial partners. The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality. Platinum Sponsorship

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 Nova Scotia 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

Spring 2018

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