Pathways Spring 2016 (Volume 5, Issue 2)

Canada’s Lymphedema Magazine

Pathways

SPRING 2016

Empowering patients and professionals

Inspiring young minds

Symptom reporting tool Lymphofluoroscopy WH A T’S INSID E... Ask the expert I Patient perspective I Hints and tips I Healthy habits I Events calendar B653_CLF_Pathways_Spg2016.indd 1

3/8/16 9:05 AM

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

FOR ALL YOUR COMPRESSION NEEDS POUR TOUS VOS BESOINS EN COMPRESSION VALCO LYMPHOLOGY TEAM AVAILABLE TO ASSIST YOU medi compression garments Delivery 5 to 8 business days from receipt of completed order Clinical emergency service available

L’ÉQUIPE DE LYMPHOLOGIE VALCO EST À VOTRE SERVICE Vêtements de compression medi Livraison 5 à 8 jours ouvrables sur réception de commande complète Service d’urgence clinique disponible

YOUR TOOLS TO LYMPHEDEMA MANAGEMENT VOS OUTILS DE GESTION DU LYMPHŒDÈME 597, rue Duvernay, Verchères (QC) CANADA J0L 2R0 B653_CLF_Pathways_Spg2016.indd 2

info@valco.ca • www.valco.ca • 1 800 361.3153 3/8/16 9:05 AM

Editor’s Message

Making a difference in people’s lives

T

he recent loss of my 89-year old mother gave me the opportunity to pause and reflect on all her positive qualities that I have hopefully passed down to my young adult children as well. My mother lived the simple life of a Dutch immigrant, but she spent her life giving generously of her time and money to many different causes that were dear to her heart. Whether it was helping out as a “visiting homemaker”, serving meals at her church, volunteering with handicapped children or knitting tiny caps for premature babies, she believed it was her duty to make a difference in someone else’s life.

In this issue we feature a unique story about young people making a difference.

Many of us involved in the lymphedema world are at an age where succession is a concern. At times it feels like there are few younger people behind us to take up the torch and continue the work we have started. This is a common concern that I hear from founders of the provincial associations, as well as directors of the Canadian Lymphedema Framework and the International Lymphoedema Framework.

In fact, the National Lymphedema Network

in the USA just recently lost their Founder and Executive Director, Saskia Thiadens, and now face the challenge of continuing to build upon her important legacy.

It is appropriate that this issue features a story about inspirational young people who are passionate about contributing to the lymphedema community in new and innovative ways. It is also fitting that a young person, the CLF’s own Nicole Boulet, a communications student at Wilfrid Laurier University, writes the story.

I have been very impressed with the work of these young people and it gives me hope that there is a new generation eager to improve the lives of people living with lymphedema.

It is encouraging to learn about the work of researchers who are committed to finding ways to understand lymphedema better. Dr. Mei Fu, from New York University, is one of those researchers and has previously written several articles for this magazine. She and her team continue their research work that focuses on the impact of lymphedema on breast cancer survivors. I thank her for sharing some of her research and continuing to contribute to this magazine.

Lymphfluroscopy is an emerging tool that is gaining traction in its application to the lymphedema world.

Dr. Belgrado is a physical therapist and researcher in Belgium. I have heard him present at several Anna Kennedy international conferences and was impressed by how he has incorporated this tool into physical therapy for lymphedema.

It is important to note that in Canada, lymphfluroscopy is still used primarily in research and not yet in clinical practice.

We can only hope that someday soon we will also have therapists in our country using this technology to aid in their manual lymphatic therapy.

The patient perspective column in this issue is written by Debbie Ciotti-Bowman— the mother of one of the young people featured in our other story. Debbie shares her journey and frustrations in finding the right diagnosis and therapy for lymphedema— emphasizing that patience is key in finding the right experts. It is unfortunate that this is still a common complaint among many people living with lymphedema.

“I think that Pathways is providing a great service and has the potential to be a first spring board for researchers and teachers in Canada.”

We were fortunate to have a table of lymphedema experts at the fall national conference in Calgary. The event ended with our popular Panel of Experts session.

We have transcribed some of the questions and answers from this session for the benefit of our Pathways readers.

Pathways continues to be a forum for sharing information and education to those living with lymphedema and those who support their care. Dr. Anna Towers, one of the Pathways Editorial Board members states, “I think that Pathways is providing a great service and has the potential to be a first spring board for researchers and teachers in Canada.”

Thank you to all our readers, advertisers and contributors for helping us continue this great service. LP

Spring 2016 Ly m p h e d e m a p a t h w a y s . c a 3

B653_CLF_Pathways_Spg2016.indd 3

3/8/16 9:05 AM

Contents

Spring 2016

n

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

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

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

Subscription Rates (1 year) Canada–$25.

International–$50.

Single copies and back issues–$7.

Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca Stock photos in this issue: CanStockPhoto Other photos are courtesy of C.Bowman, V.Lee, B.Hua, D.Ciotti-Bowman, JP Belgrado

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

B653_CLF_Pathways_Spg2016.indd 4

5

Volume 5 Issue 2

Symptom reporting as a useful tool to detect lymphedema For breast cancer survivors and healthcare providers

Self-reporting provides preliminary understanding of lymphedema symptoms.

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

Lymphofluoroscopy A valuable tool to monitor decongestive treatment and enhance care

9

Use of fluorescent dyes and cameras are shown to be an effective examination and treatment tool.

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

13

NLN Position Paper Healthy habits for patients at risk for lymphedema.

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

Inspiring young minds take the lymphedema world by storm A look at what students have in mind for the future of lymphedema

14

A new generation of lymphedema community members.

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

Patience is a virtue

A story of how lymphedema has transformed a family’s lives.

20 22

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

Ask the Expert A panel of experts answer your lymphedema questions A snap shot from the National Lymphedema Conference.

Considering attending the International Lymphoedema Conference in Australia May 2016? Be sure to sign up at www.lympho.org as an ILF affiliate member in order to register at a reduced rate. See page 21 for conference contact information.

Spring 2016

3/8/16 9:05 AM

Research Perspective

Symptom reporting as a useful tool to detect lymphedema For breast cancer survivors and healthcare providers

Self-reporting provides preliminary understanding of lymphedema symptoms. A cost effective way to diagnose lymphedema.

By Mei R. Fu

B

reast cancer-related lymphedema (hereafter, lymphedema) is an omnipresent concern for breast cancer survivors, who face a lifetime risk of lymphedema 1. Lymphedema is a syndrome of abnormal swelling coupled with multiple symptoms resulting from obstruction or disruption of the lymphatic system associated with cancer treatment 2-7, 1.

Many breast cancer survivors suffer from daily distressing symptoms related to lymphedema (hereafter, lymphedema symptoms), including arm swelling, breast swelling, chest wall swelling, heaviness, firmness, tightness, stiffness, pain, aching, soreness, tenderness, numbness, burning, stabbing, tingling, arm fatigue, arm weakness, and limited movement in shoulder, arm, elbow, wrist/fingers 4-7. The experience of lymphedema symptoms has been linked to clinically relevant and detrimental outcomes, such as disability and psychological distress, both of which are known risk factors for breast cancer survivors’ poor quality of life (QOL) 4-7. More importantly, lymphedema symptoms may indicate an early stage of

lymphedema in which changes cannot be detected by current objective measures of limb volume or lymph fluid level 4,9. Without timely intervention in this early disease stage, lymphedema can progress into a chronic condition that no surgical or medical interventions at present can cure 10. Symptom report using a reliable and valid instrument may play an important role in detecting lymphedema during clinical visits at the hospital or by patient’s self-assessment at home 9, 11-13. Previous research suggests that an increased number of patient-reported lymphedema symptoms indicate an increased limb volume in the affected limb 7.

A new study led by researchers at New York University examines the validity, sensitivity, and specificity of symptoms for detecting lymphedema among breast cancer survivors who are at risk for lymphedema. The study, published in Breast Cancer: Targets and Therapy, also determines the best clinical cut-off point for the count of symptoms.

This article is a summary of the study to help breast cancer survivors and healthcare

Dr. Mei R. Fu (PhD, RN, FAAN) is a Tenured Associate Professor of Nursing at New York University. Her research informs effective ways of performing symptom assessment and implementing risk reduction behaviours, which has profound sustained effect on national and international clinical practice for lymphedema care. She has completed award-winning research to demonstrate the effects of provision of lymphedema information on cancer survivors’ cognitive, behavioural, and symptom outcomes.

Jeanna M. Qiu, Research Intern; Kavita Rampertaap, RN, BSN; Nardin El-Shammaa, BA are co-authors and are also from New York University.

Spring 2016

B653_CLF_Pathways_Spg2016.indd 5

providers to better understand the role of symptom reporting in detecting lymphedema.

The researchers recruited 250 adult female participants with lymphedema from a metropolitan cancer center and communities in the New York City area. The study examined the validity (the ability of symptom-report to

Women who reported arm heaviness, arm firmness, increased arm temperature, seroma formation, tightness, limited arm movement, tingling, and arm aching had more than five times the odds of lymphedema. distinguish patients with lymphedema and without it), sensitivity (rate of true positive cases), and specificity (rate of true negative cases) of symptoms for detecting lymphedema defined by >200 mL limb volume in the affected limb using a sequential circumferential tape measurement. The study also aimed to determine the best clinical cut-off point for symptom count that maximized the sensitivity and specificity for detecting lymphedema as defined by >200 mL limb volume.

Participants were divided into three groups: healthy female adults, breast cancer survivors at risk for lymphedema, and those with lymphedema. Sixty healthy female adults, without a history of breast cancer Ly m p h e d e m a p a t h w a y s . c a 5

3/8/16 9:05 AM

or lymphedema, served as the comparison group. The dominant arm of the healthy women was considered the “affected arm”.

One hundred and forty-eight breast cancer survivors were in the at-risk group. These women had completed surgical treatment within five years prior to study enrolment and had never been diagnosed with lymphedema. Forty-two breast cancer survivors with lymphedema served as the known lymphedema group, and their selfreported lymphedema was confirmed by the review of medical records and sequential circumferential arm measurements of >200 mL difference in limb volume between the affected and non-affected arms.

A self-report instrument, Breast Cancer and Lymphedema Symptom Experience Index, was used to measure the presence of lymphedema symptoms and distress from the lymphedema symptoms 12-13. This instrument had a high internal consistency with a Cronbach’s alpha coefficient of 0.92, indicating that it is reliable to measure symptoms related to lymphedema, 14, 11-13.

The instrument was also valid, with convergent validity (r=0.35-0.93), indicating that the instrument is able to differentiate breast cancer survivors with and without lymphedema based on the lymphedema symptom occurrences and distress (P<0.05) 12-13. The instrument assesses

Quality Products for Chronic Edema & Wound Care

Head to Toe… Day & Night… We’ve Got You Covered.

Questions? Give us a call - We’re Here to Help.

1-855-857-8500 | www.Lym phedemaDepot.com 6 Ly m p h e d e m a p a t h w a y s . c a

B653_CLF_Pathways_Spg2016.indd 6

24 lymphedema symptoms listed in Table 1 (see page 8). All three groups were similar in education and marital status. However, significantly more women in the lymphedema group were unemployed and non-white, and had a significantly higher body mass index than women in the healthy or at-risk groups. More women in the lymphedema group had undergone clinical procedures such as mastectomy, chemotherapy, and axillary lymph nodes dissection. The healthy adults were significantly younger than the participants in the at-risk and lymphedema groups. Breast cancer survivors with lymphedema had significantly more lymphedema symptoms in comparison with the healthy adults and at-risk survivors.

The most commonly reported lymphedema symptoms by breast cancer survivors with lymphedema were arm swelling (100%), tightness (71.4%), heaviness (71.4%), firmness (69%), aching (61.9%), tingling (59.5%), limited arm movement (57.1%), and tenderness (52.4%).

Bivariate odds ratios, which measure the risk or odds of having lymphedema given each symptom, were calculated. Significant odds ratios were found to have strong associations with arm lymphedema and limb volume >200 mL, except for symptoms of breast and chest swelling. Thus, only 22 symptoms were used in the data analysis.

Of the remaining 22 odds ratios, significant odds ratios (P < 0.05) were found for all symptoms except stabbing, arm soreness, and blistering. Certain symptoms indicated higher odds of having lymphedema.

For example, women who reported arm heaviness, arm firmness, increased arm temperature, seroma formation, tightness, limited arm movement, tingling, and arm aching had more than five times the odds of lymphedema compared to women without these symptoms. Similarly, women who reported symptoms of limited finger movement, limited elbow movement, and limited wrist movement had more than four times the odds of lymphedema compared to women without these symptoms. Women who reported pain in the affected arm had about twice the odds of lymphedema compared to women who did not report that symptom. continued on page 8 Spring 2016

3/8/16 9:05 AM

B EAUT IFU L C OM PR ES S I O N G L O VES AR E HER E !

G LO V E F E ATU R E S CORRECT FINGER COM PRE SSI ON Graduated pressure is delivered from fingers into the palm, circulating fluid toward the body COMPLET ELY SEAML E S S D E S I GN Reduces binding and finger webbing irritation NO DOUBLE C OMPRE SSI ON State-of-the-art knit eliminates double compression at the wrist when worn with an arm sleeve

G A R M E N T F E ATURE S MO I ST U R E WICKING G R A D U AT ED 2 0 -3 0 mmHg + 3 0 - 4 0 m m Hg COMP RESSION L I G H T WEI GHT FA BRIC H Y P O A L L ERGENIC I N F U SED W ITH A LOE VERA

www. l ymphedi v a s.com Spring 2016

B653_CLF_Pathways_Spg2016.indd 7

Ly m p h e d e m a p a t h w a y s . c a 7

3/8/16 9:05 AM

The researcher used Youden’s method, a statistical test that helps to determine the optimal cut-off point for a diagnostic test with numerical results (such as the number of symptoms), using a receiver operating characteristic (ROC) curve 15-16. The ROC curve was constructed with sensitivity and specificity data. According to this method, the best clinical cut off point was three symptoms, in order to differentiate healthy participants from survivors with lymphedema, and nine symptoms was the best cut-off point to differentiate at-risk survivors from survivors with lymphedema. A diagnostic cut-off of three symptoms discriminated

breast cancer survivors with lymphedema from healthy women with a sensitivity of 94% and a specificity of 97%, while a diagnostic cut-off of nine symptoms discriminated at-risk survivors from survivors with lymphedema with a sensitivity of 64% and a specificity of 80%.

Findings of this study suggest that, despite medical advances, lymphedema still has a large, negative impact on breast cancer survivors’ quality of life. Patients with lymphedema reported many symptoms with significantly higher frequencies compared to the at-risk group or healthy group. While more research needs to

TABLE 1

Lymphedema symptoms and odds ratio for developing lymphedema Symptom

Yes

No Odds Ratio (higher odds ratio indicates a higher risk of having lymphedema given each symptom)

1.

Arm swelling

561.00

2.

Arm heaviness

17.46

3.

Arm firmness

10.33

4.

Increased arm temperature

9.07

5. Seroma formation

8.61

6. Arm tightness

7.78

7. Limited arm movement

5.86

8. Tingling in affected arm

5.54

Arm aching

5.14

10. Limited fingers movement

4.56

11.

Limited elbow movement

4.39

12.

Limited wrist movement

4.23

13. Limited shoulder movement

3.84

14. Stiffness in the affected arm

3.55

15. Burning in the affected arm

2.86

16. Arm redness

2.47

17.

Numbness in the affected arm

2.40

18.

Stabbing in the affected arm

2.12

19.

Tenderness in the affected arm

2.07

20.

Pain in the affected arm

1.99

21. Arm soreness

1.44

22. Blistering in the affected arm

0.97

9.

As a patient who previously received surgical treatment for breast cancer, if you mark “Yes” for arm swelling alone or for nine or more of the above symptoms, please see your healthcare providers immediate for further evaluation of lymphedema. Remember, early diagnosis and early treatment often lead to better clinical outcomes.

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

B653_CLF_Pathways_Spg2016.indd 8

be done to investigate the causes of lymphedema symptoms, this study may provide preliminary understanding. It is likely that the accumulation of lymph fluid in the affected limb leads to sensations of heaviness, tightness, and firmness, as well as aching and tingling as a result of the pressure the fluid puts on the nerves. In addition, the accumulated lymph fluid may lead to stiffness and limited limb movement of the arm, shoulder, fingers, and elbow.

Increased temperature in the affected limb may be because of inflammation in that limb.

The study bolsters the potential of using symptom report as a useful method to detect lymphedema. Since early intervention leads to better clinical results, patients with >9 symptoms should be evaluated immediately and treated in a timely manner, as >9 symptoms can differentiate at-risk patients from patients with lymphedema.

This study provides evidence that patient self-reported symptoms actually have the ability to discriminate between patients with lymphedema and those without, with fairly high sensitivity and specificity. Typically, more objective tests are preferable to subjective symptom assessment by patients themselves; however, considering that patients with lymphedema and its symptoms have a poorer quality of life overall, the perception of lymphedema from the patient’s point of view may be of more importance than solely quantitative measures. Finally, symptom count is a very efficient and cost-effective method for screening patients at high risk of lymphedema.

The researchers of this study are also currently working on improving breast cancer survivors’ self-care abilities through mobile device applications. An electronic version and mobile version of the symptom assessment tool have been used by patients to report their symptoms during clinical visits and to evaluate their odds of developing lymphedema at home. Future research should focus on more prospective studies that track the development of lymphedema among patients at-risk to determine the predictive ability of symptom report in detecting lymphedema. LP A comprehensive set of references can be found at www.lymphedemapathways.ca.

Spring 2016

3/8/16 9:05 AM

Treatment Advances

Lymphofluoroscopy A valuable tool to monitor decongestive treatment and enhance care Fluorescent dyes and cameras are effective examination and treatment tools

By JP Belgrado

T

here has been much discussion regarding the use of ICG fluoroscopy in the management and diagnosis of lymphedema. This short paper will explain reasons for its use and application in clinical practice.

The quest for imaging of the superficial lymphatic network using contrasting products started over 200 years ago. However, due to the specific physiological structure, fragility and size of the lymphatic vessels, researchers have always had difficulty finding a specific tracer that might be sensitive and specific enough for lymphatics and was also minimally invasive, affordable and suitable for in vivo examinations.

Indocyanine Green (ICG) is a well-known fluorescent dye that has been used in angiology, cardiology and hepatology for A

many years. More recently, it has been applied to lymphology. This complements the collection of lymphatic imaging tools to study lymphedema and the superficial lymphatic system in humans.

For the first time, ICG Fluoroscopy provides us the ability to visualize the lymphatic system in real time. Through the use of a specific camera equipped with infrared diodes and adapted filters, the lymphatic architecture and propulsion can be seen. In addition, the pathway of the drainage of the lymph or failings of the system can also be recognized.

This report draws on the conclusive experience of over 700 lymphofluoroscopies, carried out during the examination of primary and secondary lymphedema, as well as on healthy subjects.

Initial lymphatic network is not visible, it drains normally into functional lymphatic collectors which are visible.

Indocyanine green (ICG)

Infrared Diode 760 nm M.W. 776 Da O=S=0

O=S=0

O-

O- Na

+

Colored glass Filter 850 nm

Adapted image from FĂśldi by courtesy

Desmettre, Devoisselle JM, and M.S., Fluorescence properties and metabolic features of indocyanine green (ICG) as related to angiography. Surv Ophtalmol, 2000. 45 Mordon, S., et al., Indocyanine green; physiochemical factors affecting its fluoresence in vivo. Microvasc Res, 1998. 55(2):p. 146-52

Jean-Paul Belgrado (corresponding author) has clinical experience in the treatment of lymphedema as a physiotherapist. He is also Professor in Lymphology at the Faculty of Human Motility at the UniversitĂŠ Libre de Bruxelles, and Head of the Lymphology Research Unit.

L.Vandermeeren, S.Vankerckhove, J.Wigg and F. Liebens (contributing authors).

Spring 2016

B653_CLF_Pathways_Spg2016.indd 9

When lymphatics collectors are not functioning, lymph moves towards the initial lymphatics enlarging the vessels and making them visible.

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

3/8/16 9:05 AM

Indocyanine Green (ICG) is a well-known fluorescent dye that has been used in angiology, cardiology and hepatology for many years.

More recently, it has been applied to lymphology.

This minimally invasive examination consists of an intradermal injection of a small volume of highly diluted ICG (0.2mg). This is usually injected in the webbed spaces of the hand or foot depending on the area to be examined.

The dye binds with the local lipoproteins (LP), albumin and fluid that are localized in the interstitium (the place the edema is situated) and then reaches the lymphatic circulation.

During the examination, a camera is used that emits an infrared light, and this excites the couple IGC-LP. In this condition, ICG-LP,

diluted into the water of the lymph, becomes fluorescent. At this point, the lymphatic network is revealed to the camera. The signal is filtered and amplified and shows dynamic images of the lymphatics on a screen which can be recorded as necessary.

Immediately following the injection, the lymphatic system at the injected area starts to become visibleâ&#x20AC;&#x201D;the lymphangions are able to be seen pumping, and as time progresses, the entire superficial lymphatic network, connected with the injected area and its superficial lymph nodes becomes visible.

The whole topography of the superficial lymphatic network of the injected anatomical region appears as a dynamic route map that provides valuable information to understand the personal situation of each individual. With this knowledge the therapeutic choice can then be customized.

The anatomical regions that are involved in an edema and where the lymph collectors are not functioning are clearly highlighted:

Examination of a breast cancer-related lymphedema.

the rerouting of the lymph that flows through the initial lymphatics appears as a very dense, tortuous and small vessel network.

Functional vessels appear as straight lines.

The efficiency of valves can be tested and the contractility of the lymphangion is perfectly visible. Dedicated software allows for the measurement of the mean velocity of the lymph flow into the lymph collectors (how well the lymphatics are functioning/draining).

When the normal lymphatic pathways do not work, the fluid and macromolecules are redirected to other functional territories to be drained. This specificity is also visible

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

Lymph Taping 14 hr training

Lymphedema management The most comprehensive 160 hr training.

Problem-solve your challenging patients. ~ Evidence-based

The latest Cure Tape method with Froukje Potijk, PT

~ Easy learning modules with small class sizes

Toronto: June 19 - 21 Vancouver: June 25 - 26 Halifax: July 4 - 5

~ Learn precise manual skills with expert, accredited instructors

~ Interactive, live classroom instruction with physicians

~ 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

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

B653_CLF_Pathways_Spg2016.indd 10

Spring 2016

3/8/16 9:05 AM

during the exam. This provides information to the therapist to change the direction of the manual lymphatic drainage. The image on page 10 (examination of a breast cancerrelated lymphedema) shows that fluid on the dorsum of the hand reaches the palm, which is not the usual anatomical pathway.

In addition to the functional information, fluoroscopy shows substitution pathways.

Substitution pathways are the drainage routes taken by the fluid to drain if another area fails or is blocked. These pathways can be drawn on the patient’s skin during the examination to provide details in order to customize the MLD treatment protocol for each individual patient (see photographs).

NIR Fluoroscopy has helped us to optimize manual lymphatic drainage techniques: using a double camera, one in the visible field and the second on the fluorescence, we can observe in real time the efficiency of each manoeuver. The team evaluated existing MLD techniques and following the feedback of fluoroscopy have developed an optimized technique which has demonstrated moving more fluid faster and more effectively.

This technique is now being used at the University of Brussels physiotherapy training, and is being rolled out globally through the Lymphoedema Training Academy. After the emptying of the lymph nodes, the technique consists of two main maneuvers of clearing the lymphatics with the ‘flush’ manoeuver and filling the collectors with the ‘fill’ manoeuver.

This method of MLD will be known as the ‘Fill and Flush’ method or Fluoroscopy Guided Manual Lymphatic Drainage (FG-MLD) and has taken many years to refine following the mapping of the lymphatics.

Fluoroscopy has also been used to study intermittent compression therapy, where we performed studies with customized transparent sleeves to allow the flow to be visualized.

The effects of multicomponent bandages have been studied using lymphofluoroscopy.

The tracer’s progression is observed and Spring 2016

B653_CLF_Pathways_Spg2016.indd 11

recorded during the drainage from differing therapies. It is possible with this technique to observe the effects of diverse physical treatments such as different manual lymphatic drainage methods, intermittent compression therapy, multicomponent bandages or effect from wearing garments.

More recently, fluoroscopy helped us to define the occlusion pressure of superficial lymphatics, which is a slightly higher pressure than previously believed. It provides evidence that leads us to understand that we can use more pressure when carrying out Manual Lymphatic Drainage.

Dr. JP Belgrado’s guide to manual drainage.

The use of fluoroscopy imaging is changing the focus of lymphedema management and offering improved care pathways. This basic outline of its uses demonstrates the major advantage of this imaging technique

is the possibility to observe, in real-time, fluid movements from the interstitial space to the lymphatics; lymph propagation velocity, contraction rate, kinesiology of the lymphangions and mapping of substitution pathways. It allows for the detection of subclinical lymphedema.

In lymphedema, “ectopic” lymph nodes, which are not described in the literature, can be highlighted giving valuable data to optimize the treatment protocol.

Lymph nodes share the drainage of different anatomical territories. When the pressure increases in a lymph node, because it cannot drain itself to the consecutive lymph node (adenectomy or lymphatic impairment of the downstream network), and because one of afferent lymph collectors continues to pump Woman 52 years old.

Wertheim surgery three years before starting edema in the lower right limb.

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

3/8/16 9:05 AM

NIRF to improve the knowledge about intermittent Compression Therapy related to lymphatic system and develop new concepts.

lymph into it, the lymph is “rerouted” to one or more of its afferent lymph collectors instead of to the efferent lymph collector.

The reflux of lymph coming from the lower limb into the collectors that drain the labia majora is one example of this characteristic.

Lympho fluoroscopy allows us to identify that reflux before the labia start to swell, then possibly to surgically clip the collectors, impeding the reflux. We perform this simple surgery in our lymphology clinic with encouraging results (top right picture).

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

B653_CLF_Pathways_Spg2016.indd 12

In addition, in the operating room, lymphofluoroscopy used pre-operatively protects the lymphatic vessels and nodes during surgery by identifying them more clearly.

In conclusion, patients, surgeons and therapists are finding possibilities in this emerging tool to expand their visual spectrum in the field of near infrared.

Improving knowledge in lymphology, mapping of the superficial lymphatics provides a view of the individual pathways used and therefore can lead to improvements

Near Infrared Fluorescence Imaging showing the superficial substitution lymphatic pathways after the intradermal injection of the ICG.

in application of MLD. It may prevent secondary lymphedema in high-risk patients, by helping surgeons to easily find and protect the lymph nodes and lymph collectors that drain the limb. LP

Corresponding author, belgrado@ulb.ac.be Editor’s Note: Fluoroscopy at the moment is a research tool and not used in regular practice in Canada.

Spring 2016

3/8/16 9:05 AM

Healthy Habits for Patients at Risk for Lymphedema Healthy Lifestyle:

Skin Care:

A healthy diet and exercise are important for overall good health.

Make sure that your skin is in good condition.

Maintain optimal weight through a healthy diet and exercise to significantly lower risk of lymphedema.

• Gradually build up the duration and intensity of any activity or exercise. Review the Exercise Position Paper.* • Take frequent rest periods during activity to allow for recovery.

• Monitor the at-risk area during and after activity for change in size, shape, tissue, texture, soreness, heaviness, or firmness.

•

Medical Check-ups:

Infection Education:

Find a certified lymphedema therapist (CLT).*

Know the signs of infection and what to do if you suspect you have one.

Review your individual situation, get screened for lymphedema, and discuss risk factors with your CLT. • Ask your CLT or healthcare professional if compression garments for air travel and strenuous activity are appropriate for you.

• If a compression garment is recommended, make sure it is properly fitted and you understand the wear, care, and replacement guidelines.

• Set a follow-up schedule based on your needs with your CLT. • Report any changes in your at-risk body part to your CLT. •

TEAR AWAY

Keep your at-risk body part clean and dry.

• Apply moisturizer daily to prevent chapping/chafing of skin.

• Pay attention to nail care and do not cut cuticles.

• Protect exposed skin with sunscreen and insect repellent.

• Use care with razors to avoid nicks and skin irritation.

•

Signs of infection: rash, itching, redness, pain, increased skin temperature, increased swelling, fever, or flu-like symptoms.

• If any of these symptoms occur, contact your healtcare professional immediately for early treatment of possible infection.

• If a scratch or puncture to your skin occurs, wash it with soap and water, apply topical antibiotics, and observe for signs of infection.

• Keep a small first aid kit with you when traveling.

•

TRY TO AVOID POSSIBLE TRIGGERS

Injury or Trauma • Wear gloves while doing activities that may cause skin injury (eg, washing dishes, gardening, using chemicals like detergent).

• Try to avoid punctures (eg, injections and blood draws).

Limb Constriction • Wear loose jewelry and clothing.

• Avoid carrying a heavy bag or purse over the at-risk limb.

• Try to avoid blood pressure cuffs on the at-risk limb.

Extreme Temperatures • Avoid exposure to extreme cold, which can cause rebound swelling or chapping of skin.

• Avoid prolonged (> 15 min.) exposure to heat, particularly hot tubs and saunas.

Prolonged Inactivity At-risk for leg lymphedema?

• Avoid prolonged standing or sitting by moving and changing position throughout the day.

• Wear properly, fitted footwear and hosiery.

Please Note: These guidelines are meant to help reduce your risk of developing lymphedema and are NOT prevention guidelines. Because there is little research about risk reduction, many of these use a common-sense approach based on the body’s anatomy and knowledge gained from decades of clinical experience by experts in the field. Risk reduction should always be individualized by a certified lymphedema therapist and healthcare professional.

For a full list of the NLN’s risk reduction practices, please see our website: www.lymphnet.org/riskreduction *To review the NLN’s other position papers and find a CLT in your area: www.lymphnet.org Reprinted with permission.

B653_CLF_Pathways_Spg2016.indd 13

3/8/16 9:05 AM

Community Work

Inspiring young minds take the lymphedema world by storm

A look at what these young adults have in mind for the future A new generation of lymphedema community members

By Nicole Boulet

A

ny news about advancing lymphedema care, awareness and research is always exciting. Recently, more and more young people have shown an interest in the lymphedema community and have begun developing their own research, projects and products around the condition. This article not only highlights their work, but also aims to celebrate some of the young people across Canada who are making a difference in the community through their personal achievements and advocacy.

Catharine Bowman Catharine Bowman, a 17-year-old high school student from Hamilton, Ontario is conducting research focusing on the effectiveness of particular natural compounds to treat underlying factors of lymphedema. She made quite a splash at the recent National Lymphedema Conference with her lunchtime presentation, “Let’s Talk Lymphedema—Making a Difference in the Lymphedema Community” though she has been making the difference that she passionately spoke about long before the October 2015 conference.

Catharine Bowman address at the BC Lymphedema Conference 2015.

The more

Catharine comes from When Catharine was that is understood a very close-knit family eight years old, her of research and and credits her three mother was diagnosed background, the older brothers for with Stage 3 metastatic greater the chances melanoma. Following her inspiring her interest in of uncovering a surgery, she developed science and research. pharmacological secondary lymphedema In her free time Cathasolution. in her leg. Catharine rine competes in science remembers feeling frustrated fairs, has been coaching a girl’s basketball team for three that her mother was now dealing years, and also performs in a number of with a chronic disease but instead of letting community and school bands, as well as her frustration consume her, Catharine and in her own band, the Number Stations. It’s her family came together to make a positive evident through her pastimes that Catharine impact on the lives of others. has a passion for community engagement, The first time she met a lymphedema and paired with her love of science, she has patient other than her mom, was at a science fair a few years ago where she met conducted some truly inspiring research. an 8-year-old boy with primary lymphedema.

It reminded her of the necessity for research— Nicole Boulet works part-time as the Communications Coordinator for the a need that she is now contributing to Canadian Lymphedema Framework, made possible through funding from the fulfilling through her own research, which Canada Summer Jobs program. She is from Toronto and is in her fourth year of she says is in honour of every lymphedema Communication Studies at Wilfrid Laurier University. patient she’s met.

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

B653_CLF_Pathways_Spg2016.indd 14

Spring 2016

3/8/16 9:06 AM

ALS_C

REGISTER NOW!

Lymphedema Management Courses Our Lymphedema Management courses are widely known as the best in the industry!

Complete Lymphedema Certification Course Our Accelerated Hybrid Online Program blends the optimal mix of Internet-based online instruction of 45 hours with live classroom instruction of 90 hours to provide an unparalleled education. Participants become completely certified in just 9 days in class! This certification course covers the four components of CDT, the management of lymphedema, and much more!

With course completion, participants will be able to differentiate between a variety of peripheral edemas, and understand the medical indications and contraindications of CDT. Therapists will be able to establish a treatment plan for Complete Lymphedema Certification Course individuals with chronic extremity lymphedema (135 hours) and perform the treatment accordingly. (135 June 4-12 Calgary, AB total hours) $3150 July 9-17 Toronto, ON

CLT Recertification Program Now Available Online Recertify and refresh your skills today!

Call for more details

Lymphedema Management Seminar

Early Registration Discounts and Financing Options Available.

Introduction to the management of lymphedema for uncomplicated cases affecting the upper and lower extremities, using Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy.

(31 hours) NOTE: THIS IS NOT A CERTIFICATION COURSE. $895

A variety of helpful support materials included in course tuition

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

urse Host a Co !

Spot Earn a FREE urses co r ou g in To br n tio to your loca ails Call for Det

Tuition in US dollars.

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

Academy of Lymphatic Studies is endorsed by the

www.acols.com | 1.800.863.5935

ALS_CANADA_Mag_FullPg_2015.indd15 1 B653_CLF_Pathways_Spg2016.indd

11/12/15 4:34AM PM 3/8/16 9:06

Specifically, Catharine’s research began in 2014 when she conducted a preliminary set of studies at McMaster University in Hamilton, Ontario, looking at natural compounds and their anti-inflammatory properties. Dr. Pierre-Yves von der Weid, a lymphedema researcher at the University of Calgary, received her proposal and invited her to Calgary to research alongside him for six weeks during the summer of that year. Catharine returned home for school in September, suspending her research until she met with Dr. Richard Austin, of McMaster University. Dr. Austin works with endothelial cells, which are of a similar cell class to the lymphatic tissues Catharine was working on in Calgary. This enabled Catharine, Dr. von der Weid and Dr. Austin to collaborate and have her tissues from the lab in Calgary sent to Hamilton. Catharine explained that this is not only exciting for her, as it allowed her to continue her research from her hometown, but it was also a huge step in molecular lymphedema research as this was the first time it had been brought from Calgary to Hamilton.

where she placed 3rd nationally.

Specifically, Catharine’s research now So, what’s next for Catharine Bowman? focuses on particular natural compounds Like many students her age, Catharine is and their effectiveness in treating the waiting to hear back from five prestigious underlying molecular factors of lymphedema. universities, where she has applied to She is investigating the factors that cause Health and Life Sciences programs. In the lymphedema and how these natural meantime, she hopes to continue to advocate compounds influence the underlying for lymphedema patients through her “Make molecular functions of the lymphatic Noise for Lymphedema” campaign, and is system, as well as other factors in the body looking to hold fundraising and awareness that may be contributing to a worsening of events in support of lymphedema patients lymphedema. Whenever possible, usually when she has a break from school, Catharine and research. Catharine has high hopes for the future of lymphedema research. Not returns to Calgary to resume her work. only is she hoping to see an improvement in Catharine has presented her research the lives of patients, but is eager to see an at a variety of science fairs, earning her increase in understanding of the molecular international recognition. In 2014, she side of lymphedema from researchers, as competed in the Intel International Science well as some insight into its causes. As and Engineering Fair (ISEF) in Los Angeles.

In 2015, she made her second appearance Catharine eloquently stated, “the more that at ISEF in Pittsburgh, where she placed is understood in terms of basic research 4th in the world. At Sanofi Biogenius Canada, and background knowledge of a disease she placed 1st in Southwestern and its associated systems, the Ontario, advancing her to greater the chances of one the National Research day, hopefully, uncovering a I’m astounded Council in Ottawa, pharmacological solution.”

Benny Hua Benny Hua is 23 years old and is in the process of completing a Masters degree in Business Entrepreneurship and Technology at the University of Waterloo, following his four-year undergraduate degree in Kinesiology from the same Ontario University.

Benny, like Catharine, draws inspiration from his mother when it comes to his involvement with the lymphedema community.

Diagnosed with breast cancer in July 2012, Benny’s mom developed lymphedema in her left arm following her cancer treatment, which included chemo and radiotherapy and

a mastectomy. Though she is now cancer-free, like many others in her situation, she is faced with the challenge of learning to live with and manage her lymphedema through proper treatment.

In January 2015, the final semester of his undergrad, Benny got to work on his startup company, Node.

Node looks to create compression garments that work with the patients’ wants and needs, while simultaneously providing the medical grade compression required to treat lymphedema.

Node won funding at pitch competitions through the university, and after a brief restructuring phase, Benny is now looking to begin manufacturing his compression product.

In school, Benny learned that an important

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

B653_CLF_Pathways_Spg2016.indd 16

how supportive everyone in the community is... it’s amazing to see everyone working together.

facet of entrepreneurship is that, “you need to talk to people to find out what they want.” So, that’s exactly what he did. Benny surveyed his mom and other lymphedema patients to discover what they didn’t like about wearing compression. In response, Benny

Conceptual designs for Node’s compression product.

Spring 2016

3/8/16 9:06 AM

LYMPHEDEMA Your Best Choice for Lymphedema Care At Shoppers Home Health Care®, our caring, professional staff are available to assist you with all of your compression therapy needs. We have experienced, certified fitters on staff at select locations to measure and fit custom-made or pre-sized supports. A full range of Sequential Pumps and Pneumatic Sleeves are also available.

Please feel free to stop by one of our locations for more information on how Shoppers Home Health Care can provide you with the best in compression therapy care.

RED 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 B653_CLF_Pathways_Spg2016.indd 17

3/8/16 9:06 AM

began designing garments that aim to not only be more comfortable, but to be aesthetically pleasing as well.

When asked about his experiences working so closely with the lymphedema community, Benny had this to say, “I’m always astounded by how supportive everyone in the community is of each other. When you consider how little is known about the disease, it’s amazing to

see everyone working together and sharing what they know with one another.”

Benny wants to see a push in education and awareness in the medical community in order to see improved rates of diagnosis and an increased foray into lymphedema research, and he hopes for a future without chronic lymphedema. Benny is trying to build Node around the needs of the lymphedema

Victoria Lee Victoria Lee, 22, a recent graduate of Emily Carr University of Art and Design in British Columbia, is using her degree in Communication and Design to help the community in any way she can.

Communication design is a method of problem solving with an emphasis on conveying ideas and goals through communicative and digital technologies. In the past, Victoria has used her design skills to help local businesses and community projects, such as designing her University’s Arts Club Theatre’s 50th Anniversary brochure to promote art and theatre to under privileged youth. Currently, she works for Mogo Financial Technology, a company that leverages technology and design to provide financial help to millennials.

Helping people is ingrained in Victoria’s spirit, which is why she has chosen to use her spare time as well as her talents to create Uplyft, an online community for adults between 20-35 years of age, who are diagnosed with primary lymphedema.

Uplyft—named for the benefits of elevating the swollen limb as well as the benefits of lifting your spirits—is designed to shift perception through story telling, direct

patients to support groups, and provide support for patients who may be feeling insecure throughout their journey with lymphedema.

Uplyft began as Victoria’s undergraduate thesis project. She knew from experiences with her own diagnosis of primary lymphedema that some patients couldn’t find a personal connection with their doctors, and Screens from used this as a jumping off point for her work.

Uplyft web platform.

When she began her preliminary research on lymphedema, she found a surprising lack remote areas where accessibility may of research on the condition in general, but present an issue. Thus, Uplyft was born. especially on primary lymphedema. What Victoria insists that there is a great little research there was, focused on the need to educate the general public about physical symptoms of the condition, rather lymphedema. She says that spreading than on the social and psychosocial aspects the word about this condition to make that come along with the diagnosis. it well known is essential, because Victoria then began to interview it is very challenging for patients in Canada, the USA patients like herself and the Netherlands and A common and many others to found that a common complaint from all constantly have to complaint from all patients was that explain a disease patients was that there there was a lack of that visibly presents was a lack of support support resources, itself when there is resources, especially an immense lack of for young adults. especially for awareness around it.

Victoria understands young adults.

Recently, Victoria that since it is such a rare helped the BCLA with the condition, it is hard to find promotional campaign for their others who understand what 2015 conference and hopes that in the it’s like, and because swelling is future she can continue to speak about often visible, people feel isolated due to and advocate for lymphedema, and not poor self-perception and body image. Victoria be afraid to educate others. More inforwas able to find some personal relief in mation on Uplyft can be found by visiting reaching out to other patients, reassuring vleeway.com, and if you’d like to get in touch her that she was not alone in her condition. with Victoria, she can be reached on Twitter She made it her goal to make it easier for at https://twitter.com/vleeway or by email: other patients to connect to share stories, vleeway93@gmail.com. LP advice and offer support, especially in

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

B653_CLF_Pathways_Spg2016.indd 18

community, and he stresses that patient input is extremely valuable. He is currently in the early stages of production and is seeking feedback on current designs. If you would like to provide him with thoughts or opinions on how his garments should look and feel, he can be reached at benny@mynode.ca, or you can visit http:// www.mynode.ca for more information.

T

Spring 2016

w

3/8/16 9:06 AM

19-11-20

FITTED FOR LIFE INTEGRATED THERAPY SOLUTIONS FOR LIFE WITH LYMPHEDEMA

1

DECONGESTION CARE

2

DAYTIME MAINTENANCE

3

NIGHTTIME MAINTENANCE

Reducing limb volume by getting extra lymph out.

Compression bandages and wraps • JOBST® FarrowWrap® • Comprilan® • JOBST® Compri2

Maintaining reduction achieved with decongestion by wearing compression garments.

Custom-Made Garments • JOBST® Elvarex®

Mild compression applied while you sleep for a complete therapy.

Ready-To-Wear & Custom-Made Garments • JOBST® JoViPaK®

THERAPIES. HAND IN HAND. www.jobstcanada.com

19-11-2015 Pathways9x11 (.125 bleed)19 2.indd 1 B653_CLF_Pathways_Spg2016.indd

1-877-978-5526 2016-01-13 2:54 AM PM 3/8/16 9:06

Patient Perspective

Patience is a virtue

A story of how lymphedema transformed a family’s lives

By Debbie Ciotti-Bowman

M

y journey with lymphedema began in 2007 when I experienced the diagnosis of Stage 3 metastatic melanoma of my calf requiring the removal of the entire inguinal basin of lymph nodes draining my left leg. Thus began a transformation in my life and that of my family’s, leading to some interesting experiences....

Debbie Ciotti-Bowman and daughter Catharine Bowman.

Issues with leg swelling cropped up quickly; I experienced congestion and a painful lymphangitis on the inside of my thigh near my knee. I later developed foot swelling and another painful lymphangitis over the top of my foot/lower calf. This was an eye-opener, as I had always been in good health! Interestingly, to this day, after those first bouts of lymphangitis, my foot remains swollen to varying degrees, and the area at the inside of my thigh just above

the knee will be the first painful area when I’m having a “bad day” with my lymphedema or am on the verge of contracting cellulitis.

Trying to find the help that could administer and teach me the required physical treatment to manage the lymphedema was quite a challenge. I couldn’t believe that in 2008, the only type of treatment to stay well with lymphedema was either hard to find within my region, or was not covered by insurance or affordable to me on a regular basis!

I’m incredibly grateful for a physiotherapist who opened a not-for-profit, “Cancer Rehab” clinic (Hamilton, Ontario) for two afternoons per week, staffed by physiotherapists and a kinesiologist. These health care professionals were concerned with cancer patient rehabilitation, including teaching the “basics” of lymphedema management, as they too recognized the scarcity of regional lymphedema resources and lack of government financial support for lymphedema treatment. In 2008, this was a warm and welcoming haven where we all learned about recovery, adapting to our new situations and supporting each other! Unfortunately this clinic closed after only 4.5 years in operation. The necessity of compression stockings and bandaging became clear, and I experienced the benefits

of a prescribed exercise program combined with compression bandaging of my leg.

It was around this time that my 9-year-old daughter Catharine Bowman, started to say things to me each day like, “Mommy I love you and some day I am going to cure you,” often moving me to tears with the intensity of her expression...

Time has now passed, and I have learned that to manage my lymphedema I must: 4 Wear compression stockings every l

day of my life (summers are hot), and a waist high, night leg garment every night (always hot). There are times that my leg acts as the “barometer of my life”!

4 Not wait “a day or so” to see if l

the red patch on my leg will clear up on its own (a mistake that makes me very sick the next day), but get the benefits of starting my cellulitis antibiotics right away (an unforgettable “aha” moment!)

Debbie Ciotti-Bowman is a retired nurse from Hamilton, Ontario and a current board member of the Lymphedema Association of Ontario. She wishes to see improved provincial health coverage for the management of lymphedema, and hopes for significant treatment developments that will make the physical regimes required for lymphedema care easier.

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

B653_CLF_Pathways_Spg2016.indd 20

Spring 2016

3/8/16 9:06 AM

4 Wrap my leg with compression l

bandages and exercise with a program that is designed with physiotherapy and kinesiologist assistance. This combination balances the increased blood flow to the leg muscles with the ability of my leg lymph circulation to remove new lymph accumulation from the leg. Over a long period, the optimal order of exercises has been worked out.

4 Balance daily movement of my legs l with periods of lying flat to relieve gravity’s effects of congestion on my lymphedema leg. Caring for this leg is time consuming, but it’s the way to maintain leg comfort and manage the lymphedema.

4 Keep my muscles healthy, and breathe l deeply to keep lymph circulation going.

4 Avoid certain foods, such as excess l salt and anything that contains “bad fats” to avoid increased leg congestion and lower abdominal swelling.

4 l Consistently take care of my leg and myself, so that I remain able to carry out the physical management and movement required to care for my leg in the future, when I’m older!

Gradually, I’ve found the therapy assistance I need, and am blessed with some wonderful contacts and an extremely loving family.

A very meaningful segment of our family’s journey with this condition has been watching our daughter develop into a compassionate, caring science researcher and lymphedema advocate. I am astounded every day by the way Catharine overcame her worry as a sensitive youngster watching me adapt, and transformed it into a positive energy combining her love of science with her deep desire to tackle a huge question such as: “Is there a pharmacological treatment or even a cure for lymphedema?” As a teenager she’s poured her heart into developing her own research proposals, searching for funding and promoting lymphedema awareness. She has been encouraged and supported by Dr. Pierre-Yves von der Weid of the University of Calgary and by another senior scientist at Hamilton’s McMaster University as she carries out molecular research investigating the possibilities of pharmacological assistance for this chronic condition. She recently had the opportunity to discuss her work with Dr. Stanley Rockson at the BC Awareness Day in Vancouver, who also encouraged her to continue to pursue her particular path of research inquiry.

A very meaningful segment of our family’s journey with this condition has been watching our daughter develop into a compassionate, caring science researcher and lymphedema advocate.

So, it’s been an interesting journey while I’ve dealt with the challenges of a life-long condition and the family has taken up new journeys or ways of looking at things. I think we’ve all learned that “sometimes the things we can’t change, end up changing us”—for the better! LP

YOUR THOUGHTS If you would like to share your story and advice with others, contact us via email:

canadalymph@live.ca Be sure to put “Personal Perspectives” in your subject line.

TION A R IST N REG OPE W NO

2016 Asia Pacific Lymphology Conference New Networks – New Solutions 26-28 May 2016 Darwin Australia Hosted by

integrating the 11th Australasian Lymphology Association Conference and the 6th International Lymphoedema Framework Conference

Email: info@ 2016asiapacificlymphologyconference.com www.2016asiapacificlymphologyconference.com

Spring 2016

B653_CLF_Pathways_Spg2016.indd 21

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

3/8/16 9:06 AM

Ask the Expert

A Panel of Experts answer your lymphedema questions

A snap shot from the 2015 National Lymphedema Conference

By Dr. Moffatt, Dr. Towers, Dr. Granzow and Dr. McNeely

Q

For someone living with lymphedema—do you recommend wearing gloves during all food preparation (e.g. handling raw meat, raw egg mixtures etc.) or just hand washing after?

Moffatt: I think hand washing is probably absolutely fine, especially when you consider that medical practice revolves around meticulous hand washing. One thing I would say… avoid cutting your fingers with the knife!

Q

Are there any medications that might increase lymphedema swelling temporarily (antihistamines, combination cold medicines)?

Moffatt: Yes, lots of medications, particularly antihypertensive medicines and drugs like calcium channel blockers have a 60% rate of swelling when you start. Corticosteroids, which may be prescribed for a number of conditions can do two things: sometimes they increase swelling, but sometimes, paradoxically, we use them to treat patients who have particularly aggressive lymphedema due to recurrent cancer and swelling can go down. Drugs for epilepsy as well. In fact, if you look at the Drug Codex that we did in the UK, most drugs report that you will have edema occasionally occurring.

That said, there are the main groups: corticosteroids, non-steroidals and antihypertensives that are the ones that are the big ones for affecting edema.

Q

We have been told that day garments should not be worn at night due to “nocturnal dip” (a drop in blood pressure and skin resistance) that can lead to tissue damage. Better to use night garments...is that true?

Moffatt: I’m not sure there is any evidence of that at all. I think that when you’re thinking of any sort of compression, your main concern is to make sure you have good arterial flow. To be honest, when you go to bed at night the only thing you’re affecting is gravity, so I think as long as that garment is not a very high level compression I see no issues about safety. It’s often the case that patients cannot tolerate a higherpressure garment at night-time.

In fact, some of my patients wear higher-pressure garments all the time, so I’m not sure that there’s any harm in that at all.

Towers: I think it is basically a matter of need and comfort.

Granzow: We find that the flat-knit garments can be worn day and night, with no problem at all. It seems that people have more problems with the round knit.

Towers: Correct, you don’t want a circular knit garment on your leg at night, but flat-knit is fine.

McNeely: The problem with daytime garments, especially the circular knit garments, is that they can bunch and roll down. If this happens at night, the rolling may cause a tourniquet effect on the limb and occlude

vessel flow. This may impede lymph flow out of the limb causing increased swelling and, if really tight, can compromise arterial flow (and the limb will start to ache). The bunching may cause skin irritation and breakdown at the joint. Most people will wake up due to discomfort, and adjust or remove the garment.

Where I have seen problems is with cancer survivors who are taking sleep aids. Those who may fall asleep by chance with the garment on and sleep so deeply that they do not realize there is an issue with the garment.

The garments are designed for daytime wear. Seeing problems develop secondary to wearing the garment at night reinforces to me the importance of why the garments should not be worn overnight.

Q

Has anyone looked into incorporating essential oils into lymphedema treatment, as most oils are anti-bacterial or anti-fungal?

Moffatt: I think there is some evidence from places like India where this type of treatment for lymphedema is actually happening. There is growing evidence around Tea Tree Oil as an antiseptic. In terms of essential oils, the trouble we have with answering all of these questions is: what are we trying to show in using them? Essential oils are used for lots of reasons, but are we trying to show that they will improve skin conditions, or that they will relax the patient? An important thing to mention however is that certainly not all oils are safe. Some oils can be quite irritating to the skin. Another thing to worry and be careful about would be allergic reactions.

LP

Panel of Experts was a popular session featured at the National Lymphedema Conference in Calgary, Alberta in the fall of 2015.

The above questions and answers are just a selection from the transcribed session and featured Dr. Christine Moffatt (England), Dr. Anna Towers (Quebec), Dr. Jay Granzow (California) and Dr. Margie McNeely (Alberta).

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

B653_CLF_Pathways_Spg2016.indd 22

Spring 2016

3/8/16 9:06 AM

B653_CLF_Pathways_Spg2016.indd 23

3/8/16 9:06 AM

Helpful Suggestions

Hints and Tips Keeping track Reporting changes in your lymphedema to your healthcare provider is a key component of lymphedema risk reduction.

For many, keeping a journal is therapeutic and can also be a great way to keep track of the condition of your limb. Make note of any changes in size, skin condition, sensation, temperature or colour.

Gaining confidence The self-esteem issues that come along with lymphedema can mean that exposing your limb and your compression garments can be daunting, but covering it up can sometimes be a hassle.

If exposing your limb is something that bothers you, it may help to start small.

You can begin by wearing shorts or a t-shirt around the house, and then build up to running an errand, like grocery shopping, and eventually work yourself up to revealing your compression garment at a social gathering. Be patient and practice lots of positive self talk! It takes time, there is no need to rush yourself into an uncomfortable situation.

Keep hydrated As the snow begins to melt away, itâ&#x20AC;&#x2122;s once again important to remember that warmer temperatures can present

problems like increased swelling and risk of infection. One thing that can help your body regulate temperature is staying hydrated. If you have a smartphone, you can check out the app store for apps that will remind you to drink enough water. Some of these apps are really cute and fun!

One that you can look into is called Plant Nanny, which sends notifications to your phone to remind you to hydrate and keep your virtual plant alive.

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.

Compression with

Flair

Place your Wear Ease order before April 30 and receive 25% off.

Use coupon code: WE25PATH

Recovery from

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

B653_CLF_Pathways_Spg2016.indd 24

To place your order: Email: phyllis@wearease.com Call: 866-251-0076 Fax: 208-445-0957 www.wearease.com

Spring 2016

3/8/16 9:06 AM

Research and Community

Did you know?

Cure for fat tissue disorders sought Thanks to the generosity of a 1.5 million dollar donation from University of Arizona alumna Felicitie Daftuar, Tucson will now be home to the TREAT program! TREAT (Treatment, Research and Education of Adipose Tissue) will be led by internationally renowned endocrinologist Dr. Karen Herbst and will focus on the study of potential genetic, metabolic and hormonal causes behind the accumulation of atypical fat tissue. There is now a place where actual studies will be focused on lipedema, Dercum’s Disease and Madelung’s! This is an incredible step forward in finding a cause, treatment and someday possibly even a cure for lipedema. To learn more about TREAT check: www.fatdisorders. org/latest-news/214-new-research-center-foradipose-tissue-disorders-to-launch-at-ua-tucson.

n

N

om

Ap ina ril tio 18 ns ,2 01 6

ALNET – Alberta Lymphedema Network (ALNET) is a new province-wide collaboration that aims to improve patient care for those who are at risk of, or suffering from lymphedema.

In support of establishing this provincial

multidisciplinary research and education program on lymphedema, and more broadly the lymphatic system and lymphatic diseases, the Dianne and Irving Kipnes Foundation has partnered with the University of Calgary, Cumming School of Medicine, the Calvin, Phoebe and Joan Snyder Institute for Chronic Diseases, the University of Alberta, Faculty of Medicine & Dentistry and Salutaris Centre (Edmonton). ALNET engages interested researchers, physicians and other health care providers, as well as students and post-doctoral fellows to better study the lymphatic system. ALNET’s goal is to ensure lymphedema does not stay a condition that is under-recognized, under-studied and under-treated. For more information contact: knarine@ualberta.ca; (780) 492-9883.

Over two decades of service Saskia Thiadens, a prominent leader in the lymphedema community worldwide for over two decades of service has stepped down from her position as Executive Director. Saskia, a registered nurse, opened the first lymphedema clinic in the United States (San Francisco)

in 1987. Recognizing the desperate need for awareness education and an effective treatment for lymphedema, she founded the non-profit National Lymphedema Network (NLN) in 1988. Saskia has worked tirelessly all these years to advocate for patients, provide education for health professionals and promote research to support proper treatment and care. Her biennial conferences are legendary, with more than 900 delegates attending the most recent World Congress I want to stay of Lymphology in 2015. Although she will be in my own home. with us and greatly missed, her legacy remains the impact she has had on the lymphedema community will never be forgotten.

Trudeau letter

The Canadian Lymphedema Framework and all the provincial associations endorsed a formal letter addressed to The Honorable Justin Trudeau, requesting the new federal government to make the required changes to the Canada Health Act that will provide better funding for lymphedema treatment in each province. A copy of the letter can be found at www.canadalymph.ca

canadacares.org

O

pe

Canada Cares 2016 Awar ds Caring Communities

In partnership with

Caring Communities

Caregiver Friendly Workplace Award

In partnership with

INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES

LP

To find out more about our Regional Recognition Awards for Family Caregivers and Professional Caregivers and for our awards criteria for 2016, visit canadacares.org/ awards.

In partnership with

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

Spring 2016

B653_CLF_Pathways_Spg2016.indd 25

B687

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

3/8/16 9:06 AM

Education

Letters....

Canadian and International Events May 6–7, 2016 Lymphedema Association of Saskatchewan Saskatoon, (LAS) Symposium. Two-day AGM and Saskatchewan Lymphedema Symposium held that the University of Saskatchewan,Academic Health Sciences Building.

Dr. Stanley Rockson, Dr. Andrea Cheville and Jill Allen are confirmed guest speakers. For more information, visit the LAS website. n www.sasklymph.ca 2016 Asia Pacific Lymphology Conference.

May 26–28, 2016 Darwin, Australia Organized jointly by the ILF (International Lymphoedema Framework) and the ALA (Australasian Lymphology Association). Online registration is now open. Be sure to sign up for free as an ILF affiliate (www.lympho.org) to receive a discounted registration rate. n www.2016asiapacificlymphologyconference.com Aug 31–Sep 4, 2016 Dallas, Texas

Registration is now open for the 12th National L ymphedema Network (NLN) conference: Shaping the Future through Commitment, Evidence and New Frontiers. n www.lymphnet.org

2016 Dates Training and Certification Programs.

Courses are offered by various educational schools Canada and the United States for qualifying healthcare professionals. Some provincial lymphedema associations also organize or host educational courses. We encourage you to refer to the websites of our advertisers and the individual provincial associations for specific dates and locations.

Letters to the Editor... and elpful ver y h ost s y a w in v gp ath rson li e p I find P a As and ative. edema inform lymph am so h it , w s r, liti I cance f cellu o ts u e, and bo agazin chronic , our m y d a . Sadly re t alone o glad to n m d a o by that I dersto k n ow misun is a als edem fession lymph r lth pro a e -h r -fo you y k you e. o man Congratu n to a th t , x issu lations to o my ne ed. S all! d to lu c The latest rd in for wa issue of I look Pathways work! magazine y, is very impre Crowle Scotia ssive, as Karen , Nova w a re o g s the provin la G w e cial insert N s!

Keep up th e great w ork!

Rachel Pri tzker, Lymphed ema Asso ciation of Quebec

We would love to hear from you...

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

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

Platinum Sponsorship

Our S elkirk Breas Supp t Can or t gr cer oup f m a ga inds t zine to he b e we inform ll writ ative, ten, varied ver y c and urren t. Tha produ nk yo cing s u for uch a th o s e suppo af fecte d and t by lym r t to heir fa phed milies ema .

Karen St a rk , Selkir k, Ma nitoba

C

M

Y

CM

MY

CY

CMY

K

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

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

Silver Sponsorship

Lymphedema Association of Ontario

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

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

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

B653_CLF_Pathways_Spg2016.indd 26

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

Spring 2016

3/8/16 9:06 AM

PrintsLFWŠpress.pdf

1

1/14/16

8:19 AM

J

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

C

M

Y

CM

MY

CY

CMY

K

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.

B653_CLF_Pathways_Spg2016.indd 27

3/8/16 9:06 AM

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

B653_CLF_Pathways_Spg2016.indd 28

150601127E Coban 2 Layer Compression System AdNew size.indd 1

3/8/16 9:06 AM

2015-07-07 12:18 PM