Canada’s Lymphedema Magazine Pathways · 2015-12-21 · “I wear a Juzo arm sleeve and gauntlet all day every day. I now do a variety of exercises including a lot of walking”

WHAT’S INSIDE...

Mindfulnessbased therapy

Research perspectives I Psychosocial considerations I Affiliate profile I Hints and tips

PathwaysCanada’s Lymphedema Magazine

Conference highlightsSurgery for lymphedema

WINTER 2016

Empowering patients and professionals

B622_CLF_Pathways_Wtr2016.indd 1 12/8/15 9:26 AM

New Canada office open, improving our service to Canada.

Juzo Canada, Ltd.1100 Burloak Dr. Ste 300, Burlington ON L7L 6B2www.juzo.ca • [email protected] • 800-222-4999

Get more with Juzo Lymphedema products, sizes, options, colors and fabrics in ready to wear or custom garments.

“I wear a Juzo arm sleeveand gauntlet all day every day.I now do a variety of exercises

including a lot of walking”

BeckyExercise Enthusiast

Lymphedema from Breast Cancer

Keep Patients Moving with

More Options, More Choices,More Compliance.

Fashion DesignedArm Sleeves

NEW

Cheryl Lee

Mother of TwoStage II Secondary Lymphedema

“My compression garments help me remain active with working out and being amother to an 11yr old & 3 1/2 yr old girls.”

“I was fitted for my garments and haven’t looked back. I wear

them everyday to basketball, softball, school and just hanging

out with my friends.”

TeressaHigh School Student

Primary Lymphedema

C

M

Y

CM

MY

CY

CMY

K

JUZO_CanadianLymphedema9x11Ad_16.pdf 1 11/20/15 8:32 AM


Winter 2016

The 2015 calendar year was a busy time for the Canadian Lymphedema

Framework, with many new projects and initiatives. The focus was on our education strategy with the launch of a new website, a national conference and a series of tools to help increase awareness and help patients self-manage their lymphedema. Our print materials are now being distributed across Canada in collaboration with the provincial lymphedema associations. With all of that work behind us—we look forward to exciting new projects and initiatives in 2016.

One of those projects will be new developments with Pathways. We will be applying for grants and additional sponsorships to ensure long-term sustainability for this publication and to expand distribution to more lymphedema and oncology clinics across Canada. Our online edition will be launched this Spring to make it easier for subscribers to read the magazine on their iPad or mobile device. This particular issue again has 32 pages in order to fit in all the sponsors, advertisers and the roster of articles appealing to both health professionals and patients. Our national lymphedema conference was a great success with over 290 delegates, 25 speakers and 20 poster presentations. We received excellent feedback from our delegates, speakers and exhibitors. Here is what one delegate had say:

“This conference gave me more confidence to discuss treatment goals with my clients and communicate with them about their individual needs and challenges”. This conference would not have been possible without the generous support of our sponsors. The Canadian Breast Cancer Foundation, our lead sponsor has been a steady supporter of our lymphedema education and awareness efforts for many years. We thank them as well as our other sponsors (listed on page 10) for the funding that enabled us to present a comprehensive agenda and lineup of international and Canadian speakers. One speaker that everyone was buzzing about was Catharine Bowman, a 17 year- old high school student, researcher and lymphedema advocate, who is intent on finding a potential pharmacological treatment. Her luncheon talk was an inspiration to all. We will be publishing an interview with Catharine in our Spring 2016 issue. Please visit our website for the conference abstract submissions, program details and some of the presentations and handouts. We hope that the conference review and highlights will incentivize you to join us at the next national event in 2017. We feature articles from two of our conference keynote speakers—Dr. Pierre von der Weid and Dr. Jay Granzow. Dr. Pierre von der Weid provides us with a glimpse of the work in his laboratory, working to improve our understanding of the relationship between the lymphatic system and inflammation. Dr. Granzow provides an overview of the types of surgery being performed in some centres. Although this treatment option is emerging slowly as an option for specific patients, it is important to note that these surgeries are still

considered experimental in Canada and there are no centres routinely offering this surgery for all patients. Patient selection is key and surgery does not necessarily omit the need for wearing compression for the rest of your life. Two articles in this issue address the psychosocial issues of lymphedema. Researchers Ryan Hamilton, Roanne Thomas and Yvonne Anisimowicz help us understand the nature of loss relating to living with lymphedema and how action-oriented hopes can impact coping. Another coping mechanism for chronic conditions is mindfulness, which was presented at the conference by Dr. Michael Speca. This issue features an article by Dr. Linda Carlson, who shares some practical tips on mindfulness-based cancer recovery that are applicable to anyone living with lymphedema. Whether you are someone living with lymphedema or a health professional treating patients, we believe this issue has valuable information that will be of interest. On behalf of the CLF Executive and the Pathways Editorial Board, we wish you a happy and healthy 2016. LP

Hopping from one busy year to the next

Editor’s Message

Our print materials are now being distributed

across Canada in collaboration with the

provincial lymphedema associations.

Anna Kennedy

New Canada office open, improving our service to Canada.

Juzo Canada, Ltd.1100 Burloak Dr. Ste 300, Burlington ON L7L 6B2www.juzo.ca • [email protected] • 800-222-4999

Get more with Juzo Lymphedema products, sizes, options, colors and fabrics in ready to wear or custom garments.

“I wear a Juzo arm sleeveand gauntlet all day every day.I now do a variety of exercises

including a lot of walking”

BeckyExercise Enthusiast

Lymphedema from Breast Cancer

Keep Patients Moving with

More Options, More Choices,More Compliance.

Fashion DesignedArm Sleeves

NEW

Cheryl Lee

Mother of TwoStage II Secondary Lymphedema

“My compression garments help me remain active with working out and being amother to an 11yr old & 3 1/2 yr old girls.”

“I was fitted for my garments and haven’t looked back. I wear

them everyday to basketball, softball, school and just hanging

out with my friends.”

TeressaHigh School Student

Primary Lymphedema

C

M

Y

CM

MY

CY

CMY

K

JUZO_CanadianLymphedema9x11Ad_16.pdf 1 11/20/15 8:32 AM


4 Ly m p h e d e m a p a t h w a y s . c a Winter 2016

Contents

Winter 2016 n Volume 5 Issue 1

PublisherPathways is published four times

per year by BCS Communications Ltd. on behalf of the Canadian

Lymphedema Framework (CLF) and its provincial affiliates.

Editorial BoardPamela Hodgson, PT David Keast MD FCFPRoanne Thomas PhD

Anna Towers MD FCFPLucette Wesley CIM

Janice Yurick PT

Editor Anna Kennedy

Editorial Intern Nicole Boulet

Advertising and SubmissionsWe 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 toCanadian Lymphedema Framework4800 Dundas Street West, Suite 204

Toronto, Ontario M9A 1B1Telephone: 647-693-1083

Email: [email protected]

Stock photos in this issue: CanStockPhoto

Other photos are courtesy of N.Boulet, D.Martin

Canadian Publications Mail Agreement40065546

ISSN 1929-1418

Printed in Canada

Finding mindfulness through meditationCoping with challenges of lymphedema using mindfulness-based approachesPaying attention to the present moment.

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Conference reviewA national gathering of health professionals, educators, researchers and patientsThemes were education, research and partnerships.

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Studying inflammation- induced lymphatic dysfunction to better understand lymphedema

How inflammation contributes to depravation of lymphatic pumpingThe importance of the lymphatic system in inflammatory diseases.

.............................................

Surgery for lymphedema treatmentModern procedures have found greater precision in treating lymphedemaCareful patient selection after conservative lymphedema treatment is critical.

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Psychosocial considerations of lymphedemaUnderstanding loss and hope

5

14

25

18

9

Considering attending the International Lymphoedema Conference in Australia May 2016? Be sure to sign up at www.lympho.org as an affiliate member in order to register at a reduced rate.

H.O.P.E.


As women living with lymphedema we all know, it’s not always acute cancer

treatments that are most difficult, but rather coping with the lingering symptoms and side effects of treatment including chronic or intermittent lymphedema. Lymphedema can be one of those long-term or late effects that emerge or worsen well after treatment completion, and may persist for years. The swelling, discomfort and pain that often accompany lymphedema can compromise quality of life, and the ability to complete day-to-day tasks. Sleeping may be difficult and as a result feelings of fatigue and lack of energy during the day can make getting things done a constant challenge.

Mindfulness for lymphedemaTreatments for lymphedema that can be helpful are compression bandages and lymphatic massage, but these treatments only go so far for helping with the psychological burden of having to live with this condition, perhaps indefinitely. One type of coping strategy that has proven helpful for people with cancer in general, and for treating symptoms including pain, fatigue and sleep problems, is training in mindfulness. Mindfulness is often defined as paying attention to the present moment with an attitude of acceptance and

nonjudgement. It is both a practice that you set aside time to do (mindfulness meditation) and also a way of being in the world (being mindful). The practice of mindfulness meditation trains you in how to think differently, which eventually translates into being more mindful in everyday life.

Attention is the quality of awareness that you are honing through practice; this is the ability to keep your focus of awareness where you want it to be. Typically for beginners this focus is on the flow of your breath. Attitude is the way in which you pay attention; it needs to be kind, open, curious, accepting, nonstriving and nonjudgmental. A harsh or punishing attitude is unhelpful and in fact counterproductive in developing qualities of

mindfulness. One of the best ways to learn how to be more mindful is through taking a training program. The most well known of these is called Mindfulness-Based Stress Reduction (MBSR). It was developed in the late 1970s by Jon Kabat-Zinn at the University of Massachusetts Medical Centre.

It incorporates stress reduction principles with daily training in mindfulness meditation and gentle yoga practices over the course of 8 weekly meetings. He’s written a wonderful book describing the program called Full Catastrophe Living 3. Over the years, it has become very popular and been tested in various groups of people suffering from pain, anxiety, depression and a very wide range of medical conditions.

Mindfulness-based cancer recoveryIn Calgary in the late 1990s we developed an adaption of this program, which is called Mindfulness-Based Cancer Recovery (MBCR). We have tested MBCR in studies of people

Finding mindfulness through meditationCoping with challenges of lymphedema using mindfulness-based approachesBy Linda E. Carlson

Clinical Perspective

Linda Carlson, PhD is a Registered Clinical Psychologist and Professor in Psychosocial Oncology at the University of Calgary Cumming School of Medicine. She has taught mindfulness courses at the Tom Baker Cancer Centre since 1998. She also conducts research on the program and has published over 130 scientific papers in the area of Psychosocial Oncology.

Winter 2016 Ly m p h e d e m a p a t h w a y s . c a 5

What is mindfulness?There are three main components to mindfulness practice: Intention, Attention and Attitude. Your intention when you take up mindfulness practice can vary, but for most beginners the intention is just to learn to be present, rather than allowing the mind to dwell in regrets of the past or worries of the future.



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with all types of cancers, and specifically in women with breast cancer, and shown benefits across symptoms of anxiety, stress, depression, anger, confusion, fatigue and sleep1. People in the group also report feeling more hopeful, having a greater sense of meaning and purpose in their lives and feeling more connected with others. We have also taken samples of saliva and blood and shown changes in immune function, inflammation and stress hormones, all in the direction of healthier

profiles. Women with slightly elevated blood pressure also showed significant reductions over the course of the MBCR program. While we have not directly measured lymphedema symptoms, people in these programs often report better pain control and an ability to be less bothered by symptoms.

So how can you get started? There are many books on the topic of mindfulness, and we’ve written one specifically about our

program, called Mindfulness-Based Cancer Recovery: A Step-by-Step MBSR Approach to Help You Cope with Treatment and Reclaim Your Life 2. It is available at most

book stores and takes your through our in-person program week by week. Many cities and cancer centres across Canada also have local programs you can sign up for.

Meditation instructionsIf you’d like to try the basics of mindfulness practice right now, simple instructions for sitting meditation are provided (see sidebar on page 8). At the very least, learning to let go of

thinking “what if” about the past, and having regrets or blaming

yourself or others for the way things have turned out can be liberating. You can’t change the past so dwelling on it causes unnecessary

suffering. Then many people worry about all the unknowns

and uncertainty about the future. What if this or that happens? How

will I cope? No one can predict the future. All you can do is live your life each moment with intention. The only time we have choice is in each individual moment—so practicing mindfulness gives you full access to your ability to make wise choices, learning from the past and not worrying about the future.

continued on page 8

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Leading the way to healthier, independent lifestyles.

www.shoppershomehealthcare.ca

LYMPHEDEMAYour Best Choice for Lymphedema CareAt Shoppers Home Health Care®, our caring,

professional staff are available to assist you with

all of your compression therapy needs. We have

experienced, certified fitters on staff at select

locations to measure and fit custom-made or

pre-sized supports. A full range of Sequential

Pumps and Pneumatic Sleeves are also available.

Please feel free to stop by one of our locations for

more information on how Shoppers Home Health

Care can provide you with the best in compression

therapy care.

RED DEER5250 22nd Street, Unit 70C(403) 342-4460

CALGARY/SOUTH180-94 Avenue South East Unit 25A(403) 255-2288

TORONTOLawrence Plaza528 Lawrence Avenue West (416) 789-3368

SCARBOROUGH685 McCowan Road(416) 431-4621

MISSISSAUGAApplewood Village1077 North Service Road(905) 281-0166

ST. CATHARINESLake Carlton Plaza145 Carlton Street(905) 641-5200



Whether your challenges now are coping with lymphedema, other symptoms, worry about cancer recurrence or just trying to get through the day-to-day grind of family and work, cultivating a mindfulness practice can be a precious and long-lasting gift to yourself, one that everyone deserves and can cultivate. LP

References 1. Carlson, L.E. (2013). FEATURE: Mindfulness-

based cancer recovery, The development of an evidence-based psychosocial oncol-ogy intervention. Oncology Exchange, May 2013. 12(2): 21-25.

2. Carlson, L.E. & Speca, M. (2010) Mindfulness-based cancer recovery: A step-by-step MBSR approach to help you cope with treatment and reclaim your life. New Harbinger, Oakland, CA.

3. Kabat-Zinn, Jon (1990). Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness. New York: Bantam Doubleday Dell Publishing Group, Inc.

Sitting MeditationFind a comfortable sitting position where the spine is upright, head gently balanced and shoulders drawn back and down. If seated in a chair, move for-ward to the edge and place your feet flat on the floor. If seated on a cushion, make sure your hips are elevated so your legs are resting, or supported with cushions to avoid strain. Rest your hands on the knees or in your lap. Settle into a position in which you can remain comfortable and still. Now allow focus to come to the in and out flow of breath. The mind relaxed, spacious; you don’t have to create anything. Simply feel the gentle rising of the belly, the abdomen, with each in breath, and the falling with each outbreath. Allow the breath to be natural, noting its in and out flow, not trying to force or control the breath in any way. Noting each in and out, each rising and falling, allowing a settling into the even rhythm of the breath. Allow your mind to rest in that place feeling the movement of the breath. As you feel the breath, you can make a silent mental note to sharpen concentration: noting “in” as you feel the breath go in: “out” as you feel it leave. Very gently in your mind, just support the awareness of the actual sensations…just note in and out, rising and falling. Your mind inevitably will wander from the breath. Noting this is a success. When you become aware of the wandering mind, very gently and kindly lead it back to the breath. You will have to do this time and again at first. Do so with kindness and compassion for yourself. After many weeks and months of practice your mind will become trained to wander less from the present moment. Continue for just a short period at first, gradually extending up to 20 minutes each day.



The 2015 National Lymphedema Conference welcomed 290 doctors, researchers,

therapists, exhibitors, patients and advocates to the Coast Plaza Hotel and Conference Centre in Calgary, Alberta, October 23–24, 2015. The event was co-hosted by the Canadian Lymphedema Framework (CLF) and the Alberta Lymphedema Association

(ALA) in collaboration with the University of Calgary. Participant evaluation

results showed that 85 per cent of the respondents rated the conference either excellent or very good and 96 per cent thought the conference was a worthwhile investment of

their time and money. This year’s conference

continued the CLF’s themes of education, research and partnerships and

featured a variety of plenary sessions that welcomed guest speakers from the UK, USA, Israel and Canada. Concurrent sessions were geared to various streams of learning from the newly diagnosed patient to the seasoned therapist, as well as having a physician’s only workshop. In the exhibit hall there were 24 booths; featuring regional clinics that provide CDT as well as vendors of lymphedema specific aids. These companies continue to support the ongoing development of products for the lymphedema community and it was great to see the variety of products available.

FRIDAY – DAY ONE

The opening plenary focused on looking at lymphedema from an international perspective. In the first two days post-earthquake (January 12, 2010), Dr. John Macdonald established the wound care program in the University of Miami, Project Medishare, Haitian Relief Tent Hospital in Port-au-Prince. He is, at this time, the Medical Director of the Wound and Lymphedema Program now located at the hospital Bernard Mevs in Port-au-Prince, Haiti. Dr. Macdonald spoke passionately of his work in Haiti. In Canada, lymphedema is most often recognized and diagnosed after cancer treatment or as a primary condition. However, the greatest cause of lymphedema worldwide is a mosquito carrier, causing lymphatic filariasis. Seven countries in the western hemisphere have the parasite, Haiti being one. Haiti has a population of 10.5 million people and fewer than 2,000 hospital beds. There is a 99 per cent risk of exposure to these mosquitos with 10 per cent of the population being infected. Filariasis causes damage to the lymphatic vessels and results in severe lymphedema, disfigurement, pain, severe disability and social stigma. Project Medishare is working on distributing medication to kill the filarial

worm and is advocating novel approaches such as the use of DEC fortified salt to limit infections and reduce the incidence of lymphedema. Working in countries like Haiti, Dr. MacDonald’s organization is constantly challenged with the need for supplies, equipment and getting compression for these patients. While there is no cure, the condition can be managed with proper resources. His last sobering thought was that even if they eradicate the disease by distributing medication, the current patients will still be around for many years and will need lymphedema therapists. Dr. Christine Moffatt, Professor of Clinical Nursing Research at the University of Nottingham School of Nursing, questioned how big the problem of lymphedema is. While lymphatic filariasis is the challenge in some places, cancer related lymphedemas are more prevalent in others, and venous disorders present the condition as well. Different clinicians, organizations or countries may define lymphedema differently and use various methodologies for diagnosis, making it difficult to gather and compare information. She spoke of the need for common definitions, methods of measuring, and classifications. Dr. Moffatt called lymphedema the silent epidemic. Working in the UK, 70 per cent of the patients that she sees have never been diagnosed with lymphedema. Chronic edema

Conference Review

The 2015 National Conference highlights Inspiring lives through education, research and partnerships

Thank you to Sandra Macdonald, Casi Shay and Wendy Leroux, certified lymphedema therapists and members of the Canadian Lymphedema

Framework Education Working Group, for their contributions and collaboration on this conference review.



cases are on the rise with demographic changes of an increased elderly population; increased obesity rates and related mobility challenges; and more patients surviving cancer. Hence the LIMPRINT project—to develop a method to describe and validate lymphedema internationally, to merge data so there are definable numbers that will be taken seriously thus changing the myth of lymphedema being rare and creating a drive for better understanding. The Research Snapshots session covered a number of topics; one being that patients with a history of cellulitis were identified as being at a heightened risk for lymphedema and patients with lymphedema being at greater risk for cellulitis. There was discussion on the use of subcutaneous needle drainage to decrease lymphedema. This could be used in cases of

advanced disease or palliative care where significant edemas may arise and where symptom control and improving quality of life measures are a priority. In a presentation that highlighted impaired antigen delivery during edema, it was stated

that the presence of inflammation can suppress lymph vessel

contraction. At the same time chronic edemas lead to inflammation, affecting antigen delivery and efficiency of the

immune system. Meanwhile, at the pool, Dorit Tidhar, a physiotherapist from Israel conducted an

Aqua Lymphatic Therapy demonstration for health professionals that demonstrated the effects of water pressure with movement and exercise together to decrease limb volumes. The ALA Advocacy to Alberta Health Services (AHS) Action session reviewed the history of lymphedema services in Alberta. The

meeting was hosted by Diane Martin of the Alberta Lymphedema Association, Dr. Margie McNeely of the Faculty of Rehabilitation, Heather Watt, an occupational therapist at Community Rehabilitation Interdisciplinary Service (CRIS) and Lisa Warner at Alberta Health Services. The first AHS lymphedema clinic was established in Edmonton, followed by another in southern Alberta. However, these clinics only served patients with cancer related lymphedema. It was the goal of the ALA to have all lymphedema patients treated and their health services paid. Eventually, CRIS in Edmonton and the Calgary Ambulatory Lymphedema Service for non-cancer related lymphedema was established. This session described how the stakeholders advocated for the funding and worked together the make the implementation of lymphedema services in Alberta a reality. Later in the day, Dr. Moffatt’s workshop was an open discussion session whereby she presented some of her cases and asked how we might proceed with a treatment.

Dorit Tidhar and Dr. Christine Moffatt.

FALL 2015 AD IN PLACE

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



She emphasized that we should not rush into treatment with CDT as there may be other medical reasons for edema that require caution or medical management. This was a very useful session as most therapists are not doctors. Dr. Moffatt provided the participants with possible medical tests that could be requested from the patient’s physician to rule out other causes of chronic edema. Friday evening allowed an opportunity to socialize, network with other professionals and look at the 20 poster presentations that showcased the work of therapists across the country. Many addressed individual cases that describe the challenges of managing patients with complicated lymphedema. One poster assessed the success of an eight-week training of self-care skills based on CDT to patients at Princess Margaret’s Hospital in Toronto, Ontario. Others described treating lymphedema in hospital settings in Windsor, Ontario and Montreal, Quebec. There was also a poster that described using elastic taping or kinesiotape as a tool to aid in lymphedema care, and another that discussed the potential of flavonoids as a novel treatment. The University of Calgary presented some detailed lymph physiology in their presentation; looking at inhibition of lymph pumping mechanisms and of looking lymphatic changes with inflammatory processes in the gastrointestinal tract and Crohn’s Disease. Dr. Anna Towers and Dr. David Keast also led a Physicians Only workshop for

local doctors wanting to learn about the basic pathophysiology of lymphedema, the importance of early diagnosis and current treatments as per international guidelines.

SATURDAY – DAY TWO

The second day of the conference opened with Dr. Pierre-Yves von der Weid PhD, Associate Professor at the Department of of Physiology and Pharmacology, University of Calgary presenting an interesting review of the lymphatic system. He emphasized its role in the transport of fat and fluid and the modulation of the immune system. He also stressed the role of obesity and antigen exposure in inflammation and the decrease in the efficacy of the lymphatic pump. His research group is presently studying lymphatic

dysfunction and the measuring of the effects of some chemical agents

in altering the action of the lymphatic pump. Some of the long-term goals of the research are to translate research findings into clinical practice,

and to find improved imaging techniques for better diagnostics to ultimately improve treatment for

lymphedema. Dr. von der Weid has helped found the Alberta Lymphedema Network, ALNET that brings together scientists and clinicians interested to promote lymphatic and lymphedema research in Alberta. As noted earlier, it has been established that having standardized measurement tools may help improve the collection of lymphedema data. Dr. Margie McNeely guided participants in hands-on experience

using bioimpedence and perometry. Both measurement technologies are time saving in clinical practice and reproducible measurements for consistency. Both can also detect early changes in limbs at risk for lymphedema. Bioimpedence measures changes in the extracellular fluid in the patients’ lymphedemous limb. While it has shown reliable results in early detection of breast cancer related lymphedema it is not as reliable in advanced, fibrotic lymphedema. Bioimpedence is a class two medical device and, in Canada, is only being used in research for lymphedema measurement. Perometry on the other hand measures limb volumes using an infrared optical electronic scanner. It allows the therapist to select certain zones of measurement within the limb as well as the full limb volume. This is useful to detect early lymphedema or to monitor certain areas of the affected limb. Perometers are classified as a class one medical device and are approved for clinical use in Canada. While the use of perometry or bioimpedence is still not feasible for many clinics, it would be a helpful addition to ensure consistent measurement in lymphedema care.

“What an amazing conference. Thank you for the opportunity to network and learn so much new information”. It was an inspiration to better manage my lymphedema”.

Dr. Anna Towers.

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Dr. John Macdonald’s second day pre-sentation focused on the relationship between wounds and lymphedema. Dr. Macdonald is a great advocate for short stretch compression and the recognition of simple wound care management practices. His experiences in Haiti and in Ghana have shown that these can make a difference. He expressed that the edema around wounds is often lymphedema which when untreated slows wound healing. Short stretch bandages use a low resting pres-sure vs. a higher working pressure and assist the muscle pump. He advocates that the prin-ciples of; cleaning a wound, protecting it from trauma, promoting a clean base, maintaining a moist environment and containing peri-wound edema using compression, are key to healing wounds more quickly. Dr. Macdonald empha-sized the vital role of lymphedema therapists and how our application of compression ther-apy is of utmost importance in his perspective in treating patients with wounds, lymphedema, cellulitis and diabetes. “Little compression is better than no compression.”

In her session, Exercise: debunking the myths, Dr. Kristin Campbell, Associate Professor at the Department of Physical Therapy at UBC reviewed the many studies that look at how exercise programs affect the incidence of lymphedema. She discussed numerous studies and concluded that individuals with secondary lymphedema can safely participate in progressive regular exercise. Another measurable result of exercise and strengthening were quality of life measures which increased after exercise programs. It is important to progress slowly and be monitored for symptoms. She also noted that few studies have been done for lower extremity lymphedema. Self-Managing Lymphedema – Take control was one of the most popular sessions where patients learned practical tips from therapists Lori Radke and Elizabeth Girling as well as each other for daily living with lymphedema.

There were several practical exercise sessions available for patients as well —one by physiotherapist Marie Jutras (Montreal, Quebec) that promoted the benefits that even just a 15 minute specialized session could have on lymphatic flow and Barbara

Cunnings-Versaevel led a group through Healthy Steps – the

Lebed Method. Dorit Tidhar (from Israel) customized both a leg and arm session for patients with lymphedema in the hotel pool.

Dr. Speca led participants through a meditation exercise to demonstrate how mindfulness could be

an effective tool for lymphedema patients. His research showed how mindfulness, a meditation technique, can help us focus on positive thoughts instead of negative ones and their effect on healing the mind and body. Mindfulness was found to have positive outcomes for lymphedema patients not only

Dr. Michael Speca and conference co-host, Diane Martin.



in pain reduction but also providing them with a positive coping mechanism that helps them reclaim their life. When stress is always present in our life it causes an imbalance and prevents us from healing. Mindfulness takes us out of that negative coping cycle and provides us with a positive coping mechanism. Dr. Jay Granzow, a Plastic Surgeon from Los Angeles, CA, discussed surgical options of suction assisted protein lipectomy (SAPL) and Vascularized Lymph Node Transplant (VLNT). He showed some wonderful videos on these procedures and how they select lymph nodes to transfer. He emphasized that with surgery it is important to get the limb volume down first and that he always works with a lymphedema therapist. SAPL is very specific procedure, and requires bandaging not only right after surgery but ongoing. On lymphoscintigraphy after surgery, there was no change from pre-surgery in lymph function, already damaged lymphatics are not further damaged. VLNT releases and removes scar tissue, replaces it with healthy tissue from elsewhere, improves

mobility and reduces the incidence of infection. There may be a risk of lymphedema at the donor site but he does reverse lymph mapping to minimize this risk. He suggests that safe and effective surgical procedures exist but it is not a magic bullet. The conference wrapped with all the experts who presented during the conference sitting together on a Q&A panel, addressing questions from the audience. Many great questions arose, inspiring more questions. Sharing is so important to the progress of lymphedema care and recognition. One of the very important items that takes place during a National Conference are the stakeholders meetings, committee meetings and meetings of the Provincial Association representatives. These help the organization set priorities for the future and move initiatives forward. We want to acknowledge all the work that is done by the many volunteers in the background before and during the conference. It all came together for a wonderful event. Until next time. LP

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CONGRATULATIONS To the Poster Presentation Winners

1st Prize: Marie-Eve Letellier et al —Treating Breast Cancer related lymphedema in a hospital setting.

2nd Prize: Rita Wannechko- Koenig- Lymphedema management strategies for Head and Neck Cancer patients: A case series using photo-graphic surveillance.

Honourable Mention: Tracy Smith – The Incredible Shrinking Women.

Peoples Choice Award: Katherine Styrchak and Jen Dalke - Clinical Case Study: Breast cancer- related lymphedema in a male patient ends in disarticulation.



Research Advances

The lymphatic system, with its dense net-work of lymphatic vessels and numerous

lymph nodes, is an important player in the maintenance of critical bodily functions. It maintains the fluid content in our tissues and organs to a sustainable level and provides the supporting structure for our immune system to protect the body. In fact, it is through lymphatic vessels that fluid, known as lymph, is drained from tissues back to our blood stream and it is through the same vessels that foreign substances are transported to the lymph nodes, where they are detect-ed and acted upon. It is intriguing to note that through these two functions, the lymphatic system is inti-mately associated with inflam-mation, the reaction of our body to infections or wounds characterized by swelling, fiver, redness and pain. Over the last 15 years, our laboratory has been investigating the basis of the mecha-nisms driving lymphatic contractile function and lymph drainage and working to improve our understanding of the relationship between the lymphatic system and inflammation, as well as the importance of the lymphatic system in inflammatory diseases.

How is lymph transported through the body?Fluid that naturally accumulates in every tissue and organ is normally collected by initial lymphatic vessels. Through these finger- like structures, lymph then flows towards collecting lymphatic vessels, which are much larger. These collectors as we call them have muscle cells in their wall, which confer them a structure very similar, but more delicate,

to veins. Like veins, they also possess regularly spaced valves. But unlike

the veins, lymphatic collectors have the unique ability to contract and relax in a rhythmical fashion

to allow the lymph to be actively propelled away in

the direction of the valves. This contraction-relaxation

cycle we call lymphatic pumping , occurs at frequencies defined by a combination of physical and chemical factors. The major regulator of lymphatic pumping is the volume of lymph to be drained; the more lymph, the faster the pumping. Many chemical mediators have also been shown to modulate this activity. Lymphatic pumping is the main—and in some parts of the body— the only means to move lymph. However, while some molecular elements and mechanisms have

been teased out, we still have a very limited understanding of what drives this activity. Our studies revealed the importance of molecules released by neighbouring cells in modulated pumping. We determined their mechanisms of action and implicated the molecules, such as ion channels, that were expressed at the surface of the lymphatic muscle cells in the pumping initiation.

What goes wrong in lymphedema?Lymphedema is a chronic tissue swelling, which occurs when the ability of the lymphatic vessels to drain lymph is exceeded. Lymphedema can be inherited and more commonly occurs as a complication of lymph node resection and radiation for cancer treatment, affecting more than 5 million people in North America. People afflicted by lymphedema suffer from pain, reduced quality of life, and severe soft tissue infections requiring significant medical care. Although lymphedema has multiple potential causes, an impairment of lymph drainage is always the precipitating factor. The ensuing lymph stasis and tissue swelling is typically accompanied by inflammation, tissue fibrosis and accumulation of fat which develops over time. Intriguingly, these features are also observed in chronic inflammatory diseases such as ulcerative colitis, Crohn’s disease, atherosclerosis or arthritis which, like lymphedema, have no cure. We do not know much about the status of the lymphatic pumping and lymph drainage in these diseases’ inflamed tissues. As a general hypothesis, we proposed several years ago that inflammation, fat deposition

Studying inflammation-induced lymphatic dysfunction to better understand lymphedema How inflammation contributes to depravation of lymphatic pumping By Dr. Pierre-Yves von der Weid

Pierre-Yves von der Weid, PhD is Associate Professor at the Cumming School of Medicine, University of Calgary, where he studies the roles and functions of the lymphatic vessels in health and disease. He is currently leading the Lymphedema Research and Education Program in the Snyder Institute for Chronic Diseases, an Alberta initiative supported by the Dianne and Irving Kipnes Foundation.

Schematic illustration of the initial lymphatic vessels.

Vein

Artery




and lymphatic dysfunction/lymph stasis occur as a consequence of each other in a vicious circle manner, each phenomenon exacerbating the others further.

Is lymphatic pumping compromised during inflammation?When efficiently tuned, lymphatic pumping avoids swelling and, because lymph also trans-ports antigens and immune cells, promotes an adequate immune response. However, whether this holds true during inflammation was not known until it was demonstrated in the last few years that mediators, abundantly produced during inflammation, were able to alter lymphatic pumping. Most of them cause the frequency of the contractions to slow down, which suggests that lymph flow also slows down, potentially triggering swelling. The decrease in lymphatic pumping in response to inflammatory mediators is an indication that drainage might be compro-mised during inflammation. To more directly assess the effect of inflammation on lymphatic function, we examined pumping in lymphatic vessels isolated from animal models of intes-tinal inflammation. Again, we observed that lymphatic pumping was altered and that some chemical mediators, such as nitric oxide and prostaglandins, demonstrated in earlier studies to affect pumping, were indeed responsible for the dysfunction. Further experimental exam-inations revealed that other molecules, namely cytokines, such as TNF-a and IL-1b—critical in the initial steps of an inflammatory reac-tion—play an important role in mediating the lymphatic dysfunction. Our findings led to the conclusion that during inflammation molecules present in the environment of the lymphatic vessels, or produced by lymphatic vessel cells, caused an inhibition of lymphatic pumping. Given the role of pumping in lymph drainage, inhibition of this activity may lead to retention

of fluid in the tissue and edema/swelling. These studies are based on animal models of acute inflammation. In this situation, the problem is controlled and inflamma-tion quickly settles. However in the many diseases mentioned above, inflammation is not resolved and becomes chronic. Whether and how the lymphatic system is affected during chronic inflammation has not been looked at. To address these questions, we are currently examining the lymphatic system in a mouse model of Crohn’s disease. Our initial findings reveal that lymphatic vessels draining the inflamed gut are larger than usual, just as we had observed during acute inflammation. This observation suggests that, like in acute inflammation, lymphatic drainage is also altered during chronic inflammation. The lymphatic system is further impli-cated in inflammatory diseases. In particular, inflammation leads to the growth of new lymphatic vessels in inflamed areas, even in some usually devoid of lymphatics. The importance of this feature called inflammation-induced lymphangiogenesis in the inflammatory process is under debate as well as to whether these new lymphatic vessels promote the resolution of inflammation or help perpetuate it to a chronic state.

Does impaired lymph drainage promote inflammation?Although a dysfunctional lymphatic system is central to the development of lymphedema, whether this dysfunction is a contributing factor to the other changes, such as inflam-mation, fibrosis and fat accumulation seen in this condition, is not known. In line with our

hypothesis that each of these features might worsen the others in a vicious circle manner, the possibility that impaired lymph drainage causes inflammation definitively exists. Indeed, other researchers refined our initial hypothesis, proposing that in lymphedema, lymph stasis, caused by initial impaired lymph drainage, leads to inflammation, fat accumulation and fibrosis, which further exacerbate the lymphatic dysfunction. This hypothesis has since been successfully tested experimentally. Specifically, the researchers used the mouse-tail model, where the tail of the animal was surgically processed to cause an edema, mimicking

lymphedema and demonstrating that lymph stasis results in significant

deposition of subcuta-neous fat, increased fibrosis in this fat and occurrence of inflamma-tion. These pathologic findings mimic very closely the changes observed in clinical

lymphedema and make the mouse-tail model a valid animal model of hu-man lymphedema. These observations are very important, because the research community is in dire need of animal models that recapitulate this condition. This model is now used to help understand the molecular mechanisms that regulate the pathophysiology of lymphedema.

Future perspectivesResearch on the lymphatic system has been neglected for many years. New techniques and new molecular markers allow a more thorough identification of lymphatic structures. The landscape is rapidly changing and we are now getting a better appreciation for the important roles and functions this system is playing in human physiology and diseases. This renewed interest is leading many more researchers to enthusiastically investigate the lymphatic system and related diseases such as lymphedema. Progress is being made and our understanding of this system is growing, leading to the reasonable expectation that treatments alleviating the outcome of lymphedema will be developed. LP

A comprehensive set of references can be found at www.lymphedemapathways.ca.

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will be able to establish a treatment plan for individuals with chronic extremity lymphedema and perform the treatment accordingly. (135 total hours) $3150

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Certification in Manual Lymph Drainage (Vodder Techniques)Certification in the Manual Lymph Drainage techniques as developed by Dr. Emil Vodder, including education on the lymphatic system and treatment sequences of MLD to treat migraines, chronic fatigue, post-operative/post-traumatic edema, pain and much more. (40 hours) $995

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Dianne and Irving Kipnes Lymphedema Imaging Suite.


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Our Lymphedema Management courses are widely known as the best in the industry! Complete Lymphedema Certification CourseOur Accelerated Hybrid Online Program blends the optimal mix of Internet-based online instruction of 45 hours with live classroom instruction of 90 hours to provide an unparalleled education. Participants become completely certified in just 9 days in class! This certification course covers the four components of CDT, the management of lymphedema, and much more! With course completion, participants will be able to differentiate between a variety of peripheral edemas, and understand the medical indications and contraindications of CDT. Therapists

will be able to establish a treatment plan for individuals with chronic extremity lymphedema and perform the treatment accordingly. (135 total hours) $3150

Academy of Lymphatic Studies is endorsed by the

Call for more US dates and locations, or to ask about discounts and financing options.

Complete Lymphedema Certification Course (135 hours)

June 4-12July 9-17

Calgary, ABToronto, ON

R E G I S T E R N O W !

LymphedemaManagement Courses

A variety of helpful support materials included in course tuition

CLT Recertification Program

Now Available Online Recertify and refresh your

skills today! Call for more details

Lymphedema Management SeminarIntroduction to the management of lymphedema for uncomplicated cases affecting the upper and lower extremities, using Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy. (31 hours) NOTE: THIS IS NOT A CERTIFICATION COURSE. $895

Certification in Manual Lymph Drainage (Vodder Techniques)Certification in the Manual Lymph Drainage techniques as developed by Dr. Emil Vodder, including education on the lymphatic system and treatment sequences of MLD to treat migraines, chronic fatigue, post-operative/post-traumatic edema, pain and much more. (40 hours) $995

Tuition in US dollars.

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Discounts andFinancingOptions

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Surgical Treatment

Surgery for lymphedema has become increasingly sophisticated and effective.

However, surgical recommendations can vary widely between surgeons and treatment centers. The outcome of lymphedema surgeries also highly depends on the training, experience, and relevant expertise of the surgeon and lymphedema therapist. No single type of surgery is optimal for all presentations. Rather, careful patient selection after a complete course of conservative lymphedema therapy is critical to the success of any lymphedema surgery. Modern lymphedema surgeries are much more precise and less invasive than previous radical attempts at a surgical cure. Older procedures, such as the Charles Procedure, involved aggressive removal of the skin and deeper tissues down to the level of the muscle fascia, with skin grafts placed over the raw areas. Fortunately, such invasive procedures are now reserved only for a very small

number of extreme cases involving thickened, pendulous and inflamed skin and tissues. Current lymphedema surgeries have been shown to produce significant and lasting reductions both in the size of the affected arm or leg and also the amount of therapy and compression garment use required for treatment. Individualized lymphedema therapy integrated into the treatment plan before and after surgery also is essential in achieving excellent results. Non-surgical management continues to remain the first line standard of care for lymphedema. This is an essential first treatment step for all of our patients, and patients must have been seen and treated

with non-surgical lymphedema therapy before they are considered for any type of lymphedema surgery.

Patient SelectionOur treatment approach focuses on the appropriate treatment of both the fluid

and solid components of lymphedema swelling. Proper evaluation and patient selection are critical in achieving effective and lasting results. At first, lymphedema swelling is composed mostly of lymphatic fluid. In this early stage, the swelling is more amenable to conservative non-surgical

treatment. Over time, the lymphatic fluid can bring about permanent deposits of solids in the tissues that are more difficult to treat. Lymphedema swelling also greatly increases the risk of dangerous infections, called cellulitis, which are often much more severe in patients with lymphedema. Lymphedema swelling in the arm or leg can often progress to cause functional impairments that interfere with work and activities of daily living.

Surgery for lymphedema treatmentModern procedures have found greater precision in treating lymphedema

By Dr. Jay Granzow

Dr. Jay Granzow MD, MPH, FACS is an internationally known Plastic Surgeon whose specialties include both microsurgery and lymphedema surgery. He is currently Associate Professor of Surgery in the Division of Plastic Surgery at the UCLA David Geffen School of Medicine, and is Assistant Chief of Plastic Surgery at Harbor-UCLA Medical Center in California



The fluid predominant portion of lymphedema may be treated effectively with physiologic surgeries that involve transplantation of lymphatic tissue, called vascularized lymph node transfer (VLNT), or involve direct connections from the lymphatic system to the veins, called lymphaticovenous anastomoses (LVA). VLNT and LVA are microsurgical surgeries that can improve the patient’s own physiologic drainage of the lymphatic fluid, and we have seen the complete elimination for the need of compression garments in some of our patients. These procedures tend to have better results when performed when a patient’s lymphatic system has less damage. Therefore, patients with early stage lymphedema tend to have more impressive results with these procedures. Some studies have shown variable results when VLNT or LVA are used to reduce volume. For example, in a study by Damstra, LVAs performed for patients with solid predominant lymphedema found little additional improvement in reduction of excess volume. We find better results using conservative therapy and compression first to reduce the excess fluid volume, and then using VLNT or LVA to reduce the amount of compression and therapy needed to maintain the volume reduction. Patients with more chronic presentations in which the excess volume is mainly solid will require removal of the solids with suction assisted protein lipectomy (SAPL) first. The best candidates for lymphedema surgery are patients who have tried and failed a properly planned and administered lymphedema therapy regimen that usually includes manual lymphatic drainage (MLD), fitted compression garment use and bandaging. One or more courses of complete decongestive therapy (CDT) usually have been performed. Good candidates are willing to continue with lymphedema therapy before and after any surgical procedure, although it is often possible to reduce the therapy and compression garment requirements after a successful surgery. Poor candidates for lymphedema surgery are patients that have not or are unwilling to have lymphedema therapy, are looking for a “quick fix” type of procedure, or who are greatly overweight. Obesity and morbid obesity

usually produce poor surgical outcomes not only with lymphedema surgeries but also with surgeries in general. Meaningful weight loss through a coordinated program, which could include appropriate weight loss surgery, should be concluded prior to consideration for a lymphedema procedure.

Vascularized Lymph Node Transfer (VLNT)VLNT surgery involves the microsurgical transfer of a small number of lymph nodes and surrounding tissue from another part of the body, called a donor site, to the area affected by lymphedema. Multiple donor sites have been reported and include the

groin, torso, supraclavicular area (near the neck above the collar bone), submental areas (underneath the chin), and even lymphatic tissue around the stomach and bowel. This surgery has been shown in well-established medical literature for the last 15 years to be effective in reducing the swelling, symptoms and associated problems with lymphedema. The need for ongoing lymphedema therapy and compression garment use can be decreased significantly, and can result in the elimination of the need for routine compression garment use in some patients. The incidence of cellulitis and infection in the affected extremity has also been shown to decrease.

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Safety and surgical expertise are critical to minimize the rare risk of lymphedema occur-ring at the donor site. Reverse lymphatic map-ping can minimize this risk by mapping the lymph nodes draining the arm or leg closest to the lymph node flap donor site using a ra-dioactive tracer similar to the technique used in lymphoscintigraphy, or specialized blue dye taken up by the peripheral lymphatics. During the dissection of the lymph node-containing flap in reverse mapping, the lymph nodes draining the arm or leg are thus identified and preserved and only a small number of peripheral lymph nodes are harvested.

Lymphaticovenous Anastomosis (LVA)LVA surgery is the direct connection of lymphatic vessels to nearby veins. These connections are very small, usually much less than 1mm in diameter, and require supermicrosurgical expertise. The procedure was first described in 1969 by Yamada and subsequently by O’Brien in the 1970s. Significant advances in supermicrosurgical technique for LVA were further described by Koshima. Connections usually are made into veins with competent valves to allow the one-way movement of excess lymph back into the venous system. In the peripheral parts of the arm or leg, closer to the hands or feet, single or multiple superficial lymphatics are connected to veins. In the proximal areas, closer to the armpit or groin, the lymphatics are larger and fewer, larger connections typically are performed. The location and types of connections can vary considerably in patients and are dependent on the patient anatomy, surgeon experience, and the progression of the lymphedema disease itself. Since no donor site is required and only a fraction of the lymphatic vessels in the affected arm or leg are connected, LVA surgery tend to be the least invasive and have the lowest overall surgical risk and recovery among any of the lymphedema surgeries. This also makes LVA surgery ideal for use in the prevention of future lymphedema.

Suction Assisted Protein Lipectomy (SAPL)The solid-predominant swelling often found in later stages of lymphedema can be treated

effectively with a surgery called suction-assisted protein lipectomy (SAPL). SAPL surgeries allow removal of lymphatic solids and fatty deposits that are otherwise poorly treated by conservative lymphedema therapy, VLNT or LVA surgeries. SAPL surgery has been proven to be an effective and long-term solution for lymphedema in many patients. The procedure is different from standard cosmetic liposuction, which is not suitable to treat lymphedema. SAPL has been described using various names including circumferential suction assisted lipectomy

A lymphedema surgeon must work closely with a lymphedema

therapist to insure the best lymphedema therapy course is

given both before and after any surgical procedure.

FIGURE 1

Patient with compressible, fluid-predominant right arm lymphedema following treatment for breast cancer

with bilateral mastectomy, right lymph node dissection and radiation

therapy. A) Arms prior to surgery B) 4½ -year stable result following VLNT performed together with a

DIEP flap for breast reconstruction. She requires no daily compression

garment or therapy.

FIGURE 2

34-year-old woman with a history of congenital, non-compressible, solid-predominant lymphedema of the left leg for 17 years. A-C) Both legs prior to surgery. D-F) Both legs 4 months

following SAPL procedure for left leg.

A

B

C

D

E

F

A

B



(CSAL), liposuction in lymphedema and lympho-liposuction. First introduced in 1987, SAPL techniques have been refined over the years and have produced significant objective benefit in clinical trials with long-term follow-up. This surgery greatly decreases the incidence of severe cellulitis and hospitalizations requiring intravenous antibiotics to treat such infections. Medical literature overwhelmingly supports the safety and efficacy of this surgical treatment. We know of no studies or reports which have shown the procedure to be ineffective or harmful to patients if performed properly by an experienced surgeon with close coordination and post surgical treatment by a lymphedema therapist with SAPL experience. Published studies document a 75 per cent reduction in the incidence of infections and an average 90 to 110 per cent reduction in excess volume. These include a 21-year, prospective study of 146 patients with arms treated with SAPL, and a 10-year, prospective study of 56 patients with legs treated with SAPL. In our own published series, we have reported average infection reductions of about 80 per cent and excess volume reductions of 111 per cent in arms and 86 per cent in legs. Statistically significant reductions in lymphedema impact on daily activities, ability to work, improved limb function, reduced lymphedema-specific emotional distress, and a clear improvement in patient quality of life have also been shown. The safety of SAPL surgery has been studied in medical literature, which found the function of the lymphatics to be unaffected by the surgery. In our experience, SAPL appears also to improve the lymphatic drainage in the arm or leg after healing has occurred, and we have had no cases in which the patient’s lymphedema has worsened from the procedure. Continuous compression garment use under the care of a trained lymphedema therapist following the surgery is essential to prevent the reaccumulation of the pathologic lymphedema solids and fat. SAPL is very different from cosmetic liposuction in many ways including the type and amount of lymphedema

therapy required, the way the procedure is performed, the length of the surgery and solid materials removed and need for progressively smaller, specialized, custom-fitting garments after surgery. Lymphedema therapy performed by a specialized lymphedema therapist with specific experience with the SAPL is also essential to proper outcome following the procedure and cannot be substituted with a simple set of postoperative written instructions to the patient or therapist.

Importance of integrated lymphedema therapyLymphedema therapy that is carefully integrated into any surgical treatment plan is of paramount importance. A lymphedema surgeon must work closely with a lymphedema therapist to ensure the best lymphedema therapy course is given both before and after any surgical procedure. This is especially true for the SAPL procedure, where pre- and postoperative planning, measurements, and lymphedema therapy are vital to the success of the surgery. Ideally, long-term lymphedema therapy

is administered by the patient’s local lymphedema therapist under the direction of the lymphedema surgeon or surgical lymphedema therapist.

Combined and staged lymphedema surgeriesEffectively treatment with lymphedema surgery now includes using multiple surgeries with proper therapy. Physiologic procedures such as VLNT and LVA can be combined during the same operation or in sequential operations for increased effectiveness. Staged procedures can also be used to treat both solid and then fluid components of lymphedema separately. For instance, VLNT/LVA can be performed once healing after the SAPL surgery is complete to help address the persistent accumulation of lymphatic fluid and decrease the need for long-term compression garment use. We have documented significant reductions both in excess limb volume and also in the requirement for postoperative garment use in medical literature with the staged SAPL and VLNT combination of procedures. Overall, multiple effective surgical options for lymphedema exist. Surgical treatments are not a “magic bullet”, and should be pursued in the context of continuing lymphedema therapy and treatment to optimize each patient’s outcome. When performed by an experienced lymphedema surgeon as part of an integrated system with expert lymphedema therapy, safe, consistent and long-term improvements can be achieved. LP

A comprehensive set of references can be found at www.lymphedemapathways.ca.

Editor’s Note:Editors Note: It is important to note that patients are carefully selected and not every surgeon can reproduce these results. These specialized surgical pro-cedures are still evolving in various parts of Canada as the medical community awaits more research data and as such are not readily available.

FIGURE 3

Patient with a 4-year history of chronic, non-compressible,

solid-predominant lymphedema following history of right breast

cancer treated with lumpectomy, lymph node dissection and radiation

therapy. A) Prior to surgery B) 28 months following combination of SAPL followed later by left VLNT. She achieved a stable reduction in

volume of 95%, is out of compression garment approximately 12 hours

every day, and has less shoulder and torso swelling as well.

A B



Sponsored Editorial

Intro/PurposeThis article summarizes 49 case studies that were conducted to determine the suitability of the circaid® reduction kit Iine of products as compression devices for the intensive treatment phase of upper and lower extremity lymphedema. The study examined the devices’ therapeutic efficacy, as well as clinician and patient satisfaction.

BackgroundLymphedema is swelling that occurs when excessive protein-rich lymph fluid accumulates in the interstitial tissue. Lymphedema is one of the most poorly understood, relatively underestimated andleast researched complications of common diseases like cancer, and thus the prevalence of lymphedema within the general population is largely unknown. For those who are diagnosed with lymphedema, the standard of care consists of meticulous skin care, manual lymphatic drainage, exercise therapy, inelastic com-pression and eventually compression garments for maintenance. The use of compression bandaging, although proven effective in reducing edema, has its drawbacks. The application of inelastic compression bandages is time consuming and requires a skilled clinician. Furthermore, as some patients are not able to effective-ly bandage themselves, this treatment strategy does not provide sustained therapeutic levels of compression and requires frequent follow up visits from patients. Lastly, wearing bandages can nega-tively impact the patient’s quality of life in regards to comfort and hygiene, resulting in low compliance rates.

What is circaid® reduction kit?The reduction kit product line consists of one-size-fits-all,easy-to-use, inelastic, instantly adjustable compression components that are fitted to the patient’s limb size and shape on site. These upper and lower extremity wraps are made of a patented, breathable material that has just enough elasticity to follow the contour of the limb, maximizing comfort and reducing slippage. Each component consists of a series of offset bands that are wrapped around the limb and fastened with hook and loop closures, allowing for quick and easy application, as well as removal and adjustment. First applied by a clinician, the patient can then apply them just as easily and quickly. This increases compliance and hygiene, greatly improving results with far fewer follow up sessions. The products also feature a Built-In-Tension system which ensures the patient can apply the same compression as the clinician. The quick simple and therapeutic application of the reduction kit gives the patient a comfortable, clean and effective system that does not unduly hinder their lifestyle or state of mind. The circaid® reduction kit gives clinicians and patients the simplest and most effective tool for acute, early-phase edema both in the clinic and at home.

The StudyPatients used the reduction kit components as assessed and directed by the therapist. The study was conducted by 11clinicians/therapists in 8 facilities in the US and abroad. The reduction kit was applied on 49 patients who suffered from lymphedema in the upper or lower extremities. The study subjects consisted of 15 male and 34 female patients that ranged in age from 38 to 87 years. Standard protocols of regular check-up appointments, routine skin care, and Manual Lymph Drainage were followed throughout the treatment period. The assessment considered ease of initial application, application time, fit, comfort, ease of use, reduction of edema, patient hygiene, compliance and overall quality.

Results71% patients used the reduction kit on their legs, 33% lower leg and 39% whole leg, while 29% used them on their arms. 78% of patients wore the reduction kit day and night. The initial mean volumes (and standard deviations) for the entire affected limbs were 19900cm3 +/-16500* for lower leg group, 19300cm3 +/-12500* for whole leg group and 4340cm3 +/-1430 for arm group. The final mean volumes (and standard deviations) were 17700cm3 +/-14900* for lower leg group, 17500cm3 +/-10900* for whole leg group and 3930cm3 +/-1190 for the arm group. The average total volume reductions for all lower leg cases were 2150cm3 +/-3940*, for all whole leg cases is 1810cm3 +/-1870*, and for all arm cases were 414cm3 +/-406. The average total volume reduction for all cases in the trial was 10.8%. When lower leg volumes are isolated, their affect on the upper leg is discernable. The initial mean volume (and standarddeviation) of only the lower leg was 8660cm3 +/-5320, the final mean volume was 7900cm3 +/-5230 and the average overall volume reduction was 786cm3 +/-1363. Therefore, the average percentage volume reduction was 9.69%. 79% of patients stated they would continue to use the product to maintain their condition with 70% describing the reduction kit as “Excellent”. By the end of the trial, clinicians view of the reduction kit improved from the initial evaluation and reported that the overall quality of the reduction kit was “Excellent” in over 85% of the case studies. For all evalutations by patients and clinicians, the mode rating of the overall product quality was the highest possible of 1.83% of patients and clinicians reported “Excellent” hygiene while using the reduction kit compression system. By the end of the study, 80% of clinicians found the reduction kit components to still be in “Excellent” condition. Finally 67% of clinicians gave the reduction kit an “Excellent” rating for its ability to control edema and the improvement of the patient’s skin and edema.

Use of circaid® reduction kit for decongestive lymphatic therapy By Circaid® Medical Products, Inc, a Medi Company

The views expressed in this report are those of the advertiser. Inclusion does not constitute an endorsement nor reflection of the views and opinions of the Canadian Lymphedema Framework and its Editorial Board.



Case Study Highlights:The remainder of this article displays two case reports of specific patients who participated in this evaluation.

The views expressed in this report are those of the advertiser. Inclusion does not constitute an endorsement nor reflection of the views and opinions of the Canadian Lymphedema Framework and its Editorial Board.

G

H I

Case Example 2This case is about a 72-year old woman who was being treated for bilateral lower leg swelling. She was fitted with two reduction kit leg components as well as circaid® compression anklets. When fitting the system, the therapist reported that the leg components were very fast and easy to cut to size and fit, and that the fit was excellent (Fig. G). When the patient was asked about her experience with the reduction kit after having worn them for at least 1week, she reported that she was thrilled with how easy it was for her to use, how well it fit, and how well it contained her swelling. She reported that she had been wearing the components day and night and commented that she is very satisfied with how comfortable the components are and with the results she is seeing. Upon completion of this patient’s evaluation, the therapist gave “Excellent” scores across the board: control of edema, compliance, patients’s ability to use the system, patient’s hygiene, change in patient’s skin condition, change in swelling, and overall quality. She specifically commented that this patient’s compliance increased with the use of the reduction kit system, and that the patient has requested to be put into a circaid® product for maintaining her swelling long-term. In 68 days she experienced 12.2% total volume reduction {Fig.H&I).

For a copy of the complete study please email: [email protected]

Case Example 1This 74-year-old man was treated for bilateral below knee swelling using the lower leg circaid® reduction kit. The therapist who fitted the reduction kit to this patient reported that she found the leggings very easy and quick to cut to size and apply, that they conformed well to the patient’s leg and rated the overall quality of the product as “Excellent” (Fig. A). This patient intermittently wore the system day and night. At a follow up appointment, he reported that he was satisfied with the fit of the reduction kit system, that it was comfortable and easy to apply and remove, and that it controlled his swelling quite well. He was also very satisfied with being able to maintain his hygiene, due to the quick and easy removal and reapplication of the system. When this patient’s evaluation concluded, his skin condition rating went from 5 “Poor” to 2 “Excellent”. This patient’s change in edema rating was also “Excellent”. After only 22 days of wearing the reduction kit system he experienced 21.9% localized volume reduction (Fig. B&C). Overall, the patient was very satisfied with the reduction kit lower leg component as they were much easier to apply than the compression stockings he had been wearing. The patient was able to be compliant with the reduction kit.

B

A

CBEFORE

BEFORE

AFTER

AFTER


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Research Perspectives

Living with a chronic disease often means shouldering psychosocial burdens that

are inextricably entwined with daily life. Some cancer treatments can damage the lymphatic system, leaving anywhere from 3-30%1 of cancer survivors with secondary lymphedema following cancer (SLC), a chronic disease that presents permanent challenges that must be managed long after the cancer treatments are over. Cancer is commonly considered to be a temporary condition, and most people undergo cancer treatment hoping they will be cured and be able to return to their “normal life” that was interrupted by cancer. Being diagnosed with SLC defeats that hope, and the new reality of life with SLC is often incompatible with expectations of resuming the same life and activities after surviving cancer.

“You fight to survive cancer and then you’re left with a handicap and it’s a lifelong thing. It’s not something you ever get over, that’s the hard part.”1

The nature of lossFor many, SLC is a life-long reminder of their cancer experience, and a source of significant inconvenience and distress. Life with a disability is often riddled with paradoxes,

one of which is being visibly marked, while personal experiences, losses, and challenges remain hidden. Managing SLC comes with restrictions and limitations that are felt in every aspect of daily life, both visible and invisible, which can contribute to a loss of identity that creates emotional distress. Swollen limbs and compression garments are outwardly visible markers of illness. Less visible is the restriction of clothing and jewellery choices, which influences the image a person would like to present.

“It is so hot wearing a compression sleeve and it just draws more atten-tion to my arm than if it was swollen. I don’t like bringing attention to the fact that I had cancer. I just want to put it behind me, so this sleeve isn’t really something I wear unless I feel I really have to.”2

Some individuals choose to conceal swollen limbs and compression garments, which also restricts their choice of clothing and affects their personal image and style, as well as how others perceive them. Successfully concealing those visual signs of SLC creates other issues, including the fact that without them, disability becomes invisible.

“I’ve actually been yelled at by one older gentleman saying that I was taking up the [disabled parking] space of somebody that would really need it.”2

SLC also limits the type and duration of activities a person can engage in. Not only is this loss felt in leisure and work activities, but also the ordinary activities of daily life. All of these things tie into a person’s identity, and the impact of these losses in function can be very visible and induce feelings of disability.3

“I’m a spinner so I use my right foot a lot….and I’m supposed to keep my leg up as much as possible, so yeah, that kind of interferes with everything.”2

This also includes limitations to participating in self-care activities, which stems from a lack of information about SLC even among physicians and other health professionals.

“The doctors…don’t regard lymph-edema as anything which requires treatment. It’s a cosmetic thing from their point of view, not something which needs to be treated.”2

The support that is available for SLC varies, and is also influenced by the lack of aware-ness about the condition. Some programs

Names and affiliations of all authors

Ryan Hamilton, Associate Professor, Psychology, University of New Brunswick

Roanne Thomas, Professor, Health Sciences, University of Ottawa

Yvonne Anisimowicz, Research Assistant, Psychology, University of New Brunswick

Psychosocial considerations of lymphedema Understanding loss and hope

By Ryan Hamilton, Roanne Thomas and Yvonne Anisimowicz



funded by breast cancer organizations focus on SLC in the upper limbs and are limited to women who have survived breast cancer. Even when SLC is visible, the full impact of SLC is not always understood by friends and family. Managing SLC often requires deliberate planning and balancing of activi-ties, and unplanned events cannot always be accommodated. This loss of spontaneity can colour a person’s perception and approach to life, leaving some individuals unable to fully engage in the present because of a need to always be wary of negatively affecting the future.

“It’s always no matter what you do, be careful you don’t make it worse.”2

Renegotiating hopeHope is defined as a multi-dimensional life force, a coping resource, and a necessity for coping with illness. In the face of the losses related to living with SLC, hope takes on new meaning. Hope can look very different in someone with a chronic condition than in someone whose condition is not permanent. It also varies widely between different people with

SLC. Although there is no cure, many

people with SLC

still hope for a return to normality. For some, this means their pre-cancer lifestyle. For others, this means adapting to a new normal that includes living with SLC.

“I personally hope that I could get back to my normal living, that lymphedema would be an aspect of my life, but not define me.”1

Rather than hoping for a cure, some people hope to avoid any worsening of their symptoms, and incorporate coping actions that support that goal.

“It’s part of getting dressed in the morning. It’s like somebody who has one leg. They have to put on their prosthesis in the morning. I have to put on my sleeve.”1

Coping with SLC is often time-consuming and can add financial stresses.3 Successfully managing SLC symptoms can be a source of hope, and an increase in symptoms can induce feelings of hopelessness.

“What gives me hope is the fact that it’s under control.”1

Taking an active role gives many people the strength to live hopefully and success-fully cope with SLC. For some this means raising awareness or getting involved in fundraising activities; for others, it means being actively involved in self-management. One way to think hopefully is to reframe the restrictions and limitations of SLC to high-light something positive instead of focusing on the negative aspects.

“Sometimes I get to do different jobs [when feeling well]…[however] I have a really sore arm today so I can have a beer with the guys.”1

Addressing the psychosocial aspectsBecause SLC is a relatively unfamiliar chronic condition, not only to the general public but also to health care professionals, cancer survivors often find it challenging to find information and understanding. Opportunities to make SLC and the associated emotions visible could be highly beneficial, especially since there are currently few resources available to assist with the psychosocial adjustments necessary to living well despite various limitations and constraints and the associated losses. Coping with SLC is different than coping with cancer, and the hopes embraced during acute cancer care need to be renegotiated when faced with SLC, transitioning from cure-based hopes to more practical hopes. Understanding the nature of loss relating to living with SLC, and the positive influence that action-oriented hopes can have on coping, could inform development of new and more holistic initiatives in cancer rehabilitation and survivorship programs. With this in mind, our research team has developed a series of workshops to help foster hope and coping for those living with lymphedema secondary to cancer. These workshops have been piloted in Ottawa and will be offered in Saint John and Montreal in the near future. For more information on our Learning to Live with Lymphedema research and workshops, please visit http://www.roannethomas.ca/research/learning-to-live-with-lymphedema.html. LP

References 1. Hamilton R, Thomas R. Renegotiating hope

while living with lymphedema after cancer: A qualitative study. European Journal of Cancer Care. Published online September 14, 2015 (doi: 10.1111/ecc.12385).

2. Thomas R, Hamilton R. Illustrating the (in) visible: Understanding the impact of loss in adults living with secondary lymphedema after cancer. International Journal of Qualitative Studies on Health and Well-being. 2014;9:10.3402/qhw.v9.24354. doi:10.3402/qhw.v9.24354.

3. Fu MR, Ridner SH, Hu SH, Stewart BR, Cornier JN, Armer JM. Psychosocial impact of lymphedema: A systematic review of literature from 2004 to 2011. Psycho-Oncology. 2013; 22: 1466-1484. doi: 10.1002/pon.3201

Our research team has developed a series of

workshops to help foster hope and coping for those

living with lymphedema secondary to cancer.

HAVEONLY

POSITIVE

EXPECTATIONS



Affiliate Profile

Atlantic Clinical Lymphedema NetworkThe Atlantic Clinical Lymphedema Network (ACLN) is a group of Complete Decongestive Therapy (CDT) trained physiotherapists, nurses and massage therapists who work in New Brunswick, Nova Scotia, Prince Edward Island and Newfoundland in the care and management of people who suffer from lymphedema. Many of us are employed in hospital settings.

We developed a standardized patient handout several years ago so that we could deliver a common message to our patients with lymphedema. Each Atlantic province provides content and an advertisement for our quarterly ACLN insert in the national Pathways magazine. Two years ago we looked into forming an association but learned

that it would need to be provincial. The group felt that each province would be unable to sustain individual associations at that time since we as clinicians didn’t have the

manpower or the time that would need to be devoted to such a task. Many of

us work full-time and are raising young families.

We are happy that Newfoundland and Labrador

has recently been able to form the Lymphedema

Association of Newfoundland and Labrador (LANL) in order

to better support people lymphedema in their region. This region still belongs to the ACLN and continues to contribute through the magazine insert. The ACLN’s website is www.atlanticlymph.ca, where they welcome inquiries from the public. We also offer one another frequent clinical support through group email clinical questions and answers. LP

The ACLN has come together over the past six years to share advanced training and provide support for one another regarding patient care.

We hold regular quarterly teleconferences to share local progress in awareness, improvements to care, clinical case questions and research. Over the years we have hosted therapist training courses available to our members as well as other CDT trained therapists which have included;

• “Advanced Lymphedema Treatment” from the Norton School (By Nicole Stout, PT, CLF-LANA)

• “Kinesiotaping for Lymphedema” (by Roth Coopee PT)

• “Advanced Management of Lymphedema” (by Julia Osborne PT)

• “Advanced Jobst Fitter’s Training“ (by Hans von Zimmermann)

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Heidi Tanninen, Family Caregiver, Central Region

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Suzanne Beland, Professional Caregiver, Central Region

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Hints and TipsSecurity measuresWhen flying, give yourself lots of time to get through airport security, and then wrap your limb once you are through security. I find that security personnel are mistrustful of compression gloves/sleeves and I am always checked for gunpowder, patted down etc. Sophia Lang, Calgary, Alberta

Change your outlookCreate a positive attitude. As you are putting on your

garment think about

the super-hero you are.

This works well for children with

lymphedema but could have positive outcomes for all patients. Kim Avanthay, Lac du Bonnet, Manitoba

Tai Chi benefitsWellspring Calgary (and other cities) offers Tai Chi classes. This exercise has many benefits, one of which is deep breathing and movements, which can help the flow of lymph. LP Betty Thompson, Calgary, Alberta

Send us your hints and tipsWhy 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 [email protected].

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Education

Canadian and International EventsMarch 12, 2016 Lymphedema Association of Manitoba (LAM) Winnipeg, Manitoba is holding their 4th Annual Awareness Day

Symposium in Winnipeg, Manitoba at the Hilton Winnipeg Airport Suites. n www.lymphmanitoba.ca

May 6 – 7, 2016 The Lymphedema Association of Saskatoon, Saskatchewan (LAS) is holding a 2-day AGM Saskatchewan and Lymphedema Multidisciplinary Symposium.

Drs Rockson and Cheville will be returning as guest speakers. n www.sasklymph.ca

May 26 – 28, 2016 2016 Asia Pacific Lymphology Darwin, Australia Conference. Organized jointly by the ILF (International Lymphoedema Framework) and the ALA (Australasian Lymphology Association). Online registration is now open. Be sure to sign up for free as an ILF affiliate (www.lympho.org) to receive a discounted registration rate. n www.2016asiapacificlymphologyconference.com

Aug 31 – Sep 4, 2016 Registration is now open for the Dallas, Texas 12th National Lymphedema Network (NLN) conference: Shaping the Future through

Commitment, Evidence and New Frontiers. n www.nln.org

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

Lymphedema Association of Ontario

Lymphedema Association of Quebec

Lymphedema Association of Saskatchewan

Charitable Registration 85160 1260 RR0001

Silver Sponsorship

About the CLFThe Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada.

CANADIANLYMPHEDEMAFRAMEWORK

PARTENARIAT CANADIEN DULYMPHOEDÈME

Letters to the

Editor...

Letters....

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

[email protected]

Hi Anna, I thought the Fall 2016 was a very good edition of Pathways.

A nice balance between research,

therapists’ perspective (Katherine

and Jen’s article), patient interest

and advocacy. Well done.Robert Harris Vodder School International

Victoria, B.C.

Hello. Beautiful work on the new website! I am thrilled. It will provide relevant support to Canadians who suffer from lymphedema, their families, and health professionals.

Sonja Redden Prince George, B.C.

Dear Canadian Lymphedema Framework

I would like to congratulate you on

your 15th edition of Pathways. I am very

happy to be a part of the awareness

campaign for lymphedema, and would

like to wish your organization all the

best in the future and with upcoming

issues of the magazine.

Sincerely,

Wayne Ewasko, MLA Lac du Bonnet

Constituency Critic for Education and

Advanced Learning

Winnipeg, Manitoba (Legislative Office)

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Documents

Canada’s Lymphedema Magazine Pathways · 2015-12-21 · “I wear a Juzo arm sleeve and gauntlet all day every day. I now do a variety of exercises including a lot of walking”