Pathways Fall 2016 (Volume 5, Issue 4)

Canada’s Lymphedema Magazine

Pathways

NEW

Onli accene ss See pag e3

FALL 2016

Empowering patients and professionals

Lipedema overview International conference review Foot care Customized yoga NOUVEAU... Une sélection d’articles traduits en français au fr.infolympho.ca/revue-pathways

3M and 3M Science. Applied to Life. are trademarks of 3M. Used under license in Canada. © 2015, 3M. All rights reserved. 150601127E

Therapeutic compression.

Stays in place even when your patients don’t.

Your patients want to move and engage fully in daily activities.

3M™ Coban™ 2 Layer Compression Systems are designed to deliver comfortable and therapeutic compression for the management of venous leg ulcers and chronic edema — without slipping.

Learn more at 3M.ca/Coban2Layer

Editor’s Message

“Fall back” with Pathways

W

ell, I’m back from Darwin, Australia the site of the most recent 2016 Asia Pacific Lymphology Conference. This event was an integration of the 6th International Lymphoedema Framework Conference and the 11th Australasian Lymphology Association Conference. “New Networks, New Solutions” was the theme and 425 registrants gathered to hear a prestigious list of keynote and invited international speakers.

You will find a synopsis of the conference highlights, compliments of Robert Harris and Katherine Styrchak, starting on page ten.

There were several sessions on other lymphatic disorders such as lipedema, a related disorder that is even less understood by most people than lymphedema. We are grateful to Dr. Karen Herbst (also a key note speaker at the Darwin conference) and Natalie Munguia for their comprehensive overview of this abnormal fat disorder experienced by many women. We are hopeful that some readers, both patients and health care providers will learn from this article and at least be able to find some resources to help them. Be sure to check out the references and some lipedema links on our magazine website.

At Pathways, we continue to advocate for self-care and we hope that two articles in this issue will encourage you to take care of your lymphedema. Alexandra Fabbi, a

lymphedema patient looking for a way to incorporate exercise in her self-care routine, now teaches a yoga program customized for patients with secondary arm lymphedema.

We thank Alexandra for taking the initiative to help others with lymphedema and for sharing her story with Pathways readers.

Foot care for those living with lymphedema is another important aspect of self-care.

Gurdish Sandhu is a Canadian foot care nurse who has kindly contributed a practical article that should make taking care of your own feet a less daunting task.

Despite the importance of self-care, we all require professional medical attention from our healthcare providers. There is an evident lack of awareness of lymphedema in the medical community, so the task of educating primary health care providers often falls on the patients. Dr. Anna Towers provides some tips in Ask the Expert on how patients might discuss lymphedema with their own doctors.

Isa-Bella Leclair is the young woman who was featured on the cover of our Summer issue of Pathways. As you read her story “Lymphedema is not me,” I know you will be inspired by her journey to self-esteem with lymphedema. Her message that, “Everyone is different and that’s okay” has stuck with me and I hope that many people living with lymphedema can relate to her story and build their own confidence to find peace and acceptance with the physical changes that are a result of this condition.

An exciting enhancement to the Pathways magazine starting with this fall issue, is the opportunity to read the magazine online in digital format and on the device of your choice. As a subscriber, you now also have the benefit of accessing all archived magazines since our launch in 2012.

An exciting enhancement to the Pathways magazine starting with this fall issue, is the opportunity to read the magazine online.

Looking for a particular article or topic you are interested in? Simply type this in the search function to find what you are looking for.

It is not only readers who will benefit from this new format. Advertisers will appreciate this online platform as readers can click on their advertisement and be redirected to their company website. The benefit to the Canadian Lymphedema Framework (CLF) is that we will be able to learn where our readers are located, which articles they find of most interest and how long they spend on each page.

This data will help us plan the future direction of Pathways as we grow and expand the magazine.

My recent presentation about Pathways at the international lymphedema conference not only generated a lot of interest from international subscribers but also won the prize for “Best Presentation Outside of Asia Pacific Region”. Our sample magazines seemed to fly off the CLF exhibit table and many a delegate could be seen carrying around an issue of Pathways. We thank our subscribers, contributing authors, advertisers, sponsors, publisher, provincial affiliates and Editorial Board for making this magazine something we can all be very proud of. LP

Anna Kennedy

TO ACCESS PATHWAYS ONLINE Login information: www.canadalymph.ca/pathways-online User name: PathwaysSubscriber Password: magazine

Fa l l 2 0 1 6

Ly m p h e d e m a p a t h w a y s . c a 3

Contents

5

Lipedema: Abnormal female fat that just won’t go away Overview with treatment suggestions Fall 2016

n

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

Volume 5 Issue 4

Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates.

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

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

2016 Asia Pacific Lymphology Conference New Networks, New Solutions

10

Hosted by the International Lymphoedema Framework and Australasian Lymphology Association.

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

Taking care of your lower limbs Precautionary measures for lymphatic patients Putting your best foot forward.

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

18

Ask the Expert Approaching your doctor Tips on discussing lymphedema with your health care providers.

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

If you can breathe, you can do yoga For secondary arm lymphedema

20

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 Stock photos in this issue: CanStockPhoto Other photos are courtesy of A. Fabbi, K.Herbst, I.Leclair, D.Preston, K.Strychak and Lipedemaproducts.com

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

14

A custom approach to yoga developed by a lymphedema patient.

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

Lymphedema is not me A young girl’s journey to self-esteem with lymphedema Everyone is different and that’s okay.

23

Access to a selection of French translated articles is available at fr.infolympho.ca/revue-pathways

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

Accès aux articles traduits en français au fr.infolympho.ca/revue-pathways

Fa l l 2 0 1 6

Clinical Perspective

Lipedema:

Abnormal female fat that just won’t go away

Photo: Lipedemaproducts.com

Overview with treatment suggestions

By Karen Herbst and Natalie Munguia Introduction Millions of women have a type of excess fat that feels like small pebbles on their arms, lower abdomen, hips, buttocks and legs (gynoid area) that is painful, and resists extreme nutritional (anorexia, weight loss surgery) and physical fat loss attempts.

Located under the skin, normal subcutaneous adipose (fat) tissue or SAT and its underlying fascia and freely moving connective tissue fibers is not painful and it is what gives our bodies shape and form. Lipedema SAT, on the other hand has thickened and poorly mobile connective fibers forming a netlike structure under the skin, and applying pressure causes an aching, stabbing, bruise-like feeling. About 50% of women with lipedema have hypermobile skin, joints and blood vessels throughout the body; these vessels are easily damaged and can bleed into the tissue forming a bruise about 75% of the time.1 Lymphatics function well initially, but cannot sustain fluid flow out of SAT causing aneurysms to form in the lymphatics and they leak; the definition of lipedema is “fluid in fat.”

Lipedema begins around puberty but can develop or worsen after childbirth or at menopause - times of hormonal change.

Lipedema is often mistaken for obesity,

TABLE 1 1 TABLE

Conditions that may be confused with lipedema Condition

Similarity to lipedema

Obesity Excess gynoid SAT

• Excess abdominal SAT • Metabolic syndrome or diabetes

Madelung’s disease Excess SAT arms/back/neck

Legs not affected

Familial multiple Masses in the SAT lipomatosis

Lipomas dominate on abdomen, flanks, arms and legs

Dercum’s disease

Painful gynoid SAT; more women than men

Fibromyalgia-type signs and symptoms; more lipomas

Lipodystrophy

Gynoid SAT can be in excess

Distinct loss of SAT

Fibromyalgia

Pain in tissues

Gel-like masses in muscle/fascia

SAT = subcutaneous adipose tissue

lymphedema and other SAT disorders (Table 1). Confusing the matter is that lymphedema can develop as a comorbidity of lipedema, requiring not only complete decongestive therapy (CDT), but also deeper treatments to reduce the lipedema structure that inhibits flow through tissue. The SAT fluid - located in the interstitium, the area between and around cells, triggers adipocytes to grow. Lipedema SAT can grow to great extents damaging

Karen L. Herbst PhD, MD is a board-certified endocrinologist and Associate Professor at the University of Arizona (UA). She is the Director of the Treatment, Research, Education, Adipose Tissue (TREAT) program at the UA funded by the Lipedema Foundation.

Natalie Munguia is an undergraduate student at the University of Arizona (UA).

She is currently participating in the UA’s graduate college summer program UROCMHD (Undergraduate Research Opportunities Consortium-Minority Health Disparities).

Fa l l 2 0 1 6

Difference from lipedema

blood, lymphatic vessels, skin and muscle, potentially resulting in significant disability.

The pebbly feel to lipedema SAT comes from nodules the size of a grain of sand, grain of rice or a frozen pea that can feel soft or firm. For quick assessment, nodules are easily found around the cubit nodes (inside elbow) and the medial knee, areas near lymph nodes;1 nodules are more prevalent the more extensive the lipedema SAT.1 The nodules in the tissue can be found by placing the fingertips into the lipedema SAT then gently rolling them; lipedema SAT cannot be found by simply looking for the disproportion between the lower and upper body. The arm should be raised and the area next to the armpit squeezed to reveal congestion and pain in the SAT. The hands and feet are affected in about 22% of women, a sign of more extensive disease; the greater extent, Ly m p h e d e m a p a t h w a y s . c a 5

the higher chance of numbness, blood clots and shortness of breath.1 When the hands are affected, the head should be palpated to assess for lipedema SAT.2 Types and stages of lipedema Type refers to the location of lipedema SAT on the body (Figure 1). Stage refers to the appearance of lipedema SAT and skin; the stages of lipedema are not necessarily progressive. In Stage 1 painful nodular SAT expands under smooth skin in the gynoid distribution, and arms in 80%. The SAT can balloon over the ankle and wrist forming a “cuff” (Figure 1). Lymphedema may develop in Stage 1 but its occurrence is more prominent in Stages 2 and 3.1 In Stage 2, the skin’s appearance is that of a mattress, due to contraction of SAT fibers and fascia pulling down the skin and changing the structure of the lipedema SAT. The SAT nodules can coalesce to form larger masses, similar to a lipoma, often found on the anterior ankle.

In Stage 3, the skin can separate from the FIGURE 1

Stage 3 Type III lipedema (Different types of lipedema in color)

•T ype I: Present in the hip and buttocks region; ankle cuff is not present.

•T ype II: SAT is found in hips down to knees; ankles cuff is not present.

•T ype III: Hips, buttocks thighs and lower leg down to ankles; cuff is usually present.

•T ype IV: Arms are affected either only the a) upper arm, b) only the lower arm or c) both and a cuff is often present.

•T ype V: Knees to ankles are affected.

•T he arrowhead points to nodular lipedema tissue that is usually present in the area below the umbilicus.

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

underlying SAT forming “bubbles” in the skin most notable on the thigh. Lipedema SAT stretches and folds into lobules slowing blood flow into and lymphatic flow out of SAT (Table 2). Walking becomes difficult due to heavy legs, pain, and SAT lobules. The SAT on the inner legs pushes the lower legs apart causing a knock-knee stance (genu valgum). Fibrosis can develop in the SAT on the upper buttocks, hips and along the groin area and should be treated by deep therapy. Women can rapidly progress to Stage 3 lipedema especially if they have polycystic ovarian syndrome, obesity, lymphedema, or hypermobility such as Ehlers Danlos Syndrome HypermobilityType.1 Lipedema SAT structure Lipedema SAT has enlarged and/or contracted fibers. A decrease in blood flow causes the skin to feel cold.5 The adipocytes grow to huge sizes (hypertrophic) and break open, becoming surrounded by macrophages that eat the fat inside the dead cells;6 growth of new fat cells distorts the tissue further.

Fluid is found in the tissue and appears to be trapped or held between cells (Table 2).

Complications: Lipedema can affect mobility, reduce quality of life and affects many areas of the body such as the musculoskeletal, vascular, and soft tissues systems (Table 3).

Standard treatment of lipedema Treatment of lipedema requires a multipronged approach including manual lymphatic drainage (MLD) as part of CDT especially when lymphedema is present, but also requires deeper therapies to break down lipedema SAT structure such as myofascial release, Astym® or Quadrivas Therapy®. The lack of deeper treatments of the lipedema SAT may explain why half of women with lipedema did not respond to MLD in a German study.7 When affected, areas to be treated include the scalp,2 neck, all four limbs, trunk, back and abdomen, but also mons, labia and vagina by pelvic MLD if needed. nC ompression garments keep fluid in SAT to a minimum, reduce pain, and protect when skin elasticity is reduced. If lymphedema is not present in lipedema, the strength of the compression garment can be light, from 8-15 mmHg, though women

TABLE 2

Lipedema SAT Structure 6,37,38 Component Issue Large adipocytes

Hypertrophic (large); dead or dying

Small adipocytes

Replicating producing excess SAT

Capillaries

Leaky; thickened walls; dilated

Venules Thickened walls; dilated Lymphatics

Thick walls; hyperfunction early, leak later

Interstitium

Edematous; fibrous

Immune cells Macrophages; lymphocytes SAT = subcutaneous adipose tissue

commonly wear 20-30 mmHg for additional support. Women with very painful lipedema may not tolerate high compression levels.

High waisted leggings are preferred to prevent fluid moving up from the legs and accumulating in the abdomen. The ankle cuff may require special compression to prevent damage in this area. Women with lipedema SAT in their hands should be offered gauntlets to reduce hand swelling.

Whole body compression can be difficult, especially in warm seasons. Thinner or net-like breathable fabrics, kinesiotaping or sleeping in compression at night should be considered during these months. nS equential pneumatic compression pumps (pumps) reduce fluid and pain in lipedema SAT and empower women to improve self-care at home. Pump garments encircle the abdomen and pelvis when the legs are treated, and chest with arms to reduce SAT growth in these areas.8 Wounds improved and capillaries were less fragile after pump therapy for women with lipedema.9 Basic pumps for prevention of deep venous thrombosis where leg garments rise only to the groin are risky for lipedema; if used, pressures must be kept low to prevent lymphatic vessel damage, and a bike short-type compression must be worn to prevent growth of abdominal SAT. Fa l l 2 0 1 6

Lifestyle treatment Daily exercise and healthy food are standard of care for lipedema despite the fact that lipedema SAT does not shrink in response to lifestyle changes. nE xercise: Movement of any kind, from chair exercises, to swimming or whole body vibration, improves lymphatic and venous pumping by the action of muscle contraction.10 nH ealthy eating: Healthy eating is recommended for lipedema treatment, despite a lack of published diet studies in this population. In our practice, we have observed that some women have maintained a low level of lipedema SAT by following plant-based diets and daily movement. Food choices should provide optimal nutrition while lowering generation of inflammation. Patients who eat rainbow colored fruits and vegetables, fats from nuts, beans, avocados, olives, seeds and who lower their consumption of processed foods and carbohydrates, meats and refined grains11 have less pain and more energy.11 Women with lipedema who eat an Atkins type diet also have success with weight loss and pain reduction.

TABLE 3 TABLE 3

Complications and co-morbidities of of lipedema Complications and co-morbidities lipedema Musculoskeletal

Vascular

Soft Tissue

Other

Gait disturbance

Lymphedema

Obesity

Pain

Change in posture; Easy bruising lordosis

Decreased skin elasticity Psychological Thinning of the skin distress/anxiety

Arthritis (knees)

Lipomas

Shortness of breath

Cellulite

Slow metabolic rate

Edema

Hypermobile tissue Varicose veins Weakness/ muscle atrophy

Sluggish lymphatics; Cysts leaky lymphatics

Non-standard treatment of lipedema Supplements and medications are used in clinical practice and by patients to reduce limb heaviness, pain, and fibrosis. nL ymphagogues: Medications such as amphetamines increase norepinephrine and other nerve transmitters in the sympathetic nervous system (SNS) that bind and activate adrenergic receptors augmenting pumping of lymphatic vessels.12 Phentermine is a medication with similar pharmacologic activity to amphetamine, and is useful in reducing SAT. Plant derivatives such as citrus peelderived diosmin,13 Butcher’s broom (Ruscus

Stages of lipedema: Stage 1: The subcutaneous adipose tissue (SAT) feels like small pebbles and is tender but the overlying skin is smooth. There is a visible pad of fat below the knee on the inner side of the knee. Stage 2: The SAT is pebbly and tender but now the skin has indentations where the connective tissue has thickened and contracted pulling down the skin. The pad of fat below the knee has become very noticeable. Stage 3: The SAT feels pebbly, is tender but the fat has enlarged to such a great extent that it has completely covered the knee; the pad of fat below the knee has engulfed the entire lower leg and the surface of the skin has large divots, lobules and a bubble-like appearance in some areas.

Fa l l 2 0 1 6

Cellulitis

aculeatus) and quercetin14 also stimulate the SNS pathway15 increasing lymphatic pumping, as well as venous tone. 16 nV ascular system anti-inflammatories: Certain plant-derived compounds have anti-inflammatory properties that maintain the integrity of veins and lymphatics in women with lipedema including L-arinine, an amino acid that reduces lymphatic vessel leakage 17, Pycnogenol (French maritime pine bark extract) that improves venous insufficiency and tone,18 and beta aescin from horse chestnut seeds and other seeds.19, 20 Anti-inflammatory products reduce pain and SAT fluid in lipedema, but there is need for formal testing. nS elenium: A mineral that inhibits matrix metalloproteinases, enzymes important in lymphatic vessel remodeling and damage,21, 22 selenium is recommended for excess fluid in lymphedema and lipedema. The maximum safe daily intake for selenium is 600 mcg daily (US National Research Council)23, 24 or three Brazil nuts daily. Blood levels can be checked as high levels of selenium have been associated with diabetes.25 nM etformin: Women with lipedema who develop signs or symptoms of metabolic dysfunction should consider metformin treatment to improve inflammation,26 reduce weight, improve gut bacteria,27 and support longevity.28 n W hole Body Vibration (WBV): During WBV, vibrations and oscillations excite stretch receptors, tendon reflexes and muscle contraction. WBV improves blood circulation and increases lymphatic flow, lessening the risk for edema formation in the legs which may be important in lipedema.29 Ly m p h e d e m a p a t h w a y s . c a 7

TABLE 4

Signs and Symptoms of Lipedema Signs • Unexplained weight gain – often rapid • Symmetric SAT deposits on left and right side of body • Disproportion of SAT on lower > upper body • Fat unaffected by diet or exercise • Lower skin temperature (hypothermia) in some areas • Pain and tenderness to touch over affected areas of SAT • Varicose veins • Blood clot especially in later stage • Pitting edema especially Stage 4 but also heaviness (lymphedema) of other areas of the body: thighs, hips, buttocks, upper arms

Symptoms • Muscle/joint aches • Easy bruising • Palpitations • Flu-like symptoms • Sleep deprivation (due to pain) • End of day leg heaviness • Stress, fatigue and anxiety • Reduced cognitive/concentration • Numbness (greater in Stage 3>2, 1) • Shortness of breath (Stage 3>2, 1)

SAT = subcutaneous adipose tissue

These can vary per patient and can be affected by stage 1, 3, 4 and season (i.e.: worse during warmer weather.)

Imaging nL ymphangioscintigraphy (LAS): Whole body LAS is first-line imaging for visualization of lymphatic vasculature and flow in lipedema. Lymph transport through lymphatics can be normal,30 but lipedema SAT causes lymphatics to become tortuous and they can leak.

Clinical phenotyping and correlation with LAS is needed to understand the impact of lipedema on the lymphatic system. nD ual Energy X-ray Absorpitometry (DEXA) scans: DEXA scans provide bone mineral density, but additional software allows assessment of fat and muscle of the whole body; in women with lipedema, higher amounts of fat are noted in the gynoid region.31

nM agnetic

Resonance Imaging (MRI): MRI in Stage 3 lipedema demonstrates circumferential enlargement of fibrotic SAT lobules as well as microaneurysms in lymphatic vessels.32 n I ndirect lymphography: Indirect lymphography demonstrates over-extensibility of lipedema SAT and normal lymph collectors.33 Surgical treatment of lipedema Liposuction of lipedema SAT has been performed in Europe since the 1990s, resulting in significant improvement of quality of life. Indications for liposuction in lipedema include loss of mobility, reduced quality of life, joint damage, altered gait, chronic pain, and failure of conservative therapy to improvement signs and symptoms associated with lipedema. During power-

14801 Linotrade annonce 1/4 horiz._horizontal 12-10-25 2:09 PM Page 1

assisted liposuction, tumescing SAT with saline, analgesia (e.g., lidocaine) and buffer firms up the turgor of the tissue to allow tiny, rapid vibrations of the microcannulae to break up adipocytes, which are suctioned out of the tissue. Water jet assisted liposuction (WAL) uses strong sprays of saline and analgesia to knock off fat for suction into microcannulae.34 Laser assisted liposuction is reserved for fibrotic tissue. Liposuction can be performed on circumferential areas, or in sections. An average of 2-3 surgeries depending on the stage, are used to treat lipedema. Patients who are awake during liposuction can change their position to assist in the procedure.

Some patients and physicians choose twilight sedation which can decrease spontaneous activity of the lymphatic vessels,35 or general anesthesia which slows lymphatic pumping and prolongs recovery.36 Some women note growth of SAT on the abdomen, breast, chest or arms after liposuction of lipedema SAT, which needs to be studied further.

Conclusion Lipedema is a common SAT disorder in women causing pain, altered shape, impaired mobility and reduced quality of life. Medications and supplements can temper symptoms and liposuction can reduce the amount of SAT, but the long-term consequences of any of these treatments for women in Canada or the US are not known. Studies are needed for all aspects of lipedema care and to better understand this lifestyle resistant SAT disorder. LP A full set of references can be found online at www.lymphedemapathways.ca.

www.lympholino.com

Your One-Stop Supplier of Lymphedema Bandages and Compression Garments • Full-line Distributor of BSN including Artiflex, Comprilan, JOBST Ready-To-Wear Garments • Full-line Distributor of LOHMANN & RAUSCHER including Komprex, Mollelast, Rosidal K, Tg • Full-line Distributor of 3M including Coban • Compression Bras from WEAREASE We ship across Canada

Please email your enquiries to linotrade@aol.com or call (514) 846-1280 #2 8 Ly m p h e d e m a p a t h w a y s . c a

Fa l l 2 0 1 6

J

Juzo Print Series Be well. Be free. Be you.

The new Juzo Prints Series compression arm sleeves and gauntlets let your patients move freely while making a statement.

see back for details

For more information: www.juzo.ca/prints or call 844-229-4999.

Conference Review

2016 Asia Pacific Lymphology Conference New Networks, New Solutions An international collaboration Professor Neil Piller

By Katherine Styrchak and Robert Harris

Wow! What an incredible experience! While my co-author, Robert, travels much more extensively and rubs shoulders more frequently with the “rock stars” of the lymphedema world, I only occasionally get to venture outside my four walls and beyond online conversations to actually meet these approachable hotshots.

The International Lymphoedema Framework (ILF) and the Australasian Lymphoedema Association (ALA) held a joint conference in Darwin, Australia, May 25 – 28, 2016.

The conference opened with a “Welcome to Country” address by Billaware Lee, elder of the indigenous, Larrakia Nation who are the traditional custodians of the land. Ms. Lee led the Indigenous medical program at Flinders University and now at Charles Darwin University. She explained how the societal trauma undergone by aboriginal peoples has led to so many chronic diseases and of the need to work holistically to recover spiritual health. This was followed by a dance performance from an indigenous group.

Professor Neil Piller (Australia) and Professor Christine Moffatt (England) gave a welcome address from the ILF, outlining the organization’s key objectives and discussing the power of partnerships; clinicians, academics and industry. the power of partnerships, clinicians, academics and industry. The conference was then officially opened by Katrina Fong Lim, Lord Mayor of Darwin.

The John Casley Smith (1936 – 1997) Keynote Address was given by Professor Marlys Witte (Arizona) who honoured the more than 400 scientific papers, books, films and lectures given by Professor CasleySmith over his lifetime of work with the lymphatic system and lymphedema. Professor Witte described how lymphatics participate in similar pathologic processes, as do blood vessels. Genetic discoveries were highlighted with 10 genetic abnormalities now known to be associated with primary lymphedema.

Multimodal management options were discussed in relation to what is wrong with the patient (phenotyping), what gene defect is responsible (genotyping), and what treatment option is available (translation).

She imagined future technology where we can personally monitor our lymphatic system.

Jean-Paul Belgrado (Belgium) presented on deep infrared imaging to identify venous impairment after breast cancer surgery.

He asked why some patients who undergo axillary lymph node dissection develop lymphedema and others not. Level II and

Robert Harris, RMT, HND is the founder of the Dr. Vodder School International, based in Victoria, BC. He has been a certified MLD/CDT therapist for 32 years and instructor for the past 29 years.

Katherine Styrchak, RMT, CLT-LANA is a registered massage therapist and certified lymphedema therapist who treats patients both at the Winnipeg Regional Health Authority’s Breast Health Centre and in private practise.

Both Robert and Katherine graciously volunteer their time with the Canadian Lymphedema Framework.

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

III nodes are dissected close to the axillary vein. Sometimes the vein is impacted during surgery and this may contribute to lymphedema. Changes in the wall thickness of the axillary and cephalic veins were noted.

Jean-Paul Belgrado During axillary node removal, fatty tissue around the axillary vein is also removed and the local biomechanics and haemodynamics are altered. Increased filtration resulting from altered pressure in the axillary vein may increase lymphedema in the arm. He described an axillary vein compression test that is positive in such patients. New vein collaterals may form which can be identified with deep infrared thermography. In his own studies, Dr. Belgrado stated that 64% of patients with BCRL showed a significant temperature change on the affected thorax side. By undergoing a technique called “lipofilling” in the axilla this problem at the axillary vein can be corrected.

Dr. Karen Herbst (Arizona) discussed lipedema and various Subcutaneous Adipose Tissue (SAT) disorders, describing similarities Fa l l 2 0 1 6

and differences in lipodystrophy, lipedema, Dercum’s disease, Madelung’s disease and Familial Multiple Lipomatosis (FML), of which there are no gene biomarkers. Lipedema can appear like lipodystrophy however lipedema is edema in the SAT where capillaries and veins are leaky, lymphatics are sluggish and inflammation occurs. It can be accompanied by pain but not always. Dr. Herbst described the three stages of lipedema related to severity and also the different types which relate to localisation. Dercum’s disease is a painful fatty growth in subcutaneous tissue. It is a vascular disorder and once fat has developed, it is very difficult to reduce fat. Manual Lymph Drainage (MLD) can improve the signs and symptoms of Dercum’s disease, reducing pain. Patients exhibit memory loss, fatigue, pain for at least three months, tender benign fat tumours (lipomas), vascular involvement and other symptoms. Lymphedema is not uncommon in Dercum’s disease as well as autoimmune disorders. There may be a link between fibromyalgia and Dercum’s disease as well as a higher incidence of diabetes.

Madelung’s disease is a rare syndrome, which is a symmetrical, abnormal, tumour-like fat deposition in SAT. It is usually painless. There are three types: Type I usually occurring around the neck, Type 2 usually in women and appearing on the back, Type 3 which presents more like a lipedema. The supra pubic area can also accumulate fat. It can be accompanied by polyneuropathy and is more common in men.

Professor Christine Moffatt (England), co-chair of the ILF explained the LIMPRINT international epidemiology project. She described the silent epidemic of chronic edema occurring among the increasing numbers of elderly, obese, immobile patients, patients with associated conditions and cancer survivors. In Europe, chronic edema requires 9% of people to stop work and costs 4.4 billion euros in loss of earnings and 832 million euros in annual costs to the health and social welfare systems. There is a lack of international data and many challenges surrounding the collection of data on patients. The goal of LIMPRINT is to create an international prevalence study of chronic edema, using common methodology and to date, over 10,000 patients have been entered Fa l l 2 0 1 6

Professor Marlys Witte

Professor Christine Moffatt

Organizing committee members, left to right: Shirley Preston (Convener), Anna Kennedy, Deborah Hurt, Margaret Sneddon, Professor Neil Piller and Dr. Helen Mackie. into the project. In a later session, specific study results were shared by some of the LIMPRINT team participants. Canada is now starting to participate in the project.

Dr. Isabelle Quéré (France), vascular medicine specialist from Montpellier, presented on the Marilyn Trial to assess the safety and efficacy of the auto-adjustable Mobiderm arm sleeve.

They performed a pilot study with 40 patients where Decongestive Lymphatic Therapy (DLT) achieved a 31% reduction, but during the maintenance phase, a 16.5% return of volume occurred (rebound effect). The study used an easily adjustable night-time garment. Of the 40 patients involved, 20 were randomized to wear daytime and nighttime compression and 20 patients wore daytime compression only. In the study, patients wearing nighttime compression had a better maintenance reduction and prevention of the rebound effect.

Dr. Vaughan Keeley, (England) Dr. Quéré, Johanna Newsom PT (Sydney, Australia) and Jane Phillips PT (Melbourne, Australia)

chaired a panel session on children and young adults with lymphedema. The interactive session focused on outcome goals for patients and families, footwear and clothing challenges. Options were discussed for finding compression that works and the use of appropriate bandages and garments.

Dr. Keeley led discussions on genetics and lymphedema and how parents’ questions can be answered. The ILF hopes to develop a consensus document on pediatric lymphedema for further publication.

Anna Kennedy (Toronto, Canada) presented “Empowering patients and health professionals -The collaboration to launch a unique national lymphedema magazine.”

Australian delegates were amazed at how Pathways, a printed magazine was so well received and some who had been thinking of going digital-only were re-thinking that decision after Anna’s presentation.

Congratulations, Anna, on winning “Best Oral Presentation from outside of Australia/NZ!” You’ve made a positive impact internationally!

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

The second morning started with Keynote Speaker Professor Terence Ryan, a dermatologist and professor at Oxford University (UK) who discussed the importance of skin care and showed amazing results in lymphedematous limbs in Ethiopia with just proper, consistent skin care.

Indocyanine Green (ICG), which then binds with lipoproteins, and is seen under an infrared camera as it makes its way through the lymphatic vessels. This technology is a research tool for mapping lymphatics, so unfortunately not currently available to the majority of lymphatic practitioners.

Jane Turner, PhD, (Queensland, Australia) discussed communication challenges when caring for patients with lymphedema. She included examples of defense mechanisms often used by patients and constructive responses for responding to these challenges.

Friday afternoon’s Surgical Management session was very informative. Presentations included “Liposuction for the management of chronic lymphedema: measuring improved quality of life using the lyqli questionnaire” by Helen Wohlgemut (Scotland); “Prediction of surgical treatment outcomes with bioelectrical impedance analysis in acquired extremity lymphedema patients”, by Xiao Long (China); “Liposuction for lower limb lymphedema improves gait biomechanics”, by Alex Munnoch (Scotland); “Outcomes after Lymph Node Transfer (LNT) for lymphedema – 12 month follow-up”, by Quan Ngo (Australia).

Another session discussed Impact of lymphoedema: “Does lymphoedema severity affect overall quality of life?” presented by Teresa Lee and reported that patients living with lymphoedema report a moderate to high quality of life, regardless of the severity of their lymphedema, and “Worse and worse off: the impact of lymphoedema on women’s work, career and financial status”, presented by Louise Koelmeyer, who identified the severity of financial impact suffered by women after a breast cancer diagnosis and then a lymphoedema diagnosis.

The first afternoon Plenary Session was by Natasha Harvey, (South Australia) “From genes to mechanisms: how the identification of mutations underlying human lymphedema informs our understanding of lymphatic vessel biology” which discussed research on mutations in the GATA2 gene. GATA2 is crucial for the growth and development of lymphatic vessels, and particularly the lymphatic vessel valves. She concluded by saying that understanding the genetic basis of lymphedema and the cellular events in building functional lymphatic pathways will lead researchers to develop targeted therapeutics able to treat lymphedema.

The second Plenary Session was a live-demonstration by Jean-Paul Belgrado (Belgium), on “Near-infrared fluorescence lymphatic imaging”, where he explained the difference between the imaging he’d presented the day before and the imaging he was going to demonstrate on a willing volunteer.

His assistant was injected intradermal with 12 L y m p h e d e m a p a t h w a y s . c a

The main messages that this therapist took away were: 1) surgery for lipedema, an under diagnosed and poorly-understood disease in Canada, is an option that patients are asking for; 2) bioelectric impedance analysis is a useful tool in predicting surgical outcomes in secondary (limb) lymphedema patients; 3) surgery is an option in some cases of lymphedema and lipedema. The type of surgery, the criteria for choosing an appropriate surgical candidate, the expectations of the outcome of the surgery and the long-term effects are as individual as the surgeon and the patient, and a “Best Practices” consensus amongst surgeons doesn’t yet exist on the afore-mentioned variables. Surgeons agree that surgery is not a cure for lymphedema and lipedema, as compression must be worn forever post-surgery, and they are close to agreeing on which variables and combinations of variables are the least desirable.

Saturday began with a Plenary Session by Karen Herbst discussing “Lipedema and treatment options.” One important comment she made was that lipedema is not necessarily progressive and a Stage II lipedema can stay at Stage II forever. She discussed treatment modalities including manual therapies,

lymphatic vessel sparing liposuction, medications, diets and supplements.

The afternoon plenary was filled with talks of fat transfers and genetics, as presented by Ramin Shayan (Australia) in “An imagingbased algorithm for the management of lymphedema in the Australian setting.”

Information to digest: perhaps the future of lymphedema treatment will be fat transfers as opposed to liposuction and VEGFD causes sprouting of new lymphatics.

The Hot Topic: “Is MLD still relevant?” raised some interesting points, even though there was for the most part, consensus amongst the debaters. While some European countries are no longer including MLD in their treatment for lymphedema, the tropical countries, as explained by Hozaidah Hosain (Singapore) use MLD extensively because compression garments are difficult to don and wear continuously in the heat and humidity.

The last Plenary Session was presented by Marlys Witte (Arizona) with “Overview of hereditary lymphedema syndromes.” She discussed several case studies of families affected with primary lymphedema caused by genetic mutations. She commented that “patients with rare diseases are often marginalized because they reveal our ignorance: we can’t answer their questions. But it is the study of rare diseases that may lead to a better understanding of common diseases,” and maybe, a few answered questions.

What an informative conference! There is so much going on in so many domains: diagnosis, treatment, measurment, exercise rehabilitation, genetics research, treatment strategies, surgeries, skin care, psychosocial health, and more! The announcement was made that the next ILF conference will be held in Italy in 2017. LP Editor’s Note: This review focused primarily on the plenary sessions. View the full conference program and list of abstracts at www.2016asiapacificlymphology conference.com.

Fa l l 2 0 1 6

LYMPHEDEMA Your Best Choice for Lymphedema Care At Shoppers Home Health CareÂŽ, 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 DEER 5250 22nd Street, Unit 70C (403) 342-4460

TORONTO Lawrence Plaza 528 Lawrence Avenue West (416) 789-3368

MISSISSAUGA Applewood Village 1077 North Service Road (905) 281-0166

CALGARY/SOUTH 180-94 Avenue South East Unit 25A (403) 255-2288

SCARBOROUGH 685 McCowan Road (416) 431-4621

ST. CATHARINES Lake Carlton Plaza 145 Carlton Street (905) 641-5200

Leading the way to healthier, independent lifestyles.

www.shoppershomehealthcare.ca

Clinical Perspective

Taking care of your lower limbs

Precautionary measures for lymphatic patients Putting your best foot forward

By Gurdish Sandhu

M

any people are unaware of how hard their feet work for them until their independence is compromised. Each foot contains: 26 bones, 33 joints, and more than 100 muscles, tendons, ligaments, and nerves. Edema, neuropathy, infections, and circulatory disorders, like venous stasis and arteriosclerosis, are just some of the many ways in which the health of your feet and lower extremities could be compromised.

Taking some time to care for your feet will maintain them and work to prevent long term injury so you can put ‘your best foot forward.’ Patients with lymphedema, diabetes, and peripheral and cardiovascular disorders should take extra precaution for optimal health and healing.

Basic care Skin is the first line of defense against trauma, infections, and temperature fluctuation.1 Therefore, the best way to care for your feet is to inspect them daily for cracks, cuts, dry patches, hangnails, and fissures. It is important to note that patients should make an effort to keep the skin between their toes dry after daily baths or showers, with mild soap and water, and to check underneath their feet with a mirror for any injuries. If additional aid is needed, patients can seek help from their families to do their daily checks. Basic care entails the following: 1 Soak feet once a week in an acetic acid (eg. apple cider vinegar) and water solution. A dilution of at least 1:5 is

Gurdish Sandhu ORLPN, FCN is a perioperative nurse at St. Paul’s Hospital, and False Creek Surgical Center with over 22 years of experience working with Providence Health Care. Gurdish is also a Canadian Foot Care Nurse and owner of Vancouver Medical Footcare.

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

recommended, with the water at room temperature. People with neuropathy should test the water with a thermometer.

Soaking should be no longer than five minutes. If soaking the feet cannot be tolerated for any reason, spray feet instead using a spray bottle and wait for five minutes before wiping dry.

2 Feet should be thoroughly dried afterward, especially between the toes.

A clean dry washcloth is useful for this purpose. People with papillomatosis of the feet should ensure that all the cracks and crevices are dried. A hair dryer on low setting may be needed.

3 Moisturize feet with low pH emollients to keep feet supple. Do not put any emollients between toes as warm, dark, and moist environments encourage bacterial and fungal growth. Be sure to wipe away any excess emollients left on the feet.

4 Cut toenails across, following the contour of the nail, and filing the corners to prevent ingrown nails.2 To sanitize, boil Fa l l 2 0 1 6

the clippers for at least one minute and allow them to dry for one hour before reuse, to prevent cross-contamination between family members or possible reinfection of oneself. Hydrogen peroxide (6%) is also a high level disinfectant that is quite economical to use.3 5 Once feet are cleaned, dry and moisturized, wear clean breathable socks or prescribed compression garments.

It is imperative to change socks and garments daily. Avoid socks and garments with holes, repairs, or darnings; these can cause pressure zones on your foot that lead to dermal breakdown. Ensure the seams are not rough or irritating, and check both garments and socks and shoes for foreign objects before wearing.4 Thick socks of natural fiber are recommended to help absorb pressure and wick away moisture.5 6 See your doctor if you suspect a fungal infection or notice redness, blisters, itchy dry skin, or peeling. Early detection means early treatment.

Garments and the importance should opt for open toed versions to allow of shoe fittings for greater breathability when purchasing Swelling is a common symptom for compression stockings.7 Bandaging and patients dealing with lymphedema. To support garments should be reassessed ease the discomfort of swelling, the easiest routinely as sizing adjustments maximize remedy is to elevate the patient’s feet. effectiveness and decrease the potential Sitting or standing for extended for injury. periods of time also intensifies Determining a proper fit for shoes swelling in lower extremities; can be broken down into four therefore, the best course aspects: support, warmth, Avoid socks of action is to promote breathability, and good and garments circulation by walking soles. Shoes should be or moving around. If purchased in the evening with holes, walking is restricted, while patients are wearing repairs, or circulation can be their prescribed compression darnings. improved by doing one of garment. Purchasing shoes in the following actions: plantar the evening ensures a proper fit and dorsiflexing,6 or curling and as feet often swell to their maximum uncurling your toes; stretching; and/ by this time of day. Shoes should not or rolling a foam ball under feet. pinch or feel tight. Patients should have Avoid wearing tight fitting garments shoes measured by a professional pedorthist unless prescribed, measured, and fitted by each time they buy. These professionals a professional to ensure a proper fit and can assist with shoe selection according to prevent nerve damage. Unless otherwise need and minimize pain associated with recommended by a practitioner, patients deformities, age related changes, and joint

We are pleased to announce that BiaCare is joining the SIGVARIS family.

LYMPHEDEMA

COMPRESSION WEAR

WOUND CARE COMPRESSION WEAR

BANDAGES & T H E R A PY S U P P L I E S

800.363.4999 sigvaris.ca

Fa l l 2 0 1 6

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

Lotions are primarily water based and as such are often drying to the skin. Emollients are preferred. They should be non-scented and free of sensitizing agents. They will contain some oil based components which are necessary to preserve the barrier function of the skin. They will not clog pores if applied correctly, very thinly.

inflammation. The insoles can be custommade for proper arch support and ultimate comfort. Patients with orthotic insoles should bring them to shoe fittings. Having corns, calluses, and gryphotic (thickened) nails reduced will help with comfort and fitting.

However, the consistent use of adhesive tapes and medicated corn pads should be avoided as they can cause chemical burns in compromised individuals, especially those with neuropathy. While trying shoes on, patients should size the shoes for the larger foot by standing up to ensure that there is roughly ½ an inch between their big toe and the end of the shoe and that the heel is snug but not tight.8 Wearing shoes with a proper fit with breathability will allow for good air circulation and prevent calluses caused by repeated rubbing and friction.

Caring for footwear is an important part of maintaining optimal foot health. To disinfect, patients should spray footwear with Lysol once a week. If the shoes get wet, insoles should be pulled out and the rest of the shoe should be stuffed with either paper towels or newspapers to help absorb moisture.

Furthermore, alternating footwear allows for complete drying and ventilation between uses.

Nutrition Maintaining the overall well-being of a patient through a diet full of nutrition also improves the health of lower extremities. Enriching the health of an individual starts with a balanced diet and a good multivitamin. Most often, attaining a nutrient-loaded, well balanced diet means increasing the intake of a colourful variety of fruits and vegetables. Patients suffering from swelling would do well to incorporate anti-inflammatory foods such as: tomatoes, lemons, ginger, olive oil, leafy green 16 L y m p h e d e m a p a t h w a y s . c a

vegetables like spinach and collards, nuts, fatty fishes, broccoli, celery, and fruits like strawberries, blueberries, cherries, oranges, and pineapples. Anti-inflammatory foods assist in maintaining good circulation by preventing the engorgement of vessels.

A diet that lacks proper iron nutrient leads to anemia, which in turn can cause numbness, tingling, nerve pain and separation of the nail plate from its bed in patients’ feet.

If the patient is a diabetic, good control of blood sugar levels will decrease the onset of neuropathy. Neuropathy, lymphedema, peripheral vascular and cardio vascular issues all decrease the patient’s ability to feel hot temperatures.9 Therefore it is not recommended that patients suffering from these illnesses use heating pads, hot water bottles, and chemical thermal warmers because they may not feel when blisters and burns occur.10 If patients smoke or drink alcohol, the limitation or removal of these substances from their lifestyle would greatly improve overall well-being. Smoking contributes to the gradual occlusion of arteries over time from plaque buildup, called arteriosclerosis, which leads to vascular constriction and poor circulation.

Alcohol can cause dehydration, which leads to dry skin and a reduced ability to heal.

Exercise combined with good nutrition is essential in maintaining good health in patients. Exercise will help to keep weight in check, as well as increase the uptake and absorption of a nutrient-loaded diet. The best kind of exercise, to keep muscles and tendons of lower extremities healthy, is regular lowimpact exercises such as walking, stretching, swimming, and bicycling.11

In conclusion With aging and health related issues, proper care of lower extremities is essential as good quality care of feet decreases the risk of developing complications which can lead to disability, ulcers, amputation, chronic pain, and even death. Patients should seek out professional treatment from podiatrists or local foot care nurses if vision or mobility hinders them from routine basic care procedures. All individuals should remember to visit their family doctor routinely, as they effectively manage your overall care and coordinate your health care team. Good communication between you and your health care practitioners will help optimize the best care possible to take care of your lower limbs. LP

Help and assessment Mild injuries can lead to dangerous infections.

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

Individuals should monitor their feet for signs and symptoms of infection including, but not limited to, redness, warmth, swellings, and/ or pain. It is imperative that patients see their doctors if they suspect an infection or notice an injury that does not heal within a couple of days. Other symptoms to report to a health care practitioner are burning and tingling sensations, blisters, calluses, foot pain at night, and cramping in lower limbs.

A physician will look into a patient’s medical history and lifestyle, review medications, and provide a physical exam. This physical exam will assess severity of pain, pedal pulses, nerve sensitivity, and level of edema present. With proper assessment, doctors can recommend tests, and provide patients with suggestions for a treatment plan tailored to a patient’s specific needs.

Fa l l 2 0 1 6

Celebra te Sea ml ess

No seams here

or here!

or here

Manage your lymphedema with style, grace and confidence! LympheDIVAs seamless arm sleeves, gauntlets and gloves are fashionable, comfor table, breathable and designed to provide the standard graduated 20-30mmHg and 30-40mmHg compression used to manage lymphedema.

In a world of beige, we of fer color, cr ystals and a vast selection of patterns. Our garments are not only beautiful but they feel great too! Each garment is knit with 360° stretch, infused with Aloe vera and is moisture wicking for true comfor t & fit. Don’t compromise your style, take control of your lymphedema today!

L Y M P H E D I VA S . C O M

Ask the Expert

Approaching your doctor Tips on discussing lymphedema with your health care providers

By Anna Towers

Q

I have had gynecological cancer treatment and now have lymphedema of both legs. My surgeon referred me for stockings to the knee, which I couldn’t wear. I found out later that it was the wrong prescription. Also, I learned that she should have referred me for bandaging beforehand because my swelling was very “pitting.” She looks like she is trying her best but why don’t oncologists know more about lymphedema treatment and how to prescribe or refer?

A

Although the situation is improving, oncologists and physicians in general receive no formal training in lymphedema management. There are few, if any, medical schools that offer oncology residents even a half-day of systematic clinic experience in lymphedema assessment and care.

There are very few specialized academic lymphedema clinics in which to base this teaching. However, within the next few years we should see considerable improvement in this area. In the meantime, sometimes it is patients that have to educate their oncologists!

Q

What should I say to my oncologist? I don’t want to seem ungrateful or make waves…

A

Late referral for lymphedema is a common problem. Many oncologists still think that mild swelling is “OK” and nothing

to be concerned about. So, the first message should be: patients need to know about prevention and should be referred to a knowledgeable lymphedema therapist at the first signs of swelling.

This would ensure that the therapy is done according to established international standards of care (www.lympho.org), including: compression bandaging to reduce significant pitting edema; the prescription of flat-knit, thigh-high stockings where required (in the case of surgery and/or radiotherapy leading to lymphedema of the lower extremities); lifestyle and exercise advice, as well as other therapy modalities that might be indicated such as MLD and/ or training in self-lymphatic massage.

I did eventually link up with a certified lymphedema therapist who taught me bandaging and other things that I could do. I now have stockings that work better. But I did have to invest a few thousand dollars to get to this point! And I have to continue to spend money! What could I do to try to improve things for other people facing this problem, as well as for myself?

complication that needs to be looked after properly, according to best practice guidelines, under Medicare as much as possible, just as all other aspects of cancer care. We are, after all, in a highly developed country! We should be able to take pride in all aspects of oncology care, including rehabilitation issues. Sometimes patients need to complain and advocate. In my experience, institutions and Ministries of Health listen to patients a lot more than they listen to lymphedema experts.

You can also speak with oncology nurses and physiotherapists. If your cancer centre has no Medicare-funded lymphedema service as well as a rehabilitation program, write a letter of complaint to the director of the cancer centre and to your provincial or territorial Minister of Health. You might need to include photos of your lymphedema, compression devices and expense receipts if appropriate. In this way you will be doing a lot to promote development of lymphedema services in your community and beyond!

A

Q

Q

I encourage patients to speak with their oncologists and family physicians about their successes, failures and any reimbursement or financial issues that they face. If your cancer centre does not have a lymphedema service, ask your oncologists why not. Cancer-related lymphedema is a

Active within the CLF since its founding in 2009, Dr. Anna Towers is a palliative care physician and Associate Professor in the Department of Oncology, McGill University. She trained in lymphedema management in Australia under Drs. John and Judith Casley-Smith and since 1995 has run an academic lymphedema program at the McGill University Health Centre. She also teaches in the Vodder School.

I feel uncomfortable writing letters like that. Where can I get help with that kind of advocating?

I really don’t want to upset my oncologists.

A

There is information on the website of the Canadian Lymphedema Framework that you may find useful. However, the best resource would be your provincial Lymphedema Association. Do join them and speak with the volunteers there. They are there to help advocate as well as to provide you with support.

LP

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

Fa l l 2 0 1 6

SAVE

Treatment Approaches

If you can breathe, you can do yoga

For secondary arm lymphedema

A custom approach to yoga that benefits lymphedema patients

By Alexandra Fabbi

“A

nd now we’ll prepare for savasana, our relaxation pose, using our cushions to elevate our affected arms”, I say to the group of eight women on yoga mats, all with secondary arm lymphedema, and all enrolled in the “Yoga for Secondary Arm Lymphedema” workshop at the Hearth Place Cancer Support Centre in Oshawa. As I fold up my special yoga shirt, which has my drawing of the lymphatic system all over it, I wonder: How did I end up as a yoga teacher, let alone a yoga teacher specializing in secondary arm lymphedema? Ten years ago I hadn’t even heard of lymphedema, let alone the equally esoteric Sanskrit term “savasana”.

My quest for lymphedema information began in 2008. Daily exercise was the universally recommended route to managing my secondary arm lymphedema- but what kind of exercise, especially since I’d much rather sit down with a cup of tea and a book than do any kind of exercise at all?

At that time, lymphedema knowledge was thin on the ground in Canada. I pored over

reputable international medical research sites on the internet. Excellent exercise protocols for lymphedema were certainly out there: those created by John and Judith CasleySmith, Dorit Tidhar, Sheri Lebed and Elaine Hanson to name only a few. Common themes arose: deep diaphragmatic breathing, gentle stretching, and exercises done in a specific order to clear the lymphatic system using the principles of Manual Lymphatic Drainage espoused by Dr. Emil Vodder and others.

There is an old adage “instead of digging many shallow wells, dig one deep well.” As happy as I would have been to avoid exercising by continuing my research indefinitely, in the interests of time I had to make a choice or exercise would never become part of my daily routine. But which exercise?

Serendipity struck. One day, waiting for a new compression sleeve to be rung up at the cash register, I spied a dog-eared publication-“Where the Rivers Meet the Sea” by physiotherapists Sharon Langfield

Alexandra Fabbi, BSc, RYT-200 currently offers her “Yoga for Secondary Arm Lymphedema” workshop at Hearth Place Cancer Support Centre in Oshawa (www.hearthplace.org). Her next area of interest is yoga practices for leg lymphedema.

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

and Janet MacFarland-on the fitter’s desk.

Forty-five minutes later, I had devoured the whole book. Langfield and MacFarland not only endorsed the same exercise principles as all of the other protocols I’d found, but had added a holistic element with visualizations, breathing with awareness, and meditation.

And I knew from my reading of neuroscience and neuroplasticity that Western medicine was beginning to endorse just these practices for their healing effects in both the body and the mind.

Deep breathing with awareness, gentle postures, meditation- sounds a lot like…yoga?

Was yoga my lymphedema exercise? But how could I do yoga? I wasn’t flexible, I couldn’t stand on my head, and anyway, what about the secondary arm lymphedema? It was worth a try. From the start, I was drawn to the gentle, cumulative, yet powerful physical and mental benefits of Hatha yoga. Before long I was in love with the practice of yoga, the peace and calm it conferred, and its gifts of almost imperceptibly acquired strength and stamina. Whatever happened in my life, I could find solace and peace on the yoga mat. But even in gentle yoga classes, some of the poses made my arm swell, and Fa l l 2 0 1 6

undid hours of lymphedema treatment.

So next I tried yoga offerings advertised as “Lymphatic Yoga”--surely better yoga for lymphedema? Well, lymphatic yoga is wonderful for unimpaired lymphatic systems, but I discovered the hard way that lymphatic yoga sequences-like all yoga sequences- may need modifications to accommodate the impaired lymphatic systems associated with lymphedema. Otherwise, doing un-modified yoga with lymphedema can be like turning the taps on when the pipes are broken, except much harder to mop up after!

There was no way I’d give up yoga now, I’d already invested in a chic pair of yoga pants! I just needed to learn how to modify yoga poses for my secondary arm lymphedema.

The question was: how? After a lengthy hunt, I still couldn’t find a yoga teacher or yoga therapist who knew what to do for lymphedema, or in most cases, even knew what lymphedema was.

The more I researched, the more convinced I became that it was worth the time and expense to get certified as a yoga teacher and teach myself how to modify yoga poses for secondary arm lymphedema. After all, each manual lymph drainage massage was already costing me a two hour roundtrip drive, an hour on the table, and $80 weekly, and hadn’t researchers1 already demonstrated the significant benefits of daily yoga practice on leg lymphedema in Kerala, India, where the population didn’t even have access to the compression garments and MLD treatments I used regularly?

The lovely, inspiring and uniquely talented yoga teacher and studio owner Jacqueline O’Brien of Uxbridge encouraged me to join her 200-hour Hatha yoga teacher training course. Her philosophy is that yoga is for everybody- and every body- given the correct use of props, modifications with gentle and gradual progression into each yoga pose, constant vigilance, and as Jackie would phrase it “being kind and compassionate to yourself.” My final research project for teacher certification was, of course, “Yoga for Secondary Arm Lymphedema.” The more I delved into the ancient practices of yoga postures, breathing, and meditation, the more I discovered reflections therein Fa l l 2 0 1 6

of several alternative healing modalities for lymphedema. And I was delighted to find that every one of the lymphedema exercise protocols I had studied initially had their counterparts in yoga postures. It wasn’t much of a stretch for me to wonder: had anyone ever thought of creating a yoga sequence specifically for secondary arm lymphedema that also used the principles of manual lymphatic drainage?

Happily, more research revealed the

answer was yes. Australian Annette Loudon had not only thought of creating a yoga sequence specifically for secondary arm lymphedema, she had conducted a clinical trial2 on the subject to earn her Masters degree in Medical Science, demonstrating that her yoga sequence not only alleviated symptoms of lymphedema, but had unanticipated positive effects on quality of life issues as well. Thus began my deeply rewarding association with Annette, who was

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

and is incredibly generous about sharing her knowledge and time: answering my endless questions, even sending me recordings of her yoga classes, and ultimately formally becoming my teacher via her rigorous on-line courses for “Yoga for the Lymph System and Lymphoedema”. It was only much later that I learned “Annette-the-researcher” was also the President of the Australasian Association of Yoga Therapists, with a long string of degrees and accreditations to her name.

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

Newly armed with a suitable-for-framing Hatha yoga teaching certificate and hardearned knowledge of how to modify typical yoga postures for my secondary arm lymphedema, at last I could safely attend the “regular” yoga classes near my home in Uxbridge, as well as enjoying Annette Loudon’s expertly crafted and research-based yoga sequence privately at home.

My yoga for secondary arm lymphedema practice would probably have remained a private and solitary habit, but for a chance meeting with Maureen Riddell during a break at the 2013 National Lymphedema Conference in Toronto. As we sipped our coffee, Maureen described the groundbreaking work being done at the Hearth Place Cancer Support Centre in Oshawa to provide support and information for those with lymphedema. After decades of pioneering on this front, Maureen is always ready to investigate any new approach to lymphedema therapy, especially one that is empowering, inexpensive and accessible.

This led to my sharing my yoga practice for

arm lymphedema at Hearth Place: initially with monthly drop-in classes before the lymphedema support group. This evolved into my six-session weekly yoga workshop based on the research of Annette Loudon. The workshop is offered without charge for those with or at risk of secondary arm lymphedema.

In this workshop, students are familiarized with Annette Loudon’s yoga sequence for secondary arm lymphedema and the reasons for each pose. I’ve added instructions on how to modify typical poses found in community based yoga classes to accommodate secondary arm lymphedema, as well as suggestions about incorporating yoga into a daily routine, a few minutes at a time.

No yoga experience is required: if you can breathe, you can do yoga! And as Swami Krishnamacharya was so wise to also add “but not just ANY yoga.” LP References can be found at www.lymphedemapathways.ca.

See page 25 for Canadian research on yoga for breast cancer patients.

Fa l l 2 0 1 6

Patient Perspective

Lymphedema is not me A young girl’s journey to self-esteem with lymphedema Everyone is different and that’s okay

By Isa-Bella Leclair

A

lthough I have had lymphedema since I was born, I’ve only known about it since I was seven years old. The doctors have always told me that it was a secondary effect of Parkes Weber Syndrome, the genetic disease I have that affects the veins and arteries in my right leg.

I have just turned 20 years old and have learned so much about lymphedema in the past two years. My right leg has always been bigger than my left leg, a lot bigger. As a child I noticed that I was different but I never considered it a bad thing. My family was truly amazing and they never made me feel left out.

We were always travelling from one hospital to another and they always made me see how I was the lucky one. How my handicap, although more visible than other diseases, is far less serious than most of them. I could still walk, play, travel, go to school, and live my life mostly outside of hospital walls, a pleasure a lot of sick kids could not enjoy.

And so I lived my life, went to school and made friends. All of the new people I met that noticed my leg were curious about it but as they came to know me, they soon forgot about it, or in other words didn’t care about it. I’m from a small town in northern New Brunswick so it didn’t take long for everyone to know about my leg and they all had the same

reaction: it did not matter to them at all. As long as they knew that I was okay with it, they were okay with it. And so I realized, as soon as I entered kindergarten, that curiosity is normal. People will stare because my leg is different. To accept that was the first step in establishing the self-esteem I’ve been building since I was born. To be kind, respectful and grateful outshines all of the physical characteristics that may define you as different.

When I entered high school I had a close group of friends including my twin sister who, to me, is my absolute best friend and my inspiration every day. She is the same age as me, has the same parents, and was raised in the same house with the same privileges.

So I strived to be like her. I had my limits, physically, but apart from my leg we were one and the same.

It was in high school that I noticed that the people my age were starting to care a lot more about how they looked. The girls started wearing makeup and the boys started going to the gym and some of my friends’ confidence plummeted. They were seeing women in movies and magazines and were thinking that they themselves were not pretty enough,

Isa-Bella Leclair is a 20-year-old Acadian from Northern New Brunswick, studying full time at the University of Ottawa in the hopes of becoming a Civil Engineer. Wrongly diagnosed at birth with Klippel-Trenaunay Syndrome, she was correctly diagnosed with Parkes Weber Syndrome along with primary lymphedema at the age of seven.

She enjoys spending time with friends and family, reading a good book, learning about anything and everything, exploring and eating good healthy vegan food.

Fa l l 2 0 1 6

not skinny enough, never enough. I never saw that because I accepted at a very young age that everyone is different and that is what makes them beautiful, flaws are only flaws if YOU think they are.

Lymphedema is what makes my leg swell up. Because of lymphedema I have had to wear compression garments since I was seven years old. Because of lymphedema I have to sleep with my leg elevated. Because of lymphedema I get a lot of infections that put me in the hospital for weeks. But it is NOT because of lymphedema that sometimes I wish I could wear skinny jeans. It is NOT because of lymphedema that I might sometimes second-guess myself when I am on a crowded beach in a bikini. And it is NOT because of lymphedema that I am seen to a lot of my friends as brave or inspirational. That is because of myself. Lymphedema is not me.

Lymphedema is only a side effect of living. I control what I think; I control how I perceive my value and how I see my body. And you do too. The most important thing I have achieved in life is to understand that all our thoughts come from our mind and we are the only one who can control them. Not the people who judge us, the ones who tell us we’re not pretty enough or the ones who have a problem with us because we’re different. It is you who controls them and the instant you decide to let those thoughts affect you, you have failed yourself.

Lymphedema is not me, and lymphedema is not you either. 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 Stop the sticking Some people find that wearing compression garments under long pants or skirts can cause excessive clinging (where the knit of the compression causes the fabric of your clothes to catch on your garments.) A simple solution to this is to wear thin stockings over top of your compression garments and under your pants or skirt. Not only will this stop the sticking, but it will help disguise the look of your compression stockings.

tube. The best method for applying it is in vertical stripes around the top band on your garment, rather than horizontally or otherwise. Ask your compression fitter about this glue.

of lymphedema in Europe, as well as many countries outside of North America, changes to “lymphoedema”. Pathways readers may wish to add this alternate spelling to their alert preferences. To go one step lymphedema lymphoedema Global news further, adding ‘lymphatic’ to one’s lymphatic Last issue’s Hints & Tips alerts as well will help broaden section made mention the news alerts received about of using Google Alerts to stay lymphedema and lymphatic related abreast of the latest lymphedema disorders from around the world.

Source: Stephen Kelland (Ottawa, ON) news and breakthroughs. The spelling

Adhesive tools If you struggle to keep your compression garments pulled up, there is an adhesive lotion or glue available to help them stick to your skin. The lotion comes in a roll-on

Dr. Vodder School

TM

I N T E R N A T I O N A L M ember of Dr. Vodder Academy I nter national

Train in Canada

with Canadian-based educators (and pay in Canadian dollars!)

Halifax Quebec City Montreal Ottawa Kingston Toronto

Winnipeg Saskatoon Calgary Vancouver Victoria

LP

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

Lymphedema management The most comprehensive 160 hr training.

Problem-solve your challenging patients. ~ Evidence-based ~ Easy learning modules with small class sizes ~ Interactive, live classroom instruction with physicians ~ Learn precise manual skills with expert, accredited instructors ~ Classes available across Canada ~ CE credit available

1 800 522 9862 info@vodderschool.com | www.vodderschool.com

PROFESSIONAL TRAINING IN MANUAL LYMPH DRAINAGE AND COMBINED DECONGESTIVE THERAPY

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

Fa l l 2 0 1 6

Research and Community

Did you know?

Educational Benchmark Standards

New for Pathways

Two new enhancements to the Pathways magazine are now available to enrich the reading experience of its subscribers. A selection of translated articles is available to all French readers across Canada in an online format. This is made possible through a collaboration between the Canadian Lymphedema Framework and the Lymphedema Association of Quebec.

Another great benefit to subscribers is the option to read both the English and French version online, in addition to their printed copy. For more information, visit www.canadalymph.ca/pathways-online or fr.infolympho.ca/revue-pathways.

project “Yoga for Women with Arm Morbidity after Breast Cancer” including published study results and the yoga program that was developed by visiting roannethomas.ca/research/ yoga-and-breast-cancer.html

The International Lymphoedema Framework has released its new website and is pleased to showcase its newly launched Educational Benchmark Standards (www.lympho.org).

Watch for an article about these new standards in the Winter issue of Pathways.

Nutrition book

There is a new book for lymphedema entitled “Lymphedema and Lipedema Nutrition Guide” by Dr. Karen Herbst and several other authors. The book can be purchased from Lymph Notes (www.lymphnotes.com) or from Amazon and Indigo online.

Yoga for Lymphedema

In addition to the Australian-based research described by Alexandra Fabbi in her article “If you can breathe, you can do yoga”, (see page 20), there has also been Canadian research conducted on yoga for breast cancer patients who have experienced pain, range of motion restrictions and/or lymphedema (featured in Winter 2013 Pathways). Although the yoga used in the Australian and Canadian research studies are uniquely different, readers can learn about the Canadian

Journal of Lymphoedema

This peer-reviewed publication is a dedicated online journal for improving practice, raising awareness and setting standards for lymphedema care. It is now available free online. Check out their current issue for a description of the abstract the CLF presented about Pathways at the recent Asia Pacific conference in Darwin, Australia. www.journaloflymphoedema.com LP

Nominate your HERO canadacares.org

Caring Communities

We honour family caregivers and healthcare professionals.

In partnership with

Caring Communities

Canada Cares gives a $10,000 One Wish Award and National, Regional, Community and Employer Awards. To nominate and to see previous winners, visit canadacares.org Nominations close September 30, 2016.

Caregiver Friendly Workplace Award

In partnership with

INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES

In partnership with

FOR FAMILY CAREGIVERS & HEALTHCARE PROFESSIONALS

FOR COMMUNITIES

FOR EMPLOYERS

Caring Communities

In partnership with

Canada Cares is a program of the Canadian Abilities Foundation, a registered charity.

It supports, celebrates and recognizes family and professional caregivers.

Caregiver Friendly Workplace Award

Fa l l 2 0 1 6

In partnership with

B715

HEALTHCARE CENTRE

INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES

L y m p h e d e m a p a t h w a y s . c a 25

Education

Canadian and International Events

Syracuse, Sicily, Italy

KEEP THIS DATE OPEN: Jun 21-24, 2017 The 7th International Lymphoedema Framework Conference will be co-hosted with the Italian Lymphoedema Framework in Syracuse, Sicily, Italy and feature themed plenary sessions on chronic oedema in obesity, oedema and wounds, self-management and service models. Highlights will include LIMPRINT research and observational study results. n www.lympho.org

Letters to the Editor... is riber to th n a subsc t came rs fi I have bee it ce gazine sin a m s u lo ep fabu 2012. I ke spring of people, out in the e to other n zi ga a m e t th lending seem to ge they never d n a to , g er in howev on, I’m go be From now n subscri returned. ca ey th ple where uld o w I e, show peo m eanti ! In the m g themselves my missin f o e m er so plete set. m like to ord co a e I can hav issues – so

I love your magazine as I have obtained va luable info rmation.

I wanted to let you know though that I have rece ived two Summer 20 16 magazin es in error and on ly require on e.

(Just tr ying to save you money!)

I will dona te my extra magazine to my RMT’ s of fice.

Lindsay Spa nner Mississauga , Ontario

er Anoth sue! iful is u -a be t tions! ratula Cong ul! eautif just b

cLeish Wendy M na, BC ow el West K

Thank you fo r the a on “P r ticle recau in the tionar Summ y prac The re er 201 tices fo cent p 6 ublica r lymp much tions hedem issue conve in this rsatio a”. and p n amo area h atients ng he ave cr . Wha alth c eated individ t we h are pr ualize a v ofessio e d le appro a consid r n nals e d is th ach fo ered b at an r risk est pr highlig r e a d c u ti ction ht the ce. Th is dif fere e writ In my ers of nces ow n p b th e is tw r a ar ticle een S ctice, breas LNB v becau t canc s. ALN se the er rela with S D. te in d c id LNB, lymph ence those edem of for lym patien a is m phede ts are uch lo ma ed radioth not ro we r ucatio utinely erapy n. If th to reg triage referre e io d p a n tient r d for al lym a bas eceive ph no on ris eline s des, th k redu a ssess ey are ction. ment Th then and e is ar ti ducati cle is for wa on a wo n rd bas der ful ed on synop this a inform sis of r ticle ation going in my pr a messa nd res actice ge . T h earch to pro ank y . I wil mote ou ag l use Jean a con ain Pa Ann R s is th tent w ya n , R ays!

St. Jo NBN hn’s, Newfo undla nd

u or, Mei F rofess iate P York w e Assoc y of N it s r e Univ

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

Platinum Sponsorship

We would love to hear from you... canadalymph@live.ca

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

Silver Sponsorship

Bronze Sponsorship

Lymphedema Association of Newfoundland and Labrador 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

Fa l l 2 0 1 6

JOBST® FarrowWrap® SIMPLE DECONGESTION THERAPY THROUGH ADJUSTABLE SHORT STRETCH WRAP SOLUTIONS

THERAPIES. HAND IN HAND. www.jobstcanada.com

1-877-978-5526

MANUF./DISTR. J. VAILLANCOURT CORP./LTÉE/LTD

COMFORT, CONFIDENCE AND WELLNESS

MEDI LYMPHEDEMA GARMENTS

Valco - medi Canada 597, rue Duvernay, Verchères (QC) CANADA J0L 2R0

info@valco.ca • www.valco.ca • 1 800 361.3153