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Canada’s Lymphedema Magazine

Pathways

WINTER 2015

Empowering patients and professionals

Head and neck lymphedema Nutritional considerations Canadian lymphedema research

WH A T ’S INSIDE... Personal portraits

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NLN conference review

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Affiliate profile

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Ask the Expert


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Editor’s Message

My Inspirational Friends This issue features an article about head and neck from a well-known lymphedema educator, Steve Norton. This lesser known type of lymphedema is traumatic for those living with it as they typically, in addition to swelling, have difficulty swallowing, breathing, eating and trying to conceal and manage their condition. I respect and admire Willa Condy Seymour, the author of the Personal Perspectives story, for having the courage to wear the compression garment she requires for her head and still maintain her sense of humour.

Truly inspirational are the friends I have met – many who have gone on to start their own community groups, national advocacy initiatives, educational programs, blogs, informational websites and even a lymphedema radio station program. Hiding compression or swollen limbs is a natural instinct – but a wonderful book from the Netherlands, celebrates profiles of 28 people living with lymphedema or lipedema and who, like Willa are willing to showcase their journey and reveal their swollen limbs. You will find one of these beautiful portraits (Sandra Wijnhoven) on the cover of this issue. In September I attended the National Lymphedema Conference in Washington, DC. I always welcome the chance to network, increase my knowledge about lymphedema and share my learnings with Pathways readers. One workshop I really enjoyed was about

Current graduates and alumni of the Lymph Science Advocacy Program from the USA and Canada. nutrition by Hillary Sachs, an oncology dietitian. There are now several researched dietary factors that may modify the risk and progression of lymphedema, such as fluid, protein and sodium intake, anti-inflammatory dietary patterns, immune boosting foods and body weight. Although the conference was targeted to health professionals and researchers, one unique element of this biennial event is the Lymph Science Advocacy Program (LSAP) that motivates patient advocates to action by building their understanding of the basic science of the lymphatic system, as well as clinical and diagnostic research. Truly inspirational are the friends I have met – many who have gone on to start their own community groups, national advocacy initiatives, educational programs, blogs, informational websites and even a lymphedema radio station program. I am fortunate to be able to network with my LSAP colleagues at these events and stay connected through our chat group throughout the year. Martina Reddick addresses some common questions regarding the different treatment protocols and curriculums for lymphedema therapists across Canada in our Ask the Expert column. Education for health professionals is an important priority of the CLF

with several initiatives underway such as educational tools and events. We hope you will set aside the dates of October 23-24, 2015 for our second national lymphedema conference. This event will be co-hosted with the Alberta Lymphedema Association and will take place in Calgary, Alberta. The CLF Research Working Group has collaboratively compiled lymphedema related research that is either initiated in Canada or has Canadian clinicians and/or researchers involved. Our first compilation of lymphedema related research in Canada was featured in our Spring 2012 issue of Pathways and listed 15 studies and publications. We are thankful that Pamela Hodgson was again willing to compile this second repertory of research. It is impressive that there are now 24 studies listed. Remember, you can easily stay abreast of current research related to lymphedema yourself by searching online databases such as PubMed and publications such as the Journal of Lymphoedema. LP

Anna Kennedy

March is Lymphedema Awareness Month – I hope you will consider using the months of January and February to prepare a letter to your members of parliament, letting them know how lymphedema affects you and how advances in lymphedema diagnosis, treatment, research and education is urgently needed in this country.

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Contents

Head and Neck Lymphedema An introduction to specialized treatment Winter 2015

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Volume 4 Issue 1

Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates. Editorial Board Pamela Hodgson, PT David Keast MD FCFP Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Intern Nicole Boulet Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board. Contents may not be reproduced without written permission of the Canadian Lymphedema Framework. Subscription Rates (1 year) Canada–$25. International–$50. Single copies and back issues–$7. Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: canadalymph@live.ca www.canadalymph.ca Stock photos in this issue: CanStockPhoto Other photos are courtesy of NLNet, Fran Trachta

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

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Head and neck lymphedema requires a variation of the care provided for extremity lymphedema. Special considerations and precautions are to be taken when performing therapy on these patients.

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................................................................... Nutritional Considerations in Lymphedema The benefits of a balanced diet

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Nutrition and health typically go hand in hand. Maintaining good health and diet can positively impact lymphedema.

..................................................... Ask the Expert Explaining why lymphedema treatment protocol and reimbursement for care varies greatly across the country and within provincial jurisdictions.

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13

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

NLN Conference Review 900 healthcare professionals (including clinicians, therapists, researchers, surgeons and physicians) dedicated to advancing lymphedema treatment, research and advocacy gathered in Washington, DC. for a great conference.

................................................................... Canadian Lymphedema and Lymphatic Related Research A sample of publications and projects collected by the Canadian Lymphedema Framework Research Working Group about research being done across Canada.

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

Impressed By You!

Portraits and stories of patients with lymphedema and/or lipedema showcasing a book created to normalize lymphedema by getting to know patients as people, rather than leaving them to be defined by their illness.

........................... Lymph Story One patient’s journey with head and neck lymphedema inspires advocacy and perseverance when faced with life’s unique challenges.

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Clinical Perspectives

Head and Neck Lymphedema

An introduction to specialized treatment with CDT ck Ph oto

Head and neck lymphedema requires a variation of the care provided for extremity lymphedema. Special considerations and precautions need to be taken for treating this type of lymphedema.

Ph

By Steve Norton

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s with other clinical expressions of lymphedema, head and neck lymphedema (HNL) is broadly categorized as either primary or secondary. One primary syndrome, Milroy’s disease, involves significant lymphatic abnormalities of the extremities and also includes facial swelling with some regularity. Interestingly, in some cases precisely one half of the face exhibits involvement (sparing the contralateral side at the midline). Other genetic syndromes involve lymphedema of the face, but are rarely encountered by lymphedema specialists since edema is but one of a multitude of more serious medical concerns. Like extremity lymphedema, most HNL is related to direct lymphatic trauma typically induced by cancer and cancer therapy. It should be noted that severe and recurrent skin infections, which damage lymph nodes and neighbouring vessels also cause chronic lymphedema in some instances. Other causes of HNL include undiagnosed

obstructions (malignancy, thrombus) or any form of significant trauma. Cancer therapy At this time there are not sufficient data to suggest a causative relationship between current chemotherapy regimens and chronic HNL. However, radiation therapy and surgical excision (tumor debulking, lymphadenectomy) contribute serious trauma to the regional drainage of superficial and deep lymphatic territories. In addition to visibly apparent facial edema, head and neck cancer therapy commonly induces intraoral edema, which may only be detectable with endoscopy. These deep internal throat swellings coupled with superficial edema and altered anatomy often further impair speech, swallowing and normal breathing. Neck dissection surgeries are used to treat cancers of the head and neck region. They involve removal of lymphatic tissue and lymph node bearing tissue, the extent is dependent upon the level of dissection. This has an obvious impact on the lymphatic system. Additionally, the type of surgery will dictate what non-lymphatic structures are preserved. Sometimes the removal of veins is required;

Steve Norton CLT-LANA is a Clinical Instructor of Complete Decongestive Lymphatic Therapy. He has been practicing and teaching since 1993 and is the former Chief Therapist of Lerner Lymphedema Services, the first dedicated lymphedema clinic practicing CDT in the United States.

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this introduces the risk of combined edema (venous and lymphatic). Radiation therapy or radiotherapy is the use of high energy ionizing radiation to treat disease. It is a local cancer treatment used to kill cancer cells. Unfortunately, while effective in treating cancer, the side effects of radiotherapy may contribute to the development of lymphedema. Regional lymph uptake and transport will be impaired if lymph nodes are within the radiation field. Additionally, radiation therapy, while lethal to cancer cells, is also damaging to the healthy normal cells that are within the radiation field. As part of the process of recovering from radiation exposure, normal cells may become fibrotic or scarred. Due to this, radiated tissue is often rigid and less mobile. Fibrotic, rigid tissue may impede lymph transport and further contribute to the development of lymphedema. Special considerations for the Certified Lymphedema Therapist Head and neck cancer accounts for a small portion (3-5%) of the total spectrum of cancer incidence. Therefore, depending upon the therapists’ clinical setting, HNL may be rarely encountered. Since few certified lymphedema therapists have much experience with Ly m p h e d e m a p a t h w a y s . c a 5

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Manual Lymph Drainage (MLD) and compression must be significantly modified to tailor the intensive and homecare phases in reasonable fashion.

HNL, it is imperative for most to learn about the unique requirements and concerns of this patient group. With any particular patient, a knowledgeable physician will need to closely assess whether CDT is appropriate and whether there are any absolute contraindications. Within a well-considered plan of care, precautions and relative contraindications are proactively addressed for each individual, to allow treatment to proceed successfully. Unlike extremity lymphedema,

CDT challenges and precautions • vision obstruction (if eyelids are edematous) • breathing obstruction (if the throat is edematous) • tracheostomy tube (impact on compression solutions) • dysphagia (difficulty swallowing) • mucositis (ulceration of the mucous membranes) • xerostomia (dry mouth, decreased salivation) • trismus (inability to open the mouth widely) • impaired gag and bite reflex (loss of control) • inability to articulate words (due to lip and tongue edema and altered anatomy) • inability to speak (due to larynx, pharynx removal) • loss of identity, facial distortion (with marked emotional impact)

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HNL patients may exhibit certain challenges and precautions requiring careful adaptation of Complete Decongestive Therapy (CDT) techniques. Treatment adaptations Most well trained certified lymphedema therapists can carefully adapt CDT and achieve positive results, however Manual Lymph Drainage (MLD) and compression must be significantly modified to tailor the intensive and homecare phases in reasonable fashion. Blending intensive and homecare phases Patients always benefit from more time with a knowledgeable therapist. Consecutive daily treatments afford therapists the opportunity to intently study the unique presentation and challenges each patient brings while assessing the immediate responses to each session of therapy. Although many patients would benefit from this intensive approach, for HNL in particular, there are often impediments such as: competing medical appointments, transport reliance/ reliability, caregiver support, adequate physical energy and/or motivation, severe post-surgical disability or financial limitations. Acute side effects of surgery and radiation therapy, not limited to postoperative edema and desquamation, must resolve satisfactorily before implementation of lymphedema therapy. Following an in-depth lymphedema assessment (beyond the scope of this article) a strategy should be employed that involves administering professional MLD while training the patient or caregiver to perform self-treatment at home. Since MLD is limited to the trunk, neck and face, (areas that most people can easily reach) self-MLD is helpful and achievable from the first day of therapy. Stationary circles (one of the four Vodder strokes) alone suffice for addressing the skin of all areas and are easy to teach as self-care skills. MLD techniques performed inside the mouth are also beneficial and can be successfully used by many patients. Compression therapy, although productive, is approached with great caution since affected regions such as the neck or eyelids

cannot be compressed without risk to blood circulation, respiration or vision. Since in many cases, HNL patients are seen during, rather than after cancer therapy, skin within the field of radiation will be fragile, hypersensitive and intolerant of direct contact with compression materials without inducing pain or further injury. However, once these acute radiation effects have been resolved, compression should be used as early as possible for its many therapeutic benefits. Most HNL patients require multiple rest periods from wearing the bandage complex, including complete removal for 24-hours at a time. Therefore, to ensure safe and productive reapplication, self-care skills must be developed with the patient and caregiver immediately. Failure of patients to adhere to a plan of care that includes daily intensive self-care greatly diminishes the excellent clinical outcomes that are typically achieved. Although labour intensive, tedious and bothersome, these CDT self-care tasks offer great relief from lymphedema symptoms that would otherwise progress to a chronic stage. Specific suggestions for adapting CDT for HNL The nearest healthy regional lymph nodes are those with the axillae on both sides. However, in some, the supraclavicular fossa (SCF) may be spared injury and remain a viable target area for directing lymphatic loads. Careful reading of the surgical and radiotherapy report, as well as, assessment of the swelling severity, overlaid with the CDT’s aim to recruit collateral lymphatic circulation, will suggest possible solutions for MLD routes and sequencing. MLD sequencing to the trunk includes the following steps: 1 Prepare left axillary lymph nodes 2 Treat left chest and back to the left axilla 3 Prepare right axillary lymph nodes 4 Treat right chest and back to the right axilla 5 Treat anterior neck crossing the clavicular watershed to left and right axilla respectively 6 Treat submental, submandibular and anterior superior neck regions towards clavicular watersheds, then to the axillae Wi n t e r 2 0 1 5


If the anterior pathway is obstructed due to severe radiation fibrosis or surgical incisions: 1R  epeat steps 1-4 then, 2 T reat posterior neck and scalp 3 T reat lateral neck towards “spine-ofscapula� watershed 4 T reat cheeks and upper face superiorly then behind the ear and towards spineof-scapula watershed 5 Treat skin above the incision/blockage superio-laterally following the same pathway or to circumvent incisional limitations. It should be mentioned that, as compared to cancer therapy involving abdominal, axillary or inguinal lymph node beds, radiation fibrosis and edema develop far earlier in the skin of the head and neck

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following cancer therapy. Due to this early expression of lymphatic trauma, there is often motivation to intervene quickly to control these very sudden and alarming changes. As a positive consequence,

Before MLD.

After MLD.

therapists typically find that significant softening is possible in the irradiated skin and incision sites, which partially restores obstructed lymphatic drainage. With these gains, productive modifications or simplifications in the MLD sequence can be explored in a program of ongoing self-care. Compression Compression strategies include traditional short stretch materials, specially designed elastic face and neck coverings, or blends of both. To decide the best course of action and a safe daily regime,

continued on page 8

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therapists must assess the extent of edema, precautions that apply to any particular compression device and the amount of home care support available. Specific compression configurations and product lines are beyond the scope of this article, but many can be obtained through plastic surgery compression product distributors.

To decide the best course of action and a safe daily regime, therapists must assess the extent of edema, precautions that apply to any particular compression device and the amount of home care support available.

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In conclusion, profound improvement is possible for a large portion of this patient population. Early intervention with a trained rehabilitation professional or lymphedema therapist knowledgeable in HNL are key factors to successful intervention. LP

edema. Lymphology. Jun;42(2):51-60. 4. Weissleder, H., Schuchhardt, C. Lymphedema Diagnosis and Therapy. 4th ed. Viavital Verlag, Essen 2008. 264-273 5. Foeldi M., Strossenreuther R., Foundations of Manual Lymph Drainage. 3rd edition. Elsevier, 2005

References 1. Foeldi’s Textbook of Lymphology. For Physicians and Lymphedema Therapists, 3rd edition. Elsevier, Munich, Germany, 2012. 2. Smith B. Head and neck lymphedema In: Zuther, J., Norton, S., 3rd ed. Lymphedema management; The comprehensive guide for practitioners. Thieme; Stuttgart, Germany, 2013: 191-208. 3. Consensus Document of the International Society of Lymphology (2009). The diagnosis and treatment of peripheral lymph-

A full set of references can be found at www.lymphedemapathways.ca Editor’s Note: Specialty courses in HNL treatment are offered by LANA-recognized schools, many who are advertised in this magazine. It is suggested to contact these schools and your provincial lymphedema association for a listing of certified lymphedema therapists and help in sourcing those specially trained in head and neck CDT.

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Nutrition

Nutrition Considerations in Lymphedema The benefits of a balanced diet

Nutrition and health typically go hand in hand. This article is an overview of how to maintain good health and how diet can impact lymphedema. By Hillary Sachs Sodium Detector

How does lymphedema manifest? Lymphedema manifests in many ways that can affect a person’s nutrition and overall health. Some symptoms of lymphedema may impact one’s ability to carry out tasks related to food preparation. For example, pain may limit the ability to independently shop for groceries or carry and unpack bulky food items. Leg lymphedema may be made worse by standing in one place for long periods of time to chop and prepare food or upper extremity compression garments such as gloves or gauntlets may interfere with food preparation. Nutritional interventions: sodium Surprisingly, there is not much research that directly links sodium to lymphedema. However, we do know that in the human body,

water tends to follow salt. Thus, excess salt intake can cause water to be drawn into blood vessels increasing pressure on arterial walls, worsening swelling. In addition, high sodium foods are generally more processed, devoid of nutrients and less healthy. Sodium requirements How much salt should we be eating? Assuming we are not losing excess salt through sweating, vomiting, diarrhea, etc.? 1 In milligrams? 2 In tablespoons? 3 In teaspoons? ANSWER: Health Canada recommends eating between 1500 and 2300mg of salt daily. Canadians eat an estimated 3400mg daily. Sodium intake above 2300 mg per day is likely to pose a health risk. 1500 mg salt is ¾ teaspoon and 2300 is 1 teaspoon. Studies show that most sodium intake is through the salt in processed foods as opposed to added table salt. Source: http://hc-sc.gc.ca/fn-an/nutrition/ sodium/index-eng.php

Hillary Sachs MS, RD, CSO, CDN is a board certified oncology dietitian working in an outpatient chemotherapy center and as an oncology nutrition education consultant for Meals to Heal, a USA-based company dedicated to providing healthy meals, trusted information and access to oncology nutrition professionals. She uses evidenced based information to help patients minimize treatment related side effects and to guide survivors towards health and wellness.

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Learn how much sodium is in the foods we eat.

Source: http://www.healthycanadians.gc.ca/ eating-nutrition/healthy-eating-saine-alimentation/ sodium/detector-depisteur-eng.php

Pick the foods that are naturally high in sodium (choose all that apply): o Cottage cheese o Bread o Baking soda o Shellfish o Deli meat o BBQ sauce o Cheese ANSWER: all of the above!

Strategies to decreasing sodium intake Dramatically cutting out salt in the diet will generally result in less palatable foods. However, taste buds adapt to the taste of less salt over time. To increase compliance, it is recommended to reduce total daily salt intake by ¼ tsp or 600mg at a time until optimal daily intake levels are reached. Ly m p h e d e m a p a t h w a y s . c a 9

Photo: CanStockPhoto

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s an oncology dietitian, I often see how a cancer diagnosis leaves people with a lost sense of control. The risk, development and progression of lymphedema can also leave those afflicted feeling helpless. The good news is that there are several researched dietary factors that may modify the risk and progression of lymphedema, such as fluid, protein and sodium intake, anti-inflammatory dietary patterns, immune boosting foods, weight history and current body mass index (BMI).


should be consuming (EXAMPLE – a 120 pound woman would need 60 ounces (7.5 glasses) of water per day Provide 1 mL of fluid for every calorie taken in Provide 25mL of water for every kg of body weight

Strategies to help reduce sodium intake

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3 Eat more fresh, single ingredient foods 3 Eat more homemade foods 3 Buy fresh/frozen meat with no added sodium 3 Buy whole grain rice/pasta without seasonings; add your own 3 Make your own soups; use onion, carrots and celery for flavor 3 Replace salt in recipes with other herbs and spices 3 Rinse canned foods

Protein needs in lymphedema Protein requirements for the average, healthy person with lymphedema are generally: 100 lb person needs about 45-55 grams of protein per day 125 lb person needs about 57-68 grams 150 lb person needs 68-82 grams 175 lb person needs about 80-95 grams

• • • •

Protein needs increase with: o  increased activity level from moderate to vigorous o increased age o muscle wasting o open sores/pressure ulcers o wound healing o during active treatment Nutritional interventions: fluid intake There is no direct correlation between fluid intake and fluid retention. However, adequate fluid intake is critical for overall health and wellness. Fluids play a role in detoxification, both in helping with bowel movements, urination, maintaining temperature via perspiration, etc. 10 L y m p h e d e m a p a t h w a y s . c a

What counts as fluids?

Fluid needs and frequently asked questions Do caffeinated beverages count towards my fluid needs? Drinking caffeine has a mild diuretic effect (may cause the need to urinate), but studies show that caffeine does NOT cause excessive fluid losses or dehydration. Nevertheless, it is important to balance caffeinated and non-caffeinated drinks throughout the day.   What are my fluid needs? In general, fluid requirements are based upon a person’s weight. Assuming that a person is not losing excess fluids (through sweat, vomiting, diarrhea, etc.), fluid needs can be calculated as such: The National Cancer Institute suggests consuming 8–12, 8 oz cups of fluids per day. Divide a person’s pound weight in half: that is how many ounces per day they

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Protein content of foods Food

Serving Size

Grams of Protein

Hemp seed

2 tbsp

5

Quinoa

½ cup cooked 4

Nuts

¼ cup

7

Eggs

1 egg

7

Beans, cooked ½ cup

7

Spirulina

2 tbsp

8

Poultry/Beef

1 oz

7

Fish

1 oz

7

Tofu Firm

½ cup

10

Glass of milk

8 oz

8

Greek yogurt

6 oz

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Food Item Water Percent Apple 84 Banana 74 Blueberries 85 Cantaloupe 90 Grapes 81 Orange 87 Peach 88 Pineapple 87 Plum 85 Strawberries 92 Watermelon 92 Fruit Ice 86 Jell-O 93 Broccoli 91 Cabbage 93 Celery 95 Cucumber 96 Eggplant 92 Lettuce (Iceberg) 96 Carrots 87 Mushrooms 86 Peppers 92 Tomato 94 Broth 85 Yogurt 85 Nutritional interventions: dietary fats One function of the lymph system is to circulate dietary fat. Some studies show that limiting calories from fat to 15-20% of our overall intake (rather than the typical 25-35%), may improve lymphedema symptoms. In addition, certain kinds of fats are not primarily transported through the lymph system. These fats are called medium chain triglycerides (MCTs). Studies have shown that consuming these kinds of fats may decrease lymphedema symptoms. Coconut oil is one example of a fat that contains a large percentage of MCTs. Wi n t e r 2 0 1 5

Photos: CanStockPhoto

Nutritional interventions: protein intake Lymph fluid contains a large amount of protein in the form of albumin so it is not surprising that people assume that REDUCING protein intake may DECREASE lymph fluid. However, this is NOT the case. In fact, optimal protein intake is necessary to help repair skin and keep connective tissue strong. Moreover, it is important to replenish protein stores since some protein is lost in the fluid.

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weight loss. This approach helps to maintain the emphasis on nutrient rich, anti-inflammatory dietary patterns. Working with a registered dietitian can also help efforts. Future directions Anti-inflammatory foods, immune boosting foods, dietary supplements Currently there are no direct studies linking specific dietary patterns to lymphedema. However, with the understanding that there is a relationship between lymphedema, the immune system and inflammation, future studies may find that key foods will help patients to decrease edema volume, reduce abnormal blood vessel growth and improve immunity (see chart for a list of foods). It is essential to evaluate patients for adequate intakes of key nutrients, especially those that promote tissue healing like zinc and vitamin C.

Anti-inflammatory foods/spices alnuts W Curcumin  Saffron  Ginger 

canadalymph.ca

o o o o

o o o o

 R ed grapes Lemon  Wild blueberries  Green tea 

o o o o

S  eaweed B  eets C acao B  lack currants

oP  arsley o Omega 3 rich fish like wild caught salmon

National Lymphedema

Conference

Immune boosting foods Mushrooms Fermented foods (yoghurt, kefir, etc.)  Zinc rich foods (wheat germ, spinach)  Selenium rich foods  (sunflower seeds, brazil nuts) o Ginger, garlic, onions o Vitamin D o Broad spectrum of phytonutrients from fruits and vegetables

o o o o

Summary Overall, most evidence supports the following nutritional recommendations: o having no more than 2300 mg salt daily o consuming appropriate intake of macronutrients, approximately: n 15-20% fat n 30-35% protein n 45-55% carbohydrate Striving towards and/or maintaining a normal body weight by following Canada’s Food Guide and eating a broad spectrum of fruits and vegetables will benefit not only people living with lymphedema, but everyone. LP References are available at www.lymphedemapathways.ca.

SAVE the DATE

Calgary • October 23 - 24, 2015

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

Alberta Lymphedema Association

PARTENARIAT CANADIEN DU LYMPHOEDÈME

Conference Deadlines:

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education research partnerships

Obesity and lymphedema Most studies show there is a direct relationship between people who are overweight or obese and incidence of lymphedema. While the exact mechanism is not fully understood, excess weight creates more work for the lymphatic system. The additional fat deposition creates deeper separations in the lymphatic channels. • Researchers have learned that adipose (fat) tissue is not inactive. It is constantly secreting hormones and markers of inflammation. This inflammation can worsen lymphedema symptoms. • In addition, excess weight leads to decreased mobility, likely decreasing the ability to exercise. There are several strategies for weight management. Focusing on less processed whole foods with simple and recognizable ingredient lists is a healthy way to approach

Abstract submittal: April 1

Early-bird registration: July 1

Hotel discount: September 21

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Ask the Expert

Lymphedema Education, Treatment Protocol and Reimbursement

Care varies across the country and within provincial jurisdictions Common questions encountered while travelling across Canada as an educator of lymphedema and presenting to health professionals and patients. By Martina Reddick Should patients be offered MLD as and therefore their core curriculum is at the sole discretion of the individual school and the single treatment option? Program Director and based on their own Although MLD might be indicated as clinical experience. The Lymphology Associpart of the individual treatment plan ation of North America (LANA) is a for lymphedema, current research non-profit corporation composed literature does not support of health care professionals Any treatment that volume reduction can in the field of lymphology. be achieved with MLD plan should include Although not a regulatory alone. However, there the patient in the body, their purpose is to is strong evidence that discussions and be establish and maintain compression bandagbased on the assesscertification for health ing reduces edema. ment and individual professionals that provide Patients should have a patient goals. lymphedema services. thorough assessment and LANA’s recommendation to explanation of all the treatmeet the requirements of the ment options available to them, Complete Decongestive Therapy course such as MLD in combination with is 135 hours or greater. Most private schools compression bandaging and/or compression in Canada follow or exceed the LANA educapumps and compression garments. Exercise tional recommendations. The North American is another component that has proven effecLymphedema Education Association (NALEA) tive. Any treatment plan should include the is an alliance of four private lymphedema patient in the discussions and be based on therapy certification schools that are also the assessment and individual patient goals. trying to set and maintain high standards for education. The Canadian Lymphedema Why does the curriculum vary Framework (CLF) has recently published a between lymphedema schools that Position Document on standards for certified are teaching lymphedema therapists? Lymphedema education is generally pro- lymphedema therapists vided by independent, privately owned Why are some patients required and managed schools that are not part of our to pay privately for lymphedema publicly supported educational or healthcare treatment while for others it is covered by systems. Such schools are not accredited or health care? regulated by public institutional standards

Q A

Q

Martina Reddick is a nurse and lymphedema therapist in Newfoundland with her own business providing consulting and nursing services, after recently retiring from Cancer Care. She is a founding member of the Atlantic Clinical Lymphedema Network, a member of the Canadian Lymphedema Framework Advisory Board, Education committee and Chairperson of their nursing education subcommittee.

A

Lymphedema treatment is covered for some patients by their health care authority depending on the province in which they live. The Canada Health Act deems that essential physician and hospital care be covered by the publicly funded system, but each province has some license to determine what is considered essential, and where, how and who should provide the services. The result is that there is wide variability in what is covered across the country by the public health system, particularly in areas such as physiotherapy and assistive medical devices. Some provinces cover the costs related to either compression garments or complete decongestive therapy for both primary and secondary lymphedema, while other provinces provide no coverage at all and subsequently the patient is required to pay privately for treatment. Many community/home care nurses throughout Canada are treating chronic edema/ lymphedema effectively with compression bandaging alone. Some health care authorities have recognized the need and provide funding for lymphedema management. Positive reimbursement changes have recently been announced in Alberta and Quebec in regards to lymphedema coverage. For specific details on what is covered in your respective province please contact your local provincial lymphedema association. LP

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L y m p h e d e m a p a t h w a y s . c a 13

Photo: CanStockPhoto

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Conference Review

The Campaign for Lymphedema Care Perspectives, evidence and practices National Lymphedema Network Conference By Anna Kennedy

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hat happens when you assemble 900 healthcare professionals (including clinicians, therapists, researchers, surgeons and physicians) dedicated to advancing lymphedema treatment, research and advocacy in one room? Awe-inspiring synergy and energy. That was the dynamic ambience both at the opening ceremony and throughout the National Lymphedema Network’s (NLN) 11th conference held in Washington, D.C from September 3 – 7, 2014. The three and a half day event offered excellent plenary and instructional sessions with 50 additional

poster presentations and a tradeshow of 50 exhibitors. Both imaging and surgery were the hot conference topics this year, with a great number of presenters offering varying perspectives. I noted several presenters endorsing pneumatic compression pumps as a cost effective component of lymphedema treatment. There was also a focus on the need for better functional outcome measures for

Anna Kennedy spent 30 years in corporate senior management before transitioning to the charitable sector, after her diagnosis of lymphedema. She is the Executive Director of the Canadian Lymphedema Framework, Editor of Pathways magazine and a Board Director of the International Lymphoedema Framework. She has been a continuing LSAP participant at NLN conferences since 2006.

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patients with lymphedema that can more accurately measure any impairment. Better qualitative measurement tools are emerging to assist with this and a growing number of research is focusing on the quality of life for lymphedema patients. Imaging Various techniques for detection, diagnosis and assessment of lymphedema are being studied. Traditional imaging technology such as ultrasound and MRI are used to provide quantitative measurements of volume and thickness, and bioimpedance spectroscopy allows objective measurements of the severity of lymphedema and response to treatment in patients with lymphedema. Most exciting for me was seeing different applications of Wi n t e r 2 0 1 5


near infrared fluoroscopy (NIRF), an emerging tool in the field of lymphology. An injection of diluted ICG (indocyanine green dye) coupled with a camera allows visualization of the superficial lymphatic network architecture and lymphangion activity in real-time. The new insight in physiology this technology provides opens up new possibilities to adapt and improve existing treatment concepts. In fact, one researcher from Belgium (Belgrado) traces the individual lymphatic pathways seen during the NIRF test on the skin of the patient and sends a photograph to their therapist. This guides the therapist in directing the fluid during manual lymphatic drainage therapy. That was very impressive! Surgery Surgery remains a controversial topic at any conference – however, I was encouraged by the consistent message from each of the surgeon presenters (Brorson, Munnoch, Massey and Granzow), that all surgical treatment must always be part of an overall treatment protocol that still includes manual lymphatic drainage and compression. They emphasized that any surgical procedure is only appropriate for the patient after conservative treatment has failed. The greatest risk of recurrence is if the patient does not comply with the “mental contract” of wearing compression post-operatively 100% of the time, for the rest of their life. I started to understand the various surgical techniques and how they can be separated according to the stage of the lymphedema. Vascular Lymph Node Transfer (VLNT) and Lymphaticovenous Anastomosis (LVA) are modern techniques appropriate for lymphedema in the fluid stage, and liposuction is most beneficial when the LE is at the solid stage (from the residual fat that results from the stimulation of adipose stem cells). Impressive surgical outcomes were presented for a time period of anywhere from five to 20 years of data, supporting the various surgical Wi n t e r 2 0 1 5

techniques that each surgeon specializes in. We do need to worry however about the risk that many less experienced plastic surgeons with limited understanding of the lymphatic system, will start offering surgical techniques widespread. The general consensus was that more stringent standards and guidelines for surgery techniques and protocols for lymphedema are desperately needed. Exercise One study evaluated the effects of exercise modality (i.e. aerobic versus resistancebased (RE) exercise) on lymphedema status, strength, fitness and quality of life. The researchers concluded that while resistance exercise may be optimal for upper-body strength gains, preliminary findings highlight that health-related benefits are accrued from participating in either exercise type. As such, preference in exercise modality should be considered when prescribing

Both imaging and surgery were the hot conference topics this year, with a great number of presenters offering varying perspectives.

exercise to women with breast cancer related lymphedema (BCRL). Should compression be worn during resistance type exercise? Findings suggest that at least in the short term, moderate intensity upper-body RE performed without compression does not exacerbate lymphedema in women with BCRL. Factors including comfort and ease of mobility should be considered when discussing with the patient, garment use during RE exercise. A comprehensive review of the conference will be available in the NLN’s own publication, LymphLink (www.lymphnet.org) but the above highlights represent the key learnings I personally took away from this event. LP

Call For Abstracts: The Scientific Committee of the 2015 National Lymphedema Conference is calling for abstracts to present at the joint conference of the Canadian Lymphedema Framework and the Lymphedema Association of Alberta. This event will be held in Calgary, Alberta on October 23-24, 2015 at the Coast Plaza Hotel and Conference Centre. We provide a supportive, conference environment for graduate students and lymphedema clinicians, encouraging both new and experienced presenters to submit an abstract that showcases the work being done across Canada in lymphedema research or clinical practice. At our first national Canadian conference in 2014 – we received over 25 submissions and the two sessions, entitled Research Snapshots were the most popular of the concurrent sessions. All submitted abstracts will be considered for either oral or poster presentations and will also be published and posted on the CLF new website. Posters awards will be announced during a Friday evening reception (October 23). Submission guidelines can be found at www.canadalymph.ca. The deadline is April 1, with notification of selected abstracts on May 1. Scientific Committee 2015 National Lymphedema Conference

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Research Advances

Canadian Lymphedema and Lymphatic-related Research

Highlighting projects by Canadian researchers Jan 2012 – Aug 2014

By Pamela Hodgson

T

his sample of recent publications and projects highlights Canadian research in basic science, epidemiology, rehabilitation, surgery, and the social and nursing sciences. Greater understanding of the function and capacities of lymphatic vessels is emerging, as well as their important role in inflammation, adipose tissue metabolism, cancer, and other diseases, and of their ability to adapt after trauma. Surgical methods devised in part to prevent lymphedema may not yet be as effective as hoped. Treatments using different types of bandages and water-based exercise show promise, as do self-management techniques. Large population studies following breast cancer patients for 5 years are documenting the incidence and impact of lymphedema. A short film has been made on the experience of women with breast cancer related lymphedema. The need for reliable information for patients and physicians is being documented. Finally, but not least, Canadian researchers are collaborating with international teams to document and investigate how best to manage lymphedema.

Information needs Information for patients with or at risk of cancerrelated lymphedema. Dubois S, Folch N. Clin J Oncol Nurs. 2013. Oct. This University of Montreal team searched the Internet for information about cancerrelated lymphedema (CRL). They found 19 web sites (of 120) that met inclusion criteria. 79% of the sites focused solely on CRL; 74% were in English. Content was incomplete and evaluation of web site impact and effectiveness was nonexistent. This review suggests that websites about CRL vary greatly in terms of structure and content. The information needs and media preferences of Canadian cancer specialists regarding breast cancer treatment related arm morbidity. Shaw R, Thomas R. European Journal of Cancer Care. 2014. 23(1) 98-110. Providing specialists with summary information about arm morbidity does not suffice. An educational campaign that includes the importance of physician

Compiled by Pamela Hodgson of the Canadian Lymphedema Framework Research Working Group. Pamela Hodgson, RMT, MSc. works with Dr. Anna Towers at the McGill University Health Centre Lymphedema Program (Montreal, Quebec) as a research associate and lymphedema therapist. She is an active member of the Canadian Lymphedema Framework.

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vigilance in regularly monitoring patients for early and latent indications of this morbidity may be necessary. Treatment studies Breast cancer-related lymphedema: a randomized controlled pilot and feasibility study. Letellier M-E, Towers A, Shimony A, Tidhar D. Am J Phys Med Rehabil. 2014; 93(9) 751-63. The authors compared Aqua Lymphatic Therapy (ALT) combined with home-based exercise with home-based exercise alone, among patients with breast cancer-related lymphedema. The ALT group showed significant changes after 12 weeks of treatment, compared to the control group. ALT may serve as a safe alternative to land-based treatments of breast cancer-related lymphedema. A lymphedema self-management programme: a report on 30 cases. Tidhar D, Hodgson P, Shay C, Towers A. Physiotherapy Canada. August 2014. Advance online article. 28 participants with lymphedema were taught self-bandaging at the McGill University Health Centre Lymphedema Clinic. The majority had moderate to severe lymphedema; all achieved reduction of edema from between 48% and 92%. A majority reported a global rate of change of 80%. For selected patients, Wi n t e r 2 0 1 5


a self-bandaging program can be a route to lymphedema reduction, independence, and self-efficacy. A randomized trial of decongestive lymphatic therapy for the treatment of lymphedema in women with breast cancer. Dayes IS, Whelan TJ, Julian JA, Parpia S, Pritchard KI, D’Souza DP, Kligman L, Reise D, LeBlanc L, McNeely ML,

Manchul L, Wiernikowski J, and Levine MN. Journal of Clinical Oncology. 2013. An interview with Dr. Dayes appeared in the Spring 2014 issue of Pathways. Evaluation of the performance of a new compression system in patients with lymphoedema. Franks PJ, Moffatt CJ, Murray S, Reddick M, Tilley A, Schreiber A. Int Wound J. 2013. 10 (2):203-9

24 people with arm or leg lymphedema from clinics in England and Canada (Fredericton and St. John’s) were treated with the two-layer system of bandaging for 19 days. Mean percentage changes in limb volume were 14.9% and 16.1% for legs and arms, respectively. The authors concluded that the new compression system provided good edema reduction and improvements in symptoms associated with lymphedema. A prospective study to identify factors that predict the performance of the 3M oedema reduction system (Coban) and standard compression used within decongestive lymphatic therapy in patients with lymphedema. Tilley A. A team including members from the previous study aims to enroll 264 participants overall from Japan, England, France and Canada (33). One Canadian site will use the 3M system and another will use the standard compression system.

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Laboratory research Inflammation-induced lymphangiogenesis and lymphatic dysfunction. Liao S, von der Weid PY. Angiogenesis. 2014. 17 (2) 325-34. This review provides a critical update on the role of the lymphatic system in disease processes such as chronic inflammation and cancer and examines the changes in lymphatic functions, the disease’s cause and the influence these changes have on the progression of the disease. Electrophysiological properties of rat mesenteric lymphatic vessels and their regulation by stretch. von der Weid PY, Lee S, Imitiaz MS, et.al. Lymphat Res Biol. 2014. 12(2) 66-75. Researchers examined the properties of rat mesenteric lymphatic muscle (Vm) under resting conditions and when distended. In their experimental conditions, they found that rat lymphatic muscle has electrophysiological characteristics similar to that of other species. It responds to an increase in isometric tension with an increase in action potential frequency, but Vm is not significantly affected. Wi n t e r 2 0 1 5


Atherosclerosis and transit of HDL through the lymphatic vasculature Martel C, Randolph G J. Curr Artheroscler Rep. 2013. 15(9) 354. Researchers focus on recent evidence that the lymphatic vasculature is critical for the removal of cholesterol, likely as a component of HDL, from tissues including skin and the artery wall. It is possible that progression of atherosclerosis might in part be linked to sluggish removal of cholesterol from the plaque. Macrophage reverse cholesterol transport in mice relies on the lymphatic vasculature. Martel C, Li W, Fulp B, et.al. J. Clin Invest. 2013; 123 (4) 1571–79. The team found that macrophage reverse cholesterol transport (RCT) was markedly impaired in 2 models where lymphatic drainage was disrupted and found that RCT was mediated by lymphatic vessels from the aortic wall. The lymphatic vessel route is critical for RCT from multiple tissues, including

the aortic wall. These results suggest that supporting lymphatic transport function may facilitate cholesterol clearance in therapies aimed at reversing atherosclerosis. Lymphatic function is impaired following irradiation of a single lymph node. Baker A, Semple JL, Moore S, Johnston M. Lymphat Res Biol. 2014. 12 (2) 76-88. The aim of this controlled experimental study performed at the Sunnybrook Research Institute using a rabbit model was to quantify the impact of lymph node irradiation on lymph flow. The authors found that irradiation impaired lymph transport and increased the pressure required to maintain flow through the system. New vessel formation and the growth of lymph-venous anastomoses indicated the development of alternative drainage pathways as a compensatory response. Mechanisms of VIP-induced inhibition of the lymphatic vessel pump. von der Weid PY, Rehal S, Dyrda P, et.al.

J Physiol. 2012. 590 (11) 2677-91. This study found that vasoactive intestinal peptide (VIP) decreases the frequency of lymphatic contractions and hyperpolarizes the lymphatic muscle membrane potential in a concentrationdependent manner in the guinea pig. Inhibition of lymphatic pumping by VIP may compromise lymph drainage, oedema resolution and immune cell trafficking to the draining lymph nodes. Lymphatic vessel function in atherosclerosis. Martel C. Researchers previously demonstrated that cholesterol gets out of tissues and reaches the bloodstream by first entering lymphatic vessels. This emerging research team aims to develop further understanding of the mechanisms connecting abnormal lymphatic function and atherosclerosis progression. Start-up funds have been awarded by the Montreal Heart Institute Foundation and grant submissions elsewhere are in process. continued on page 20

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Canadian researchers are collaborating with international teams to document and investigate how best to manage lymphedema.

Surgery Axillary reverse lymphatic mapping in breast cancer surgery: a comprehensive review. Seyednejad N, Kuusk U, Wiseman SM. Expert Rev Anticancer Ther. 2014. 14 (7) 771-81. The authors found that the axillary reverse lymphatic mapping (ARM) technique had several limitations that include a poor success rate for identification of arm lymph nodes (ARM nodes) and lymphatics. The occurrence of common lymphatic drainage pathways of the arm and the breast in a subset of patients raises concerns regarding its oncological soundness. The effectiveness of the ARM procedure in reducing lymphedema risk in breast cancer patients who undergo a variety of treatments has yet to be clearly defined. Axillary reverse mapping in breast cancer: A Canadian experience. Kuusk U1, Seyednejad N, McKevitt EC, Dingee CK, Wiseman SM. J Surg Oncol. 2014 Jul [Epub ahead of print]. 37 women received sentinel node dissection (SNL) and 15 received axillary node dissection. The authors concluded that the axillary reverse mapping technique did not prevent identification of the SLN and they identified much greater crossover than previously reported. Impact of lymphedema The New Normal: Living with Lymphedema after Breast Cancer. Quinlan E, Thomas R, Ahmed S, Fichtner P, McMullen L, Block J, Juxtapose Productions (producer). 2014. Peer-review: CES4Health http://www.ces4health.info/findproducts/view-product.aspx?code=DLFLZP5W This educational YouTube Video features an ethnodrama performance of the lived experiences of breast cancer survivors 20 L y m p h e d e m a p a t h w a y s . c a

with arm problems along with interviews with the researchers and participants involved in the production. (French or English) Lymphedema trajectories among breast cancer survivors. Quinlan E, Thomas R, Hack T, Towers A, Kwan W, Miedema B, Tatemichi S, Tilley A. Journal of Lympheodema. 2014.9 (1) 12-19 Researchers followed women for two years and found that lymphoedema increased over time and that there was a confounding effect of arm dominance. This emphasizes the need for pre-operative measurement of both arms. Illustrating the (in) visible: Understanding the impact of loss in adults living with secondary lymphedema after cancer. Thomas R, Hamilton R. Int J Qual Stud Health Well-being. 2014 Aug 21;9:24354. This research indicates that timely diagnosis, increased awareness and the development of new resources and psychosocial supports are needed to enhance quality of life for those living with secondary lymphedema. Loss, adaptation and new directions: The impact of arm morbidity on leisure activities following breast cancer. Hack T, Quinlan E, Tatemichi S, Towers A, Kwan W, Miedema B, Tilley A, Hamoline R, Morrison T. Under review. Canadian Journal of Nursing Oncology. Aug 2014 Beyond the body: Insights from an iyengar yoga program for women with disability after breast cancer. Thomas R, Quinlan E, Kowalski K, Spriggs P, Hamoline R. Holist Nurs Pract. 2014 Nov-Dec; 28(6):353-61. Qualitative interviews and participants’ journals show that there were a number of benefits to the yoga program.

Other Determining the precision of dual energy x-ray absorptiometry and multi-frequency bioelectric impedance spectroscopy in the assessment of breast cancer-related lymphedema. Newman AL, Rosenthall L, Towers A, Hodgson P, Shay C, Tidhar D, Vigano A, Kilgour RD. Lymphatic Research and Biology. 2013, 11(2): 104-109. The team determined that the two measurement instruments provide acceptable levels of precision for the measurement of arm lean mass, fat mass and extracellular fluid volume. The Alberta moving beyond breast cancer (AMBER) cohort study: a prospective study of physical activity and health-related fitness in breast cancer survivors. Courneya KS1, Vallance JK, Culos-Reed SN, McNeely ML, Bell GJ, Mackey JR, Yasui Y, Yuan Y, Matthews CE, Lau DC, Cook D, Friedenreich CM. BMC Cancer.2012.12.525. This study aims to enroll, in Alberta, 1500 newly diagnosed patients with breast cancer and to follow them for 5 years. This will provide comprehensive data on the outcomes, determinants, mechanisms, and moderators of physical activity and health-related fitness in breast cancer survivors. Effect of early compression therapy on incidence of lymphedema in patients treated for gynecological cancer Shallwani S, Towers A, Hodgson P, Yung A, Salvador S, Gotlieb W, Gilbert L, Khan S, Kham L. The aim of this prospective randomised trial is to investigate the effect of early compression therapy with individualized education and exercise on the incidence of lymphedema in patients surgically treated for gynecological cancer. LP

Editor’s Note: This list of studies is not exhaustive. Pathways welcomes information about any research. Readers can learn how to access the details of some of these studies by visiting www.lymphedemapathways.ca.

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Personal Perspectives

Impressed by You!

Portraits and stories of patients with lymphedema and/or lipedema A book created to normalize lymphedema by getting to know patients as people, rather than leaving them to be defined by their illness. By Joyce Bosman and Els Brouwer

L

ymphedema is a condition whereby patients suffer from swollen limbs or other body parts, either due to cancer surgery or because of a congenital malfunctioning lymphatic system. The path these patients have to travel before they receive a correct diagnosis can be long and they often feel pushed from pillar to post! Lipedema is often confused with lymphedema and literally means “swelling of fat”. Lipedema appears almost exclusively in women and is expressed as a disproportional spread of fat in the lower body. Lipedema patients typically get little psychological support because they feel misunderstood and are often seen only as being overweight. An important and inevitable part of the treatment protocol for lipedema and especially lymphedema is compression therapy. Wearing compression is unfamiliar to the general public. The resulting taboo (derived from lack of awareness) makes wearing compression difficult for lymphedema patients. They experience a double hit. Not only do they have a chronic condition but they are required to wear compression every day. This makes going to school, playing

sports, participating in social occasions or creating relationships more difficult. However, compression is to lymphedema, what medication is for many other diseases: indispensable! Compression therapy with lipedema and/or lymphedema combines many different products. In the initial phase of lymphedema, bandaging is the main treatment and in the maintenance phase, medical compression stockings or sleeves are used, sometimes in combination with Velcro bandages. With lipedema, bandaging is an option when there is a lymphedema component, but in most cases compression will be in the form of therapeutic elastic stockings or Velcro devices. Recently, the Dutch Lymphedema Network (NLNet) published a book titled “Impressed by You”, that follows 28 patients with lymphedema and lipedema along with their clinicians, family members or friends. It shows that compression in everyday life doesn’t need to be a struggle. Through the stories in the book, we show that the focus is not on the stocking or sleeve, but on the people, their personalities, and what they are up against in daily life; having to be concerned about their appearance and obligation to wear compression garments. We intend to break the taboo and show all the health care professionals the environment of the patient, that you can be

seen with lymphedema or lipedema. You are allowed to be beautiful. Awareness and understanding of these disorders facilitates early diagnosis so that long term problems are prevented. The book was created on a volunteer basis ​​with personal stories of patients. The impressive stories have one thing in common. Lymphedema and lipedema always come uninvited into your life. LP Editor’s Note: One of the photo portraits in this book is featured on the cover of our Pathways magazine.

Joyce Bosman and Els Brouwer are board members of the Netherlands Lymphedema Network (NLNet) and creators of the book “Impressed by You”. The book is currently available in both Dutch and English and can be ordered via www.impressedbyyou.com.

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Patient Perspectives

Lymph Story

One patient’s journey with head and neck lymphedema inspires courage and perseverance when faced with life’s unique challenges.

I

n 2009, I started wearing compression garments on my head. It took three years of wearing the garments, but my head swelling improved and the circumference decreased by two inches. I am blessed that my husband has good medical coverage and I was finally able to get a night time compression garment. I only found out in 2012 that I had primary full body lymphedema. By then, I had swelling not only on the left side of my face, but also in both arms, one leg and in my torso. It was not news anyone wants to receive. That same year, I attended a lymphedema awareness day, organized by the BC Lymphedema Association. It was both wonderful and frustrating at the same time. I got to talk with experts and fellow patients, which was an invaluable experience. The frustration

She encouraged me to use exercise and compression garments for my legs. was realizing how treatment and support for lymphedema is lacking in BC for those who have primary or secondary lymphedema from any surgery other than breast cancer. I am grateful for the advice and help I have received on this journey. On two separate occasions, I ended up visiting Ottawa, and met with an amazing lymphedema

My advice

to anyone dealing with lymph issues is—

By Willa Condy Seymour

remember to laugh.

therapist during each visit. She encouraged me to using exercise and compression garments for my legs. She also recommended that I exercise in the pool and I now swim three times per week. I sleep in night time garments, both for my head and my arms. I practise self-massage, and use a low intensity light laser to help me cope. I also have lymphatic massage twice a week. Last year, I managed to lose 40 pounds, which helped take some pressure off my lymphatic system. This past April, I also started acupuncture treatments. It helped me get through the summer. Lymphedema makes waking up in the morning interesting, as I never know what the day will bring. My facial lymphedema has crossed quadrants and the right side of my face has now started swelling as well. During the day, I never know whether I’ll end up looking like Dolly Parton, or Beyoncé in

Willa Condy Seymour is 58 years old, has experienced facial swelling for eight years and in the past five years was diagnosed with full body lymphedema. A member of the BCLA, Willa thanks her husband, family, friends, doctors and therapists for her positive outlook and continued quest to learn how to help herself manage the lymphedema.

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the booty! I view lymphedema as a dragon: any time I relax and goof off I get flamed! I try to inform and educate others about lymphedema. When I travel, I don my “bank robber mask” and my best earrings. I explain why I am wearing compression garments and then hear them tell me about their sister, cousin or friend that is dealing with lymph issues. Even though I don’t wear my facial garment on a daily basis anymore, I still talk about lymphedema. I explain what I have and what I am doing to manage it. Knowledge is power. When I have a bad night I find myself using the internet to find answers or to check out what strides are being made in treatment options. I belong to Facebook support groups and a support group in my area. My advice to anyone dealing with lymph issues is—remember to laugh. Remember that it is your body—not your doctor’s or your therapist’s. They are very important in helping to deal with lymphedema, but we, the patient need to be in charge. Also remembersometimes we have to cry. Lymphedema can change our body but it can’t touch our souls! Keep looking out and stay involved in life. LP Wi n t e r 2 0 1 5


Affiliate Profile

Lymphedema Association of Manitoba The Lymphedema Association of Manitoba (LAM) is a non-profit organization founded in 2011. Their early objectives were for the provision of resources, information, education, awareness and support to those affected with or at risk of primary or secondary lymphedema, their families, health care professionals and the general public: Their mission statement: “The Lymphedema Association of Manitoba will work to ensure Manitobans impacted by lymphedema have equal access to appropriate resources.” Their motto: “BREAKING DOWN BARRIERS”. A brief history: Even though they are a young organization and still experiencing growing pains, their brief history showcases many accomplishments:

2011 - The LAM was born with three cofounding Directors, enacting LAM’s by-laws. 2012 - LAM’s first Annual General Meeting was held and a Board of Directors elected. Produced our first Manitoba insert for Pathways magazine. 2013 - Hosted two full days of sharing information. Day 1 - Lymphedema Stakeholders Meeting and Day 2 - First Annual Lymphedema Awareness Day Symposium. 2014 - Produced LAM’s position paper on lymphedema in Manitoba (which evolved from the information shared at the 2013 Stakeholders meeting). •H  osted 2nd Annual Lymphedema Awareness Day Symposium with Dr. Anna Towers as the Keynote Speaker. • Developed an informational brochure. • Created LAM’s Professional Advisory Committee (PAC) and a speaker’s bureau to help raise lymphedema awareness. • L AM’s President was appointed to the

CLF Board of Directors. • Bill 209, 3rd Session, 40th Legislature, Manitoba, 62 Elizabeth II, 2013, The Lymphedema Awareness Day Act received Royal Assent to proclaim March 6 as Lymphedema Awareness Day in Manitoba. • L AM submitted application for charitable status. This is in progress. • Unveiled LAM’s signature jewelry piece which depicts the journey. This unique piece was created by Hilary Druxman. 2015 - Lymphedema Awareness Day Symposium to be held on March 14, 2015 in Winnipeg, MB at the Hilton Winnipeg Airport Suites. The Lymphedema Association of Manitoba will work collaboratively with other organizations, groups, corporations, etc. to create awareness and educate the public on this chronic lifetime condition. For more information, contact the LAM by email lymphmanitoba@yahoo.ca or visit their website www.lymphmanitoba.ca

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Helpful Suggestions

Hints and Tips

Photo: Juzo

oc kPh

oto

Recycle-reuse Instead of throwing out those old, stretched out compression sleeves or t a nS stockings—why not mark Photo: C them as your backup supply to use when you are gardening, swimming, painting etc. You can wear them on top of your new compression garments for added compression and protect them as well. Another option is to wear two older compression garments on top of each other.

Knock your socks off Diabetes socks are non-binding and non-elasticated socks which are designed so as not to constrict the foot or leg. Usually they are also seamless so there are

no pressure points on the foot that may cause chaffing or blisters. They are typically made of fabric that has been treated to reduce moisture and bacterial growth and can be found in the hose section of most pharmacies. They can be a great benefit for leg lymphedema. Lymphedema awareness month Use the winter months to focus on lymphedema awareness in March. • Write your MP/MPP about your

personal story and include a copy of this magazine • Send that same story to your local press or community news • Post on Facebook and Twitter • Organize a community event or fundraiser to share information and raise funds for the CLF or your local provincial association. 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 canadalymph@live.ca.

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Help us celebrate this year’s Award Winners: Warriors in Pink design in benefit * of

NATIONAL WINNER (FAMILY): Tammie Dales, Family Caregiver, Western Region NATIONAL WINNER (PROFESSIONAL): Chris Everdell, Professional Caregiver, Central Region REGIONAL AWARD WINNERS: Carole Maretic, Family Caregiver, Western Region Bryan Gay, Professional Caregiver, Western Region Randy Villeneuve,, Professional Caregiver, Western Region Richard Migneault Sr., Family Caregiver, Central Region Marijo Cuerrier, Family Caregiver, Central Region Claude Bouffard, Family Caregiver, Central Region Caring Communities

Sandra D’Alessandro, Professional Caregiver, Central Region Donalda MacIsaac, Family Caregiver, Atlantic Region In partnership with

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*LympheDIVAs will donate $10 per sleeve and $5 per gauntlet to The Pink Fund for each Warriors in Pink design sold.

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

Canada Cares is a not-for-profit that supports, celebrates and recognizes family and professional caregivers. In partnership with

INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES

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Advocacy Efforts

Did You Know?

Celebrity endorsement Congratulations to the Lymphatic Research Foundation who received the support from celebrity Cathy Bates, to kick off their annual fundraising walk. Ms. Bates is a famous actress who underwent a double mastectomy a few years ago and now has lymphedema in both her arms.

KLOSE TRAINING ONLINE The leader in lymphedema education.

Online Ce COurses fOr

lymphedema

• Advance your lymphedema therapy skills. • Progress through courses at your convenience. • Avoid travel costs and missed time from work. • Review lessons as many times as you like during your four weeks of online access. • Enjoy your “front-row” seat every course.

Approved for LANA recertification.

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Children lymphedema project The International Lymphoedema Framework has released two videos—filmed at the Lymphoedema Children’s Camp in Montpellier, France (2012). The videos depict this unique camp experience as well as an explanation geared to children on what lymphedema is and both the physical and emotional impact. Look for the Canadian participant, nine-year-old Austin Avanthay from Manitoba! The videos can be seen at www.lympho.org. LP

Head & Neck

Lymphedema Management

Elastic Taping for Lymphedema

Wound Care

for Lymphedema Therapists

Physician’s Lecture on Lymphedema

The Role of Exercise in Lymphedema Management

Differential Diagnosis

Identifying the Etiology of Edema Klose Training also provides the highest-quality 135-hr Lymphedema Therapy Certification course in North America. This cost-effective course combines internet-based home-study with in-classroom hands-on instruction. Phone 303-245-0333 Fax 303-245-0334 info@klosetraining.com www.klosetraining.com

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

Photo: www.lympho.org

The Lymphedema Advocacy Group’s 2014 Lobby Days took place in September in Washington DC. Eighty-five patient advocates from 24 states participated. To educate Congress about lymphedema and raise support for the Lymphedema Treatment Act, advocates met with approximately 150 individual offices and delivered information to nearly all others. They also hosted a Congressional

Briefing, and almost 40 patients, ranging in age from nine to 71, took part to represent the “face of lymphedema.” As a direct result - 21 new cosponsors were gained, as of October. This trip really underscored the importance of direct communication from constituents!

Photo: deadline.com

Photo: CanStockPhoto

Lymphedema Treatment Act, USA


Education

Letters....

Canadian and International Events March 6-7, 2015 The Lymphedema Association of Ontario Toronto, ON  will be holding its 17th annual lymphedema conference for patients and health professionals at the Sheraton Airport Hotel and Conference Centre. Keynote speaker is Dr. Kathleen Francis plus Dr. David Keast and Dr. Dalia Tobbia are guest speakers. n www.lymphontario.org March 14, 2015 Lymphedema Association of Manitoba Winnipeg, MB Awareness Day Symposium being held in Winnipeg, MB at the Hilton Winnipeg Airport Suites. Details coming soon. n www.lymphmanitoba.ca September 7-11, 2015 25th World Congress of Lymphology San Francisco, USA Conference boasts an expected 1000 clinicians, basic and clinical scientists, therapy professionals and patient advocates as well as leading faculty and international guest speakers. n www.lymphology2015.com October 23-24, 2015 The 2nd Canadian National Lymphedema Calgary, Alberta Conference will be co-hosted by the Canadian Lymphedema Framework and the Alberta Lymphedema Association, in collaboration with the University of Calgary. Prof. von der Weid is one of the keynote speakers. n www.canadalymph.ca

Letter to the Editor...

“With the very first m agazine, I already learned so mething new, so ju st imagine what all the people who thou gh t they were alon e with lym phedema felt when they open ed up Pathways for the first time. Education and aware ness motivates patients to advocate for the hel p they nee d”.

Silver Sponsorship

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

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

Bronze Sponsorship

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

b ker, P of Que el Pritz ciation – Rach a Asso m e d e Lymph

“At th e time our C confe anada rence wide –D calls  iane Mar d id starte tin, Preside n o t have d, Ma nt Alberta Lymphedem an as nitoba Collab a Associat socia oratin ion tion. g with provin o ther d cial p edica rofess encou ted ionals ragem was th e nt an to get e d sup Manit port n oba’s the gr eeded assoc ound iation . I am of this of f proud move to be ment creati part in Ca ng lym nada p h a of e nd pr d e m We would a awa ovidin renes g a ve evide s love to hear r y pro nce-b fessio ased nal, public from you... – Kim ation” Avanth . ay, If you would like

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

ae educ been th s a s to h u ays abled “Pathw has en t a hip, th rs l e too r read tional a wide share to y t tl u n o ie reach nd effic a ly k d e ema quic lymph and to d-wide rl o w nals, nd rofessio local a ealth p h ia and h d it ls, me news w ort ia ic ff o e supp ment ec. Th b e u govern n Q e ome ss this ph ts acro y art of tr p patien n g u o in c e eive, b ss the we rec m acro ed tea d n te x . l” nal e vationa ly moti t is high ec residen

Lymp h

Presid ent, a Ass ociati on of M

edem

anitob

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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 Ontario Lymphedema Association of Quebec Lymphedema Association of Saskatchewan

Charitable Registration 85160 1260 RR0001

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Compression

Club

Conversations in Changing Practice & Improving Patient Outcomes go.3m.com/CompressionClub Join the 3M Compression Club

3M and Coban are trademarks of 3M. Used under license in Canada. © 2013, 3M. All rights reserved. 1304-00993

As health care providers, you play an important role in improving the quality of life of your lymphedema & chronic edema patients, especially when it comes to compression bandaging. We invite you to visit our online compression club to network, ask questions, and learn from one another. Share tips & tricks, connect with colleagues, or ask the experts all your compression-related questions. • discuss & share your own experience treating patients with lymphedema • learn from colleagues and industry experts • stay up-to-date on industry news and events

Learn More To learn more about 3M Coban 2 Layer Compression System Products, visit us at www.3m.ca/coban2layer, contact your 3M Critical & Chronic Care Solutions representative or call the 3M Health Care Customer helpline at 1 800 364-3577. These products can be ordered from your local distributor.


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Pathways Winter 2015  
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