Pathways Fall 2012 (Volume 1, Issue 3)

Canada’s Lymphedema Magazine

Pathways

FALL 2012

Empowering patients and professionals

International conference highlights

Children’s camp for lymphedema A collaborative approach

W H A T ’ S I N S I D E … Ask the Expert I Donning aids I Compression garment choices I Impact of massage therapists

3M™ Coban™ 2 2 Layer Compression System

Please Recycle. Printed in Canada. © 2012, 3M. All rights reserved. 3M and Coban are trademarks of 3M. Used under license in Canada. 1202-00334E

Lymphedema

Lymphedema Therapy

Maintain Ma a ta

Mobility While Reducing Edema e a A Breakthrough for Patients and Clinicians • Clinically effective volume reduction without the bulk of traditional reusable bandages • Unparalleled comfort, mobility and function enabling patients to carry on with everyday life • New application techniques that make wrapping sessions less taxing for clinicians and patients “I just felt my leg was so light I didn’t know the bandage was there. It was easier to do things. I would never want to go back to the old system.”

– Patient P7, Canada

“It has really amazed me. When it came off the other day I said, ‘look, I have knuckles on my hand!’. I haven’t seen them for 15 years.”

– Patient P5, Canada

To learn more, visit

www.3M.ca/coban2layer Available in Canada from:

Skin & Wound Care 3M Canada

Health Care

D-41453 Neuss, Germany P.O. Box 5757 London, Ontario N6A 4T1 Canada 1 800-364-3577 www.3m.ca

Ms G, breast cancer survivor, lymphedema patient, demonstrates the flexibility and function of 3M™ Coban™ 2 Compression System.

Editor’s Message

A Message of Hope... ontpellier is a beautiful and historic city on the Mediterranean coast of France, situated halfway between Spain and Italy. It boasts a world famous medical school, one of the oldest in the world still in operation, with nearly 7,000 university students enrolled in its medical program today. Chartered by the Catholic Church in 1220, the Faculté de Médecine is located in the ancient halls of a medieval monastery and Episcopal palace. Some of the earliest anatomical illustrations and accounts of lymph vessels and lymph nodes are housed in the library at the University of Montpellier. It was certainly fitting that this city was chosen as the venue for 450 attendees to gather from around the world for the 4th International Lymphoedema Framework (ILF) conference this past summer.

In addition to the three-day conference, I attended two days of ILF strategic planning meetings. I consider it a privilege to sit on the Board of the ILF because it gives me a unique perspective—what I call the bird’s eye view—of what is happening in lymphedema care around the world.

The pre-conference meetings were held in conjunction with Handicap International, an organization addressing the control of lymphedema in developing countries.

This joint meeting allowed us to learn from each other and start discussions about partnering for global awareness events and an

M

Anna Kennedy chats with Christine Moffatt, Chair of the International Lymphoedema Framework.

international lymphedema prevalence study.

Though some critics would say that our knowledge of the anatomy of the lymphatic system may have changed little, since the first descriptions in the 17th and 18th centuries, attending the conference and meetings verified the tremendous strides that lymphedema research has made in the last ten years alone. This gives me tremendous hope for even greater knowledge and advancements just around the corner.

We have shared this message of hope with you in the highlights of the international conference. Most inspiring of all was visiting the International Children’s Camp held concurrently during the ILF conference, just outside the city limits.

I congratulate Dr. Isabelle Quéré for not only co-hosting the ILF conference in her city but simultaneously running the children’s program. I hope you will enjoy reading both Isabelle’s camp perspective and Kim Avanthay’s reflection on participating in the program with her son.

This gives me tremendous hope for even greater knowledge and advancements.

As well in this issue we include an article from Melissa, a lymphedema patient, and her therapists, Dorit Tidhar and Maureen Adelman, whose account demonstrates how collaboration between a patient and her clinical team impacts the best outcomes for lymphedema treatment.

The role that compression plays in lymphedema management can’t be emphasized enough and so Jean Ann Ryan’s article outlines that collaboration is also required for choosing the appropriate garment. Leda Raptis reviews all the aids available to help you get your garment off and on—including her own creative solution of sewing your own slider.

Lastly, thanks to Robert Harris for his article on how registered massage therapists trained to provide lymphedema treatment in Canada are also contributing in other ways to the lymphedema community. His article demonstrates yet one more way that collaboration among all of us is essential for the improvement of lymphedema care. LP

Anna Kennedy Ly m p h e d e m a P a t h w a y s . c a

3

Contents

Lymphedema

Pathways Empowering patients and professionals

Fall 2012 ■ Volume 1 Issue 3

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

Editorial Board David Keast MD FCFP Winkle Kwan MD FRCPC Martina Reddick RN CDT Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT Editor Anna Kennedy Editorial Assistant Shannon Moore Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. All material is subject to Editorial Board approval and inclusion does not constitute an endorsement nor 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 4161 Dundas Street West, 1st Floor Toronto, Ontario M8X 1Y2 Telephone: 416-410-2250 Email: canadalymph@live.ca www.canadalymph.ca Cover Image: Alexandre Marc Photographies Some photos in this issue are courtesy of L. McFetridge, L. Raptis, D. Tidhar, R. Harris, BSN-Jobst, Doff n’ Donner, High Desert Pharmaceuticals and Valco.

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

5

International Lymphoedema Conference Highlights from France, June 2012 Research, diagnosis and treatment advances are starting to make good strides as reported from the international stage.

Lymphedema Children’s Camp Offers therapeutic educational program An interview with the program director plus reflections of a mother and son’s adventure to the International Camp.

Donning Aids for Compression Making adherence to treatment easier

Patients have many options for aids to help put on and take off compression garments, including sewing their own slider.

Managing My Lymphedema Patient and therapists’ perspectives

Successful outcomes are based on collaborative team-based approaches between the patient and the lymphedema clinic team.

10 13 15

Compression Garments A fitter’s perspective on consumer choice

There is a myriad of compression garments in the market place and trusting your fitter is the first step to making informed choices.

Massage Therapists Make an Impact on lymphedema management in Canada

Massage therapists are playing key roles beyond patient care and are getting involved in research, education and patient advocacy.

20 22 Fall 2012

2012 Conference Highlights

International Conference

The CLF shares the highlights of the 4th international

conference hosted by the International Lymphoedema

Framework (ILF), Montpellier, France, June 2012 Launch of the ILF Position Document on Compression Therapy The International Lymphoedema Framework released the first two of a series of documents on aspects of lymphedema practice that will contribute to the second edition of the Best Practice document. A summary of 12 planned documents will be available in 2014, all based on a comprehensive systematic literature review undertaken by the American Lymphedema Framework Project.

The Compression Therapy document reflects a combination of research, clinical practice from different locales and the newest physiological evidence. This document reflects changes in thinking.

The effects of compression on both the lymphatic and the vascular circulatory systems are discussed with suggestions

that compression can be used on patients with some arterial compromise. In-depth concepts of pressure and stiffness, and how types of material work are presented.

Experts (Partsch and Moffatt) now believe that static and dynamic stiffness are more important factors than just pressure.

Current evidence supports compression as the single most important element of treatment, both initially and long-term.

Compression systems should not, however, impede function or overall mobility of the patient. The document presents three interesting new arguments: 1) graduated compression profiles are rarely achieved in practice according to Laplace’s Law, 2) traditional approaches to the filling of enhanced skin folds may produce a negative pressure, and 3) excessive foam padding reduces the compression applied to a limb.

Compiled by Pamela Hodgson and the Canadian Lymphedema Framework’s Executive Committee.

(Left to right) Dr. David Keast, Jill Allen, Anna Kennedy, Pamela Hodgson, Rachel Pritzker, and Dr. Anna Towers.

Fall 2012

Included in the document is a chapter addressing the challenges of bandaging in resource poor countries, such as India.

Their innovative solutions to lymphedema treatment can be an inspiration to us all.

The full document can be downloaded in PDF at www.lympho.org A position document on surgical interventions for lymphedema This position document addresses the often controversial issue of surgery.

Where conservative, coordinated treatments fail, circumferential suction assisted lipectomy (CSAL, also known as liposuction), performed by a specifically trained surgeon can be effective and safe. Microsurgical techniques such as lymphatico-venous anastomoses are also developing, but further work is needed to effectively define indications for such surgery. In the US the evidence for surgery is currently considered insufficient to justify reimbursement. Conservative decongestive therapies remain the mainstay of lymphedema treatment and surgical options do not eliminate the need for compression garments which must be worn immediately after surgery and continued for life.

Ref: www.lympho.org

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

5

Global Strategic Alliances The ILF hosted a two-day strategic meeting preceding the conference, in conjunction with Handicap International. The agenda addressed global issues and morbidity control of lymphedema in developing countries. Plans for an international lymphedema prevalence study and joint global awareness events were key outcomes.

smartphone application, LymTracker, that Emerging and future treatments – will allow patient self-monitoring of limb genetics and molecular therapies volume using an iPhone or iPad. Dr. Stanley Rockson of Stanford University discussed biomarkers and molecular theraThe role of genetics in classifying peutics. From animal models and tissue various types of lymphedema samples taken from lymphedematous limbs, Recent genetic studies reveal a predisposiscientists are beginning to identify genes tion to edema in persons who develop implicated in many lymphatic dysfunctions. lymphedema following cancer treatment Using protein biomarkers, researchers may or other trauma. HGF/MET pathway be able to detect stage 0 lymphedema mutations are one example. Dr. Vaughan or a genetic predisposition Keeley of the Royal Derby to lymphedema in at-risk Hospital, UK discussed the individuals. In addition, we Current role of genetics in the mainmay be able to overcome evidence tenance and growth of lymphedema functional systems including lymphatic abnormalities with targeted supports vessels and how this helps agents, for example those compression explain why lymphedema that enhance VEGF-R3. as the occurs when it does. CliniThese agents may enhance single most cians and geneticists, such lymphangiogenesis that may important as Dr. Peter Mortimer and also reverse lymphedema. element of Fiona O’Connor, are develFinally Dr. Rockson is also treatment, oping detailed phenotypic conducting exciting research classification of syndromes on the use of anti-inflammaboth initially that include lymphedema. tory medication to slow and long-term.

Eventually we will have the progression of stage II classifications from genetic lymphedema. testing as more mutated genes are being For current information consult ‘Literature discovered, e.g., VEGFR3 mutation in Watch’ in the journal Lymphatic Research Milroy’s disease and FOXC2 mutation and Biology. in the distichiasis syndrome. Genetic testing has shown that yellow nail Smartphone application for syndrome is probably a secondary condition limb volume measurement rather than a primary genetic disorder.

The ILF conference “most original work” Genes that can predispose an individual prize was awarded to Lachlan McFetridge, an Australian graduate entry medical student to develop the often misdiagnosed problem of lipedema are also being investigated. with a PhD in electronic engineering. He is one of several students undertaking the Lymphatics Specialist elective at Flinders University. His oral presentation, “Photogrammetry for limb volume measurement” shows the use of high resolution portable cameras and computer imaging techniques to calculate limb volume from several views of a limb.

Markers on the limb allow the software to adjust for changes in distance and angle.

McFetridge is developing an ingenious

6

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

A prospective surveillance model in the follow-up of breast cancer patients There is increasing evidence that early identification of subclinical lymphedema followed by intervention may decrease the rate of lymphedema progression. Nicole Stout, a physiotherapist and researcher from Bethesda USA, also argued that such a surveillance model may significantly decrease the costs of lymphedema care compared with traditional follow-up, in the order of $636 for one year for the surveillance model and $3124 for traditional care.

Fall 2012

A Complete Solution for Lymphedema

ComprilanÂŽ

LeukotapeÂŽ K

and JOBSTÂŽ ElvarexÂŽ

Edema Reduction & Maintenance ComprilanÂŽ is a short stretch compression bandage suited to the prevailing drainage situation to maintain the edema removal achieved in manual lymph drainage.

LeukotapeÂŽ K, neuro-proprioceptive tape, lifts the skin to decongest lymphatic fluid and blood, which improves circulation in the affected area.

JOBSTÂŽ ElvarexÂŽ offers a wide variety of medical compression garments to help reduce the volume and help maintain the shape of the limb. Available in many styles and colours.

Call us today! BSN Medical offers educational sessions across Canada.

"3. -EDICAL )NC s !UTOROUTE ,AVAL 7EST 3UITE s ,AVAL 1# #ANADA s ( 0 7 4EL s &AX

JOBSTÂŽ a brand of

Comfort, Health & Style!

For more details and free PDFs, consult the CANCER journal April 2012 Supplement http://onlinelibrary.wiley.com/doi/10.1002/ cncr.v118.8s/issuetoc Gains in the fight against filariasis Lymphatic filariasis is a tropical parasitic disease that leads to disabling lymphedema and hydrocele. Worldwide, approximately 900 million persons are at risk and 65 million persons suffer from complications of filarial infestation. Dr. Pierre Brantus of Handicap International, an NGO specialized in disabilities, presented an optimistic view of our capacity to control this condition in third world countries by administering preventive anti-filarial drugs. Prevention programs using relatively cheap and effective one-dose medication have made a significant impact to date.

The International Lymphoedema Framework plans to partner with Handicap International on global awareness events and an international lymphedema prevalence study. http://www.handicap-international.org/ Different pressures for arms and legs, and expanded use of velcro devices Dr. Robert Damstra presented findings from a study to determine optimal pressures for multi-layer compression bandaging. They found that compression applied to treat arm lymphedema is more effective at lower levels of compression (30-40 mmHg) while for treating legs, a higher level (4060 mmHg but no higher) is more effective.

In another study to be published soon,

8

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

Damstra’s group used the Circaid compression device, Juxtafit in the intensive treatment phase. Compared with a traditional bandaging system (Trico), the adjustable Velcro device resulted in greater edema reduction after two hours and 24 hrs. The device has lower dynamic and static stiffness levels and adjustable Velcro fasteners that patients were taught to adjust as needed. http://www.ncbi.nlm.nih.gov/pubmed/ 22233613 Chronic care model for lymphedema Several presenters suggested lymphedema treatment should encompass the chronic disease model where practitioners in the health care system and in the community interact productively with informed patients to gain improved outcome. Robert Damstra, MD PhD, described a comprehensive lymphedema service in the Netherlands which uses an interdisciplinary health care approach, a focus on communication, self-management and use of measurement instruments to detect clinically relevant improvements that can benefit from diagnostic and therapeutic interventions.

The ultimate goal is self management with support. Patients are treated in a dedicated clinic in the acute phase, followed by transition to ambulant care and self management in the maintenance phase. http://www.lymphormation.org/journal/ content/0201_guidelines.pdf A focus on children with lymphedema Children were a focus at this ILF conference as highlighted elsewhere in this issue. A lymphoedema children’s camp was initiated

by Dr. Isabelle Quéré and her team who

treat children and adolescents at the hospital in Montpellier France. A short film of the children’s experience at this year’s camp (that coincided with this conference) was both emotional and inspirational. Christine Moffatt’s quality of life study further emphasized the psychological as well as physical impact of lymphedema on children.

Penny Sanderson, a nurse from Mercy Health Lymphoedema Clinic, Melbourne Australia, presented their collaborative paediatric service integrated with the adult lymphedema clinic to ensure a seamless service transition as children grow into adults. She stressed the importance of dealing with psychosocial issues, taking the time to develop trust, being flexible, involving the young person in the treatment plan and letting the youth set the pace while encouraging a sense of personal power and control.

Manual Lymph Drainage (MLD) – what is its place in the management of lymphedema?

Should all lymphedema patients receive MLD as part of decongestive therapy?

The consensus seemed to be no – not all patients need it, have access to it, and it is costly both to the patient and the health care system. In the UK, issues of reimbursement have led to a call for a review of the evidence concerning MLD in treating Breast Cancer Related Lymphedema (BCRL).

To date the evidence overall is equivocal. The literature states that MLD improves lymphatic contractile function, improves quality of life, decreases capillary fragility (lipedema) and decreases tissue fluid levels.* However, Devooght reported that MLD applied after

Fall 2012

axillary dissection for breast cancer, in addition to education and exercise, has no effect on the prevention of lymphedema when compared to exercise and education alone.

Also reporting on the effect of MLD used in conjunction with multilayer compression bandaging or intermittent pneumatic compression to treat BCRL, Forner-Cordero found no greater reduction in the group with MLD. MLD may be a better option for truncal, breast and other types of edema. Investigation is needed to determine the optimum pressure range provided by therapists and effectiveness of various methods of MLD. Prof. Terrance Ryan noted that the touch of MLD stimulating the skin, in itself effects a direct connection to the brain, stimulating endorphins, which helps patients heal and feel better.

*Abstract: http://www.ncbi.nlm.nih.gov/ pubmed/22784598 Therapeutic innovation – for those with lymphedema and those at risk Prof. Neil Piller identified two different needs: 1) improved treatment options for those with lymphedema, and 2) improved risk reduction for those at risk of developing lymphedema. We need to encourage pre-operative identification of high-risk patients, promote patient education and independence and encourage innovative technologies and techniques. Prof. Piller stressed the importance of measuring and presenting outcomes of our innovations (like the writing up and publication of case reports), something that most health professionals do

not do often enough. We need to assess cost/benefit and determine how our interventions can lead to better outcomes. He encouraged accurate, objective and appropriate measurement of what we do, the use of international guidelines and consensus documents, and participation in minimal datasets and international research networks.

Conclusion The overall energy of the International Lymphoedema Framework conference was extremely high. Attendees left with a feeling of hope that research, diagnosis and treatment advances were starting to make good strides and that through international collaboration (at events such as this) and partnerships (with international organizations such as Handicap International), our shared vision of improved lymphedema care around the world is definitely within reach. LP

MEDICAL COMPRESSION STOCKINGS

GĂš Ăš Ăš Ăš Ăš Ăš Ăš Ăš Ăš Ăš Ăš Â? Ăš GĂš#

Ăš

Ú Ú Ú Ú Ú GÚ ¨ Ú Ú Ú Ú Ú ¨ Ú

regulatin g

n-allergic no

Micro ber ti

Motion is Life: www.bauerfeind.com

Fall 2012

for

l w e a r i n g co

m

op

ma

latex free ki

nd t

ki

n

a im

t

Galien 45==Ă&#x161; Ă&#x161;GĂ&#x161;& ?Ă&#x161;* ?Ă&#x161; Ă&#x161;GĂ&#x161;H7L 5A2 ( Â? Ă&#x161;& Ă&#x161;[78=\Ă&#x161;95<¨<;;<Ă&#x161;GĂ&#x161; Ă&#x161;& Ă&#x161;[78=\Ă&#x161;95<¨<;<8 ( Â? Ă&#x161;-

Ă&#x161; Ă&#x161;4¨;::¨95<¨<;;<Ă&#x161;GĂ&#x161; Ă&#x161;-

Ă&#x161; Ă&#x161;4¨;::¨95<¨<;<8 > >

/ - Â?Ă&#x161; Â? ?Ă&#x161; Ă&#x161; Ă&#x161; Â? ?Ă&#x161;

¨ Ă&#x161; Ă&#x161; Ă&#x161; Ă&#x161; Ă&#x161; ?Ă&#x161; Ă&#x161; Ă&#x161; Ă&#x161; Ă&#x161; Ă&#x161; >

cl

Â&#x20AC; & Ă&#x160; Ă&#x160; Ă&#x160; Ă&#x160; Ă&#x160; Ă&#x160; Ă&#x160; Ă&#x160; Ă&#x160; ?

NEW

o t he s

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

9

Children’s Camp

A therapeutic education program

We asked Dr. Isabelle Quéré to tell us about the first International Lymphoedema Children’s Camp, held in Montpellier, France June, 2012 Who is responsible for the project?

The Children’s Camp program is administered by the vascular and lymphatic medicine department that I run in Saint Eloi University hospital, Montpellier University, France. Beyond the academic hospital-based administration of the program, the Children’s Camp project is primarily the result of a ten year close collaboration between the Association Mieux Vivre le Lymphoedeme (a national support group of patients in France), my team, and more recently the International Lymphoedema Framework.

Please share the history with us.

The story of the lymphoedema Children’s Camp began five years ago, in 2008, with a first Children’s Camp week-end in Montpellier. As a department specialized in diagnostic and treatment of vascular and lymphatic diseases, we developed a dedicated service for children and young people with lymphedema as it became apparent that they had special needs.

Children were very happy to meet each other; they became “lymphedema friends”.

10

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

KEY OBJECTIVES 1) To implement a structured therapeutic education program for children and their families Specific objectives and tools had been defined by our previous experiences during weekend camps and on the basis of a qualitative research study of the psychological and social repercussions of lymphedema in children and young adults that we had previously conducted.

2) To produce video tools to report on the experience of lymphedema in children and to provide useful tools to the children themselves such as a short film explaining what lymphedema is that they can show at school.

3) To initiate an international network dedicated to children and families with lymphedema.

of the project. From my point of view, At the same time, parents were seeking running the camp during the fourth ILF answers and we thought that providing conference in Montpellier was an excepspecific and general information on tional opportunity to share the experience the condition would help families to with other countries and to draw access quality local treatment attention of all professionals and support and also reduce and experts of the field to their feelings of isolation The children the needs of children and helplessness. The were very happy and families on the rare weekends started with to meet each other; form of the condition. an annual multidisciplinary team-based they became From your perspective, consultation for each “lymphedema what was the most individual child, based on friends”. remarkable component? scientific and medical care.

It was having participating This was followed by selffamilies from four different countries management interactive workshops (Canada, Denmark, Sweden, France), a plus creative and social activities that multidisciplinary health care team and were designed for the participants and documentary film makers come together to professionals to interact. meet with lymphedema experts at the ILF camp and conference. This experimental Was this the first year the camp was project has created a collective dynamism extended to a weeklong event? and exceptional confidence which we now Yes, it was. It proved to be successful, hope to share with everyone. For more yet presented a real challenge as we information about the camp and to access had to manage simultaneously the implethe video tools when they are completed, mentation of a full therapeutic education please visit www.lympho.org. LP program and the international dimension

Fall 2012

The reflections of a mother and son’s adventure

By Kim Avanthay

A

fter a long overseas flight, we arrived at the camp in Montpellier, France and met the other families, most of whom already knew each other from previous camps. There were nine youth in total, two

our health needs included physiotherapists, a psychologist, doctors, angiologists, dermatologists, podologists and dieticians.

Information sessions included a selfbandaging class using different products

girls and seven boys, who came with their parents from Sweden, Denmark, France and Canada. The ages ranged from 6–21, with my son Austin being the youngest. Although Austin “knew” there would be other campers with lymphedema, he really surprised me when he asked the first boy he met why he was wearing a compression sleeve. This was an eye opener for me and validated the key reason for making this trip with Austin – for him to meet other children with lymphedema and understand that he was not alone.

As we were introduced to the camp hosts (International Lymphoedema Framework (ILF), Montpellier University Hospital, the video crew and camp facilitators, Fabienne, Veronique and Florence), I immediately felt that this was going to be a great week!

The multidisciplinary team looking after all

and techniques. It was great to see Austin take control and do it for himself, along with some guidance. This may be something we can incorporate into our nighttime routine, with practice.

“

“

The best thing was watching the video of the camp...and my birthday cake.

The self-drainage session was more educational for myself than a six-year-old boy. However as Austin gets older and comfortable in practicing self drainage, it will be an important aspect of keeping his skin soft and the lymphedema under control.

Proper skin care is crucial for lymphedema patients as infection can spread quickly.

Therefore we have to be diligent in monitoring

patient centred

consensus

best practice LAO research based

education knowledge

FEATURING CANADIAN, AMERICAN & INTERNATIONAL EXPERTS Hosted by

Fall 2012

Lymphedema Association of Ontario

best practice

patient centred

standards

research based

standards

Kim Avanthay has been on a mission to raise awareness about primary lymphedema. She is an active member of the Canadian Lymphedema Framework (CLF) Advisory Board and Partnership Working Group. She has recently launched a new provincial patient association in Manitoba.

Lead sponsor

—Austin Avanthay

changes in Austin’s skin, such as cuts or abrasions. We were taught about the importance of keeping his skin hydrated and the types of products that are best.

Very relevant to us was the foot care session as I am concerned with Austin’s feet and his lack of an arch. We were shown the proper way to cut toenails and learned the importance of wearing proper fitting shoes.

A podiatrist pointed out the pressure points on Austin’s feet that I need to keep an eye on.

The children spent many hours frolicking in the pool all week, playing water polo and racing down the water slides. Not only were these activities filled with lots of laughter, but

16th Annual Lymphedema Conference Empowering patients and professionals

3ATURDAY s /CTOBER

ŽƵƌƚLJĂƌĚ DĂƌƌŝŽƩ ͻ dŽƌŽŶƚŽ

For more information and to register online visit www.lympHOntariO.CA

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

11

â&#x20AC;&#x153;

Even Austin was overcome with emotion when everyone sang â&#x20AC;&#x2DC;Happy Birthdayâ&#x20AC;&#x2122;.

â&#x20AC;&#x153;

overcome with emotion when everyone sang â&#x20AC;&#x2DC;Happy Birthdayâ&#x20AC;&#x2122;. His celebrations continued at the conference dinner where his eyes widened with surprise upon presentation of a birthday cake and shiny sparkler. It was an amazing finale to a week that Austin will never forget. very therapeutic for lymphedema, as the water acts like compression.

On Friday, June 29th, Austin woke up excited to be celebrating his 7th birthday in France. We travelled by tram to Le Corum conference venue to join fellow camp families as well as ILF conference delegates for a fitting ending to our week long adventure.

Fabienne Mourgues, the Childrenâ&#x20AC;&#x2122;s Camp facilitator, spoke first, followed by Christine Moffatt, Chair of the ILF who presented

the findings of her â&#x20AC;&#x153;Quality of Life Study in Children with Lymphoedemaâ&#x20AC;?. She targeted so many issues that I felt she was talking directly to me and the other families. After the amazing video was shown of our weekâ&#x20AC;&#x2122;s highlights, we were all invited to come on stage for a round of applause (see page 8).

As I scanned the auditorium, I could see many parents who were touched by our weekâ&#x20AC;&#x2122;s experiences as there wasnâ&#x20AC;&#x2122;t a dry eye among the delegates. Even Austin was

A heartfelt thanks goes to all who made this camp adventure not only a reality but a remarkable learning experience for all the children and parents. I eagerly anticipate the release of the wonderful documentary about children with lymphedema currently in production as a result from this camp. LP For more information about future International Lymphoedema Childrenâ&#x20AC;&#x2122;s Camps and how to donate, visit www.lympho.org

Fast-trrack yyour o home trreatment our eatm eatment plan with h Lympha Lympha PreessÂŽ es Designed with the principles ples of manual llymph ym mph drainage Complet ompletee upper body ther including chest, back shoulders and abdom d

Complet ompletee lower body therap apy, including the abdomen, men, hipss,, butto ocks and genital al areea

Call P Par arradigm adig Medical for further information on the pumps and garments rments avvailable ailable.

r r r t XXX QBSBEJHNNFE DPN

12

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

Fall 2012

Consumer Options

Donning Aids for Compression Garments ompression therapy is central to lymphedema management, yet putting a compression garment on can be difficult. This may lead to poor adher-

C

a slider is an indispensable part of facilitating compression treatment.

Several kinds of aids are commercially available. They range in price from $4 to

ence to the treatment, which can negate any benefit achieved from the initial volume reduction from compression bandaging.

A slider is an indispensable part of facilitating compression treatment for those living with lymphedema.

$77 and can be ordered over the internet (www.lymphedemaproducts.com) or enquired about at your local fitter. The following examples are just some of the names and products available.

The Medi Butler is a steel frame that is available in various sizes. The compression garment is stretched onto the frame, then the foot or arm placed inside.

The Arion Easy Slide is a tube made out of nylon cloth. It is placed on the arm first and the compression sleeve slides over it. The nylon slider is then removed by pulling a handle. The ActiGlide is a double pocket made out of nylon cloth and it is useful for donning support stockings. It has holes at the heel and back

The application of a compression sleeve can be especially problematic, if for example padding is necessary under the sleeve to break up hard, fibrotic tissue. In addition, certain circumstances may require removing and putting the garment back on several times a day (e.g. activities requiring sterile conditions and good dexterity). If it is easy to put on a sleeve quickly using a slider-aid, then it is possible to remove it to complete a task without a sleeve for a few minutes then put it back on, with minimal effect upon the swelling. For all these reasons,

of the foot and a pin is threaded through them to keep it in place, as the stocking slides over it. Once the stocking is in place, the pin is pulled and the slider removed. The Medi Easy-on Foot Slipper is a simple cloth “pocket” that only works for open-toed stockings. EZY-AS Donning Aid is a hard-plastic “cylinder” open in one side and can be used for arms or legs and comes in several sizes. There are also products to aid the Photo: Doff N’ Donner

A slider is an indispensable part of facilitating compression treatment for those living with lymphedema.

Dr. Leda Raptis, PhD is a professor and cancer researcher at Queen’s University funded by CBCF, CIHR and NSERC. She is also a breast cancer survivor with lymphedema of the right arm and hand, and an amateur seamstress who makes her own creative sliders.

Fall 2012

Photo: Medi Butler

By Leda Raptis

removal of compression stockings, such as a plastic device called Medi Butler Off. The Doff N’ Donner works on a different principle and is available from www.doffanddonner.com. It can be used on both knee high or thigh high stockings.

The compression stocking (closed or open toe) is applied to a cone-shaped pole which is secured upright on a base.

Then a doughnut-shaped, water-balloon (the donner) is placed on the pole and the support stocking is rolled around it.

The stocking is then simply rolled onto the leg, then rolled down to remove.

Whether using donning devices or not, textured rubber gloves with a good grip are an inexpensive and essential staple to not only pull the garment but also

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

13

THE VITALITY OF THE SEA

to arrange it so that it stays flat against the skin without creases. There are also topical skin lubricants to make the garment slide better such as Compression Assist and the Alps Fitting Lotion that helps prevent snags. Finally, the Juzo Easy Pad is a mouse padâ&#x20AC;&#x201C;like mat that prevents slipping while putting on a compression stocking.

All of the above devices are able to facilitate the process of getting garments on and off, but most can be complicated

and are not easily portable. For an inexpensive, transportable and effective alternative, I have created sewing instructions for the construction of cloth sliders which are easy to make by a nonexpert sewer. As no hand-sewing is necessary, they can be made by someone with minimal dexterity, that is, even if they are wearing compression bandages or sleeves.

The key components are a sewing machine and using the appropriate slippery cloth material (extremely important). The full set of directions including material selection, sewing and assembly along with pictures and diagrams can be found on this magazineâ&#x20AC;&#x2122;s websiteâ&#x20AC;&#x201D; www.lymphedemapathways.ca Those living with lymphedema are encouraged to find the tool that is right for them to help make the daily habit of getting garments off and on much easier. LP

References 1. Wasall A: Compression hosiery: donning aids and garment removal.

British Journal of Community Nursing.

12: S10, 12, 14-S10, 12, 16, 2007.

Editorâ&#x20AC;&#x2122;s Note: The author has generously provided her contact information for those who wish to ask specific sewing and assembly questions or need help in locating the appropriate fabric material. Ask for Leda at 613-533-2462. raptisl@queensu.ca

Â&#x2021; 7UDLQ ZLWK LQWHUQDWLRQDO H[SHUWV LQFOXGLQJ

'U $QQD 7RZHUV 3URI +RUVW :HLVVOHGHU

DQG 3URI 1HLO 3LOOHU

Â&#x2021; 7UDLQLQJ WKURXJKRXW &DQDGD

Â&#x2021; &DQDGLDQ Âą EDVHG

Â&#x2021; /$1$ FRPSOLDQW

14

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

Fall 2012

Patient Perspectives

Managing My Lymphedema

A collaborative approach between a patient and her clinical team

By Melissa, Dorit Tidhar and Maureen Adelman

atient Melissa writes: I am a cancer survivor. When I was 10 years old, I was diagnosed with Ewing’s sarcoma (Box 1). Since being in remission, I haven’t spoken nor shared my past with anyone.

I tell my story now in the hope that it will create awareness of lymphedema, provide data to researchers in their work on prevention and help other people living with lymphedema.

Thinking back, it was the continuous

P

1 Ewings Sarcoma is a rare type of cancer that affects bones or nearby soft tissue and is most often diagnosed in children and young teens. pain that kept me up all night, affecting my daily activities. My parents and I were initially told by a few doctors that there was nothing wrong, and that it was probably growing pains. But after another doctor

Graph 1 Volume of Both Legs – Sent by CDT Therapists 11,000 10,500

Le

10,490

10,699 10,297 10,203

10,000

Volume in ml

Right

9,983 10,181

10,217

10,225

10,158 10,076

9,500 9,000 8,500

8,684

8,684

8,684

8,000 18/10/11

25/10/11

1/11/11

8/11/11

15/11/11 22/11/11 29/11/11

6/12/11

13/12/11

Dates

Melissa chose to remain anonymous but wanted to tell her story of the collaborative approach between herself and the lymphedema clinical team.

Dorit Tidhar, MScPT is a certified teacher in self-management and exercise by Dr. Judith Casley-Smith. She designed an Aqua Lymphatic Therapy program to help maintain and improve the results of conventional treatment.

Maureen Adelman is a fitness trainer specialized in Dr. Casley-Smith’s self-management and exercises for lymphedema, as well as the Dorit Tidhar method of Aqua Lymphatic Therapy. She is a member of the interdisciplinary team at the MUHC Lymphedema Clinic.

Fall 2012

found a grapefruit sized lump on my hip and a biopsy was performed, my parents were told I had a cancerous tumor. My first question when I met the doctor was whether I would lose my hair. When he answered “yes,” I cried for the very first time since finding out about my cancer.

I felt my world just shatter. I endured a long journey of radiology, chemotherapy, the loss of an unscarred body, the loss of my hair, months of difficult rehabilitation, and many surgeries before I was finally in remission.

A little over a year ago, at the age of 29, these old memories came rushing back. I noticed changes in my left leg which became swollen in the evening, but was back to normal in the morning.

As the days went by, the pain and swelling worsened and wounds started to appear.

I was constantly tired and exhausted and I imagined the worse scenario; that the cancer had come back and I was going to die. I was frightened and did my best to hide it from everyone. I was getting married in a couple of months and wanted so deeply to live my wedding day to its fullest by my husband’s side. But the pain soon became unbearable. Several months after

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

15

team; a physiotherapist specializing in

Graph 2 Follow Ups at the MUHC Lymphedema Clinic 11,000

Le

10,919

Right

10,500

Volume in ml

10,000 9,500 9,000

Self Bandaging Change of Technique

9,718

9,594 9,025

9,364 9,095

9,059

8,500 8,000

9,418

9,304

9,310

9,146

8,377

8,377

7,000 6,500

by experienced and knowledgeable individuals I now had a concrete treatment plan to follow that could positively affect my

several times a week for manual lymphatic

6,000 29/11/11

13/12/11

27/12/11

10/1/12

24/1/12

7/2/12

21/2/12

6/3/12 13/3/12

Dates

these changes started, my loving husband noticed that I was trying so hard to hide the problems I was having with my leg and insisted on taking me to the hospital. As scared as I was, part of me was so relieved that I was no longer alone. By that time, my left leg had a circumference difference of more than 10 cm from the other one.

I was told that I had a chronic deep vein thrombosis and that there was no sign of

16

for Complete Decongestive Therapy (CDT). I was instantly motivated as I was surrounded

condition and help get my life back.

I saw the lymphedema therapist

7,500

18/10/11

lymphedema and an exercise trainer. I was also referred to a lymphedema therapist

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

cancer. I was hospitalized for observation and immediately given injections to ensure the clot did not travel up to my lungs. With medication and a compression stocking, my swelling slightly diminished yet I felt discouraged and sad as I was no longer making any progress. My doctor was able to locate the Lymphedema Clinic of the McGill University Health Center (MUHC).

There I met with Dr Anna Towers and her

drainage and bandaging. The first few weeks were the hardest and painful as my body adjusted itself. At times I would feel burning and cramps and sharp pains around my ankle. With the exception of showering, the bandages were on 24/7 for almost four months. In November I added Aqua Lymphatic Therapy (ALT) to my therapy regime. Although my therapist told me after a month of treatments that I had reached a plateau and could be measured for a custom compression stocking I could not accept that this was it. I had lost one

Fall 2012

litre of fluid in my limb so in no way did I

layers of bandages would not roll and cause

and get healthy again. Once my husband

doubt this person’s competence, but I still had so much swelling. I scheduled another

more pressure on the tibialis anterior tendon.

At the end of application there was no

and I were taught the bandaging and massages, it became easier to manage and

meeting with the MUHC Lymphedema Clinic.

MUHC Lymphedema Clinic team perspec-

pain. Over time, as can be seen in graph 2,

we felt independent and resourceful. This

tive: Melissa was re-assessed after a month

Melissa experienced more reduction – this way some of the results from the ALT

experience has given me the opportunity to meet wonderful, genuine, generous people.

of CDT. She felt she was doing everything that she was supposed to, but wanted even

sessions were maintained and overall Melissa lost more volume before she stabilized again.

I have definitely learned to believe in myself, and that hard work does pay off. I now

better results. Measurements from the CDT therapist showed stabilization, however the ALT therapist reported reductions in the

Melissa concludes: I am grateful for

know that it is never too late to start the

many things, including the time off work, allowing me to allocate time for treatments

process of healing our bodies, our minds, and our hearts. LP

range of 400 to 500 ml after every ALT session. Yet, Melissa was not maintaining the results of the ALT sessions. The data that we received from the two therapists helped us understand that the compression bandaging was not effective. Melissa was asked to come with her bandages and show the team her self-bandaging technique.

Although two layers of bandages were applied, the system seemed “soft”, and yet when the bandages were removed there was a red patch in the frontal aspect of the ankle.

The bandages were being applied over a soft foam that was rolled from foot to groin.

Before

3 months

5 months

Af ter of Flexitouch treatment

Af ter of Flexitouch treatment

F lexitouch treatment

2 Laplace Law is used to predict the sub-bandage pressure that is directly proportional to bandage tension, but inversely proportional to the radius of curvature of the limb to which it is applied. h

The bandaging technique was changed in two ways: 1. To perform a safe effective bandaging system, the “law of Laplace” (Box 2) was implemented. Soft under cast material was applied in combination with a 1cm thick foam piece to protect the shin bone, top of the foot and around the malleoli, creating a conic shape. In that way, the pressure that was exerted on the limb was equal, effective, and most importantly, safe.

2. To create a stiff bandage, the bandages were first rolled in tension. With this preparation, tension was kept equal throughout the application of the bandages by Melissa’s husband. The ankle area was bandaged in a flexed position so that while walking, the

Fall 2012

The Flexitouch system delivers dramatic results for patients suffering from lymphedema. Our at-home pneumatic compression therapy helps patients to maintain or reduce limb volume between clinic visits, thereby increasing 1

range of motion and decreasing the pain associated with chronic swelling .

2

To read the full case study on the patient above, please visit:

flexitouch.com 1. “Home based lymphedema treatment in patients with and without cancer-related lymphedema,” Oncology Nursing FForum orum 2008; Vo ol. 35(4), Authors: Sheila H. Ridner, PhD, RN, Elizabeth McMahon, PhD, Mar y Dietrich, PhD, Sunday Hoy, Esq. 2. “Stage III lymphedema treatment using PT in conjunction with the Flexitouch,” http://www.tactilesystems.com/flexitouch/completed_studies.html Author: Julie Fulton, PTT,, CLLTT ©2012 TTactile actile S Systems ystems ems TTechnology echnology Inc. All rights reserved. D/N: 500111-000-00 Revv.. A 1//201 201 2 2

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

17

Ask the Expert

Managing Pain and Minimizing the Risks for Lymphedema

By Anna Towers

Q

I had an operation on my right groin

to remove a lymphode in 2011.

Since then I have been diagnosed with lymphedema in my right leg. I am now experiencing the same symptoms in my

What are some tips and strategies to

units. Many blood tests can be delayed

alleviate pain caused by lymphedema?

with no great harm to one’s health.

Q A

Lymphedema is usually painless.

However if there is a marked degree

of swelling then this can lead to heaviness,

left leg. Is it possible that lymphedema

bursting sensa-

can spread from one limb to another?

tions, and prob-

I am also experiencing throbbing pain

lems in joints,

in both legs and wonder if this is normal and what causes the pain?

ligaments or tendons that will be painful. Some therapies for

Any new lymphedema requires

A

cancer, such as radiotherapy or surgery

a thorough medical evaluation to

can cause damage to nerves as well as

determine the cause. If there is a new

causing lymphedema. In every case one

edema in the leg accom-

should find the cause of the pain, and then

panied by pain, then this

this can be treated with physiotherapy or

may require an urgent

analgesics if the cause cannot be removed.

medical assessment to

Good control of lymphedema, maintaining

rule out a blood clot in

limb volume as small as possible,

a deep vein. There are

will help minimize pain.

many other causes of painful swelling that a physician will need to investigate. One cannot assume a new leg swelling is lymphedema just because one has lymphedema in the other leg. However, it does often happen that people develop

Q

I have had a double mastectomy and

sometimes suggested. However, this is not very practical. Injections could be given in the legs or buttocks, which some clinics prefer, particularly for vaccinations that produce an inflammatory response, such as annual flu vaccines. If you specifically need cortisone injections in the at-risk shoulder joint or wrist because of arthritis or another inflammatory disorder such as carpal tunnel, then you need to weigh the risks. If you have so much pain that mobility is reduced, and you require a cortisone injection or minor surgery because other treatments have failed, then you need to know that lack of mobility is in itself a risk factor for developing lymphedema. You want joints that are pain

What are my options when I require blood pressure and/or IV punctures, blood work, cortisone shots, etc?

A

should advise you of. However, medical

One arm will be at a greater risk

free so that you can move normally to reduce your chances of developing lymphedema, or having existing lymphedema get worse.

LP

than the other, which your doctor

in the opposite side. An example would

tests and injections are done under tech-

be radiotherapy to the pelvis, or removal

niques that are at low risk for producing

of central or bilateral lymph nodes for

infection. Manual blood pressure devices

cancer staging or treatment.

are preferred over automated blood pressure

Anna Towers MD, FCFP is the Clinical Director of the Lymphedema Program, McGill University Health Centre and Associate Professor, Departments of Family Medicine and Oncology, McGill University. She is also the co-chair of the Canadian Lymphedema Framework.

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

Using feet or legs for blood tests is

at risk for lymphedema.

also impacted lymphatic nodes or vessels

18

be combined to minimize needle pricks.

now have BOTH arms

original cause of the lymphedema has

bilateral lymphedema because the

Also, you might ask that blood tests

HAVE QUESTIONS? If you would like to have a question answered by one of the health professionals on our Editorial Board, please contact us via email:

canadalymph@live.ca Be sure to put “Ask The Expert” in your subject line.

Fall 2012

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.

LONDON Cherryhill Village Mall 301 Oxford St. W (519) 434-3326

TORONTO Mount Sinai Hospital 600 University Ave. (416) 586-8709

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

TORONTO Lawrence Plaza 528 Lawrence Ave. W (416) 789-3368

SCARBOROUGH 685 McCowan Rd. (416) 431-4621 PENTICTON 1301 Main St., Unit 709 (250) 492-7592

Ontario locations are registered ADP vendors.

RED DEER 5250 22nd Street, Unit 70C (403) 342-4460 CALGARY/SOUTH 25A, 180-94 Ave. SE (403) 255-2288

VANCOUVER 370 East Broadway, Unit 202 (604) 876-4186 VANCOUVER #101-8289 North Fraser Way (604) 326-1117 VICTORIA 1561 Hillside Ave. (250) 370-2984

Leading the way to healthier, independent lifestyles.

www.shoppershomehealthcare.ca

Clinical Perspectives

Key Considerations for Garment Selection

By Jean Ann Ryan

ompression is an important element of lymphedema management for both active treatment and maintenance of the condition. Often patients are treated with some form of compression bandaging to first decrease the amount of swelling, and then they are ready to be prescribed and fitted with a compression garment.

Choosing the right garment can be challenging. A poor choice can lead to the patient simply choosing to not wear the garment or to wear it for less than optimal time. A few key considerations will help ensure the correct style and fit are obtained,

C

increasing the likelihood that the garment is worn in the prescribed way.

The first step in proper garment selection begins with a thorough assessment, including a complete medical history, review of any comorbidities, social history and supports, as well as a complete physical evaluation.

Upon assessment the client, together with their healthcare provider will choose a style and compression that is best suited to the individual client’s needs. Sometimes the optimal therapeutic choice needs to be balanced with what is practical and acceptable to the patient. A certified compression garment fitter is required to ensure that an appropriate product is selected and specific measurements are taken to get the proper fit.

Compression garments for the upper extremity are available as prepackaged or custom made sleeves, gauntlets, and gloves.

For arm lymphedema most patients require either a compression level or Class I (20 –

Jean Ann Ryan, RN, CDT is an oncology nurse working in St. John’s, NL., at the Dr. H Bliss Murphy Cancer Centre. She has been working with lymphedema patients and fitting compression garments for over 15 years. She is actively involved in the CLF and the Atlantic Clinical Lymphedema Network.

A certified compression garment fitter is required to ensure an appropriate product is selected.

30mmHg) or a Class II (30 – 40mmHg).

For the lower extremity compression typically Class II (30 – 40mmHG), Class III (40 – 50mmHg), and very occasionally Class IV (60mmHg or higher) is required.

Lower extremity garments come in a variety of lengths and styles including knee high, thigh high, and pantyhose style. There are options for either open or closed toes. Other compression garments available include brassieres or vests for breast or chest wall edema, Whittaker pouch for scrotal/genital edema, and a variety of compression masks for facial edema.

Flat knit garments are typically custom made and may provide a superior fit.

These garments are “tailor made” specifically for the individual patient. The fitter will take numerous measurements of the limb so the manufacturer can produce a garment

You Are Not Alone You have access to information, resources, contacts and support from people who know what you’re going through from their own personal experience. You have the following organizations on your side.

20

Alberta: Alberta Lymphedema Association

www.albertalymphedema.com

British Columbia: BC Lymphedema Association

www.bclymph.org

Manitoba: Lymphedema Association of Manitoba

www.lymphmanitoba.ca

Ontario: Lymphedema Association of Ontario

www.lymphontario.ca

Quebec: Lymphedema Association of Quebec

www.infolympho.ca

Saskatchewan: Lymphedema Association of Saskatchewan

www.sasklymph.ca

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

Fall 2012

to fit the exact shape and size for the patient. There are many different types of fabric, styles, levels of compression and some colors available in flat knit products.

However, the material tends to be firmer, thicker, and more costly to produce. The thickness of a flat knit garment can be challenging for some patients with dexterity problems or may be a deterrent for those who do not find the garments aesthetically pleasing. Custom made garments are the better choice for patients with severe limb deformity or limbs that don’t fit the prepackaged sizes.

Circular knit garments are seamless, and because of their finer finish, may be more cosmetically acceptable to some patients.

Most often these garments are prepackaged and offer a larger variety of colors, styles and fabrics. Circular knit garments require basic measurements with the sizes falling within a range, meaning they are not made to exact measurement for the individual patient. A wide variety of products, sizes

and styles allows for many lymphedema patients to be satisfactorily fit with these off-the-shelf products. They can often be obtained immediately and tend to be less expensive than custom-made products.

Compression garments require replacement every four to six months or sooner if the garment has lost its elasticity. The financial burden of garments may be a barrier to patients purchasing and replacing garments. Cost may be an important consideration when deciding upon the most suitable garment for an individual. Ideally, patients should have one garment to wash and one to wear.

In Canada there are several suppliers of both custom made and pre-packaged medical compression garments (some of which are advertised in this magazine).

It is advisable prior to ordering to check the return policy on both custom and pre-packaged garments.

The patient is the most important person on the healthcare team. When deciding

Key considerations 1. What level of compression 2.

3.

4.

is most appropriate?

Will flat or circular, custom or prepackaged provide the best outcomes?

Which type of garment will fit best into the patient’s lifestyle?

What reimbursement considerations should factor in the decision?

upon the most suitable garment for a particular client, it is essential that there is good and open communication between the therapist, patient and fitter. The healthcare team needs to work collaboratively to ensure that the patient is fit with a garment(s) that meet their individual needs, provides therapeutic benefit, and is comfortable enough for the patient to wear throughout the day. LP

Inpatient Lymphedema Treatment with Combined Decongestive Therapy and Manual Lymph Drainage according to the Dr. Vodder method.

With the help of an optimized therapy approach, we want to improve your lasting well-being, not only at the clinic, but also when you return home. Hence, follow-up care is a priority for us.

Your individualized treatment package:

• • • • • •

Benefits:

Accommodation in a single-room with full board or special diet Combined Decongestive Therapy including Manual Lymph Drainage according to the Dr. Vodder method Edema gymnastics and aquarobics Pneumatic compression, if prescribed Ongoing medical supervision And much more

• Holistic lymphedema management • Inpatient stay and efficient Lymphedema treatment • Experts in Manual Lymphatic Drainage trained in the Dr. Vodder method toll Global

mb er* -free nu 6

96 99 88 9 .

011 80s 0only from landcelissnes *) Work obile phone ac No m

Wittlinger Lymphedema Clinic, Austria Europe’s center for excellence in holistic lymphedema management.

Wittlinger Lymphedema Clinic Alleestraße 30 • 6344 Walchsee/Austria Phone 01143 5374 5245 0 office@lymphedema-clinic.com www.lymphedema-clinic.com

Fall 2012

WITTL NGER

DR.VODDER ACADEMY

LYMPHEDEMA CLINIC

MANUAL LYMPHDRAINAGE ORIGINAL METHOD

I N T E R N A T I O N A L

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

21

Massage Therapists

The Impact of Massage Therapists on Lymphedema Management in Canada

By Robert Harris

assage therapists have played a pivotal role in Canada in bringing lymphedema management to the forefront.

They form the largest group of health care professionals trained in lymphedema care in Canada, according to a 2010 CLF survey, and continue to play key roles not only in patient care, but also in research, education, and advocacy.

Training in Combined Decongestive Therapy (CDT) – which includes manual lymph drainage, compression, exercise therapy and skin care - was first introduced in Toronto in 1982 by Günter and Hildegard Wittlinger, both massage therapists and teachers in Austria. However full certification wasn’t available in Canada until 1994, when the Dr. Vodder School was established in Canada. Before that, many therapists travelled to Europe and brought back to Canada this new lymphedema therapy, which was relatively unknown at that point as the traditional therapies prescribed by most physicians in Canada included only pneumatic compression and elevation of the affected limb.

Massage therapists have been pioneers in providing lymphedema education in Canada. Registered massage therapists are involved in various aspect of education including teaching Vodder courses, providing education to health professionals and patients in hospital settings, leading lymphedema support groups or offering specialized aquatic training. The Canadian Lymphedema Framework (CLF) Education Committee also counts many massage

M

therapists (as well as physicians, nurses, physiotherapists, and occupational therapists) among their members who volunteer their time and experience.

Several massage therapists have been innovative in making lymphedema related products more accessible to therapists and patients in Canada by becoming distributors for night-time garments, bandaging and compression materials or skin creams designed for patients with lymphedema.

Massage therapists have been instrumental in establishing good patient care in Canada. Some have helped establish lymphedema care programs at publically funded hospitals and others have established their own private treatment centres. While there are over 230 currently-certified Vodder-trained massage therapists practicing within Canada, there are additional certified lymphedema therapists from other disciplines (physicians, physiotherapists, occupational therapists and nurses) who have received their lymphedema training from either the Vodder School or other Lymphology Association of North America (LANA) approved lymphedema schools. Even so, the need for more trained therapists to meet the needs of patients exceeds the availability.

One of the biggest roles that massage therapists have undertaken in Canadian

Robert Harris, RMT is a certified instructor of the Dr. Vodder Schule-Austria since 1987. He established the Dr. Vodder School in North America in 1994 and has introduced the Dr. Vodder method to many countries including Australia, New Zealand, Singapore, Korea and Taiwan.

22

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

lymphedema management is to help establish provincial patient support associations.

Many continue to support these organizations by partnering in educational activities and conferences, advocating on behalf of patients, fundraising and raising awareness for lymphedema in their province.

Lymphedema research is gaining momentum in Canada, and massage therapists have been involved, either supporting key projects or as key investigators in research studies related to MLD with published research findings in peer reviewed journals.

Most massage therapists in Canada receive a 2200 hour minimum education, which includes basic anatomy and physiology of the lymph vessel system.

Some receive basic MLD training and understanding of lymphedema, however the majority of massage therapy graduates across Canada do not receive enough education to be qualified to treat lymphedema patients. Massage therapists, (and other lymphedema health professionals) must therefore take post-graduate training in lymphedema management in order to treat patents comprehensively with CDT. These training programs provide a minimum of 135 hours of CDT instruction (1/3 theoretical and 2/3 practical) specific to the treatment of lymphedema.

In summary, massage therapists are a dedicated group of health professionals, not only appropriately trained to offer comprehensive treatment for lymphedema care, but also actively involved in many aspects of the lymphedema community— making a valuable impact. LP

Fall 2012

100 Years of Partnerships.

A Century of Good Health.

It’s no mistake that Juzo is trusted by the world’s most renowned doctors & dealers.

Maybe it’s due to our 100 years of innovative product developments. Maybe it’s because of our results. We’d like to think it’s because we care more about the health of your patients than our bottom line.

Celebrating

For more information visit www.juzousa.com

100YEARS

of good health

Helpful Suggestions

Hints and Tips If the shoe fits People living with lymphedema know that fitting shoes can be a problem when one foot is swollen and larger than the other. It is expensive to purchase dual pairs of shoes in different sizes. A tip is to choose the shoe size that will accommodate the larger foot. Then insoles can be used to down-size the shoe for the “normal” foot. You can keep a pair of insoles in your bag so that you have the option of either inserting or removing them when foot size fluctuates during the day or when travelling.

Garment care Regular washing of compression garments is important for proper hygiene and to extend the life of

the garment. But did you also know that washing the garments after each wear realigns the fabric fibres which in turn “resets” the compression, ensuring that the garment is delivering the proper gradient compression?

Please check the individual manufacturer’s instructions as washing instructions vary.

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

lymphedivas MEDICALLY CORRECT FASHION FOR LYMPHEDEMA

Treat your body. Treat your spirit. Treat yourself.

You deserve a compression garment that feels as good as it looks!

LympheDIVAs provides either Class 1 or Class 2 medical compression in both sleeves and gauntlets — and we do it in something other than just boring beige. With over 25 patterns, 2 crystal additions and our Diva Tone line with 30 unique skin tones, LympheDIVAs works to provide you with medical compression that you would actually want to wear. All our garments are made in the USA with a state-of-theart breathable and moisture-wicking fabric with 360° stretch to decrease binding at the elbow. Say “Goodbye” to beige and slip into the comfort of LympheDIVAs!

WWW.LYMPHEDIVAS.COM 866-411-3482

24

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

Fall 2012

Medical Updates

Did You Know?

National lymphedema patient registry

Patient information is the key to finding a solution and it is a critical resource to advance science and ultimately medical care. The national lymphatic disease and lymphedema registry is a confidential database that contains information about individuals who carry the diagnosis of a lymphatic disease or of lymphedema.

The comprehensive registry by the Lymphatic Research Foundation (LRF) will serve as a repository of information that will enhance the future ability of health care professionals to accurately identify, categorize, treat and prevent these diseases. All patients are invited to

participate in this highly significant develop-

cally progressive, we speculate that major

ment for the patient community. To register, go to: www.lymphaticresearch.org.

weight loss (e.g. after a bariatric procedure) might reverse lymphatic insufficiency

Link between obesity and lymphedema?

in obese patients with this conditionâ&#x20AC;?.

Source: New England Journal of Medicine

Not only does weight have an impact on people with lymphedema, but recent research is showing that lower extremity lymphedema may be linked to extreme obesity, as there appears to be a body mass index (BMI) threshold above which lymphatic flow becomes impaired. Lymphoscintigraphy helped identify lymphatic function in obese patients in the study. The authors write that â&#x20AC;&#x153;although lymphedema is typi-

May 2012

Volunteers required

Dr. Roanne Thomas, Canada Research Chair at the University of Ottawa, is working on a few studies related to experiences of secondary lymphedema after all types of cancer and is seeking individuals who are willing to participate in interviews in Ontario, New Brunswick and in the Montreal area. If you would like more information about this research, please email roanne.thomas@uottawa.ca or visit www.roannethomas.ca LP

Clinically-proven linically-prroven relief of symp symptoms toms of swelling swelling..

An effective & safe solution based on years of clinical use! ÂŽ LYMPHDIARAL L YMPHDIA YMPHDIARAL

LLV D KRPHRSDWKLF SUHSDUDWLRQ XVHG IRU V D KRPHRSDWKLF SUHSDUDWLRQ XVHG IRU G GHFDGHV LQ WUHDWLQJ V\PSWRPV RI HFDGHV LQ WUHDWLQJ V\PSWRPV RI sw swelling, elling, inflamma inflammation tion D DQG QG inf infection. ection. & &XUUHQWO\ WKH VXEMHFW RI D PDMRU XUUHQWO\ WKH VXEMHFW RI D PDMRU FFOLQLFDO WULDO RQ O\PSKHGHPD LQ OLQLFDO WULDO RQ O\PSKHGHPD LQ //RQGRQ 2QWDULR RQGRQ 2QWDULR LYMPHDIARALÂŽ 'URSV LYMPHDIARALÂŽ )RUWH LYMPHDIARALÂŽ 'UDLQDJH &UHDP LYMPHDIARALÂ&#x160; 6HQVLWLYH &UHDP

N AT U R A L M E D I C I N E

Fall 2012

Benefits Â&#x2021; Â&#x2021; Â&#x2021; Â&#x2021; Â&#x2021; Â&#x2021; Â&#x2021; Â&#x2021;

*HQWOH DQG VDIH WR XVH *HQWOH DQG VDIH WR XVH 3URYHQ LQ FOLQLFDO VWXG\ 3URYHQ LQ FOLQLFDO VWXG\ &UHDP IRU WRSLFDO XVH &UHDP IRU WRSLFDO XVH 'URSV DQG DPSRXOHV IRU 'URSV DQG DPSRXOHV IRU VV\VWHPLF XVH \VWHPLF XVH Â&#x2021; Â&#x2021; 'HFDGHV RI XVH E\ PHGLFDO 'HFDGHV RI XVH E\ PHGLFDO SURIHVVLRQDOV ZRUOG ZLGH SURIHVVLRQDOV ZRUOG ZLGH

www.pascoecanada.com www .pascoecanada.com

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

25

Education

Canadian and International Events

October 7-9, 2012 Cardiff, Wales

The British Lymphology Society will host its annual conference in Cardiff. www.thebls.com

October 26, 2012 Toronto, Ontario

Canadian Lymphedema Framework (Working Group meetings) focusing on research, education and partnership development ■ canadalymph@live.ca

October 27, 2012 Toronto, Ontario

Lymphedema Association of Ontario’s 16th Annual Lymphedema Conference Empowering Patients and Professionals ■ www.lymphontario.ca

February 9-10, 2012 Truro, Nova Scotia

The Atlantic Clinical Lymphedema Network will host a 2-day course for therapists in advanced management of lymphedema in breast cancer rehab. This course will be taught by Julia Osborne PT, CLT-LANA of Australia ■ Please email Andrea.Tilley@horizonnb.ca

September 15, 2013 Rome, Italy

24th International Congress of Lymphology www.lymphology2013.com

Letters to the Editor... hways

We would love to hear from you...

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

t ed Pa tureceiv t s ju ongra I d to c te n ss! a succe and w n [its] o u o late y der ful a won , What vating ; capti e c r u full of reso e, and v ti a v n! inno matio l infor ian usefu Canad eil, n McN Network – Jen er c n a C t Breas

I just want ed to mom take ent to a brie cong f on th r a tulate is lov ely p you gratif u b li ying cation to se . It’s will m e and ake a am s ure real d our li iffere ttle ly nce in mphe comm dema unity. world I app intern recia ation t e a the l flare look and f at co o m c press used let m ion. P e kno lease w if I you in c an su any w ppor t ay.

–S

teve Nor to Nor ton, n Sch ool o f Lym phati c The

ding ed rea y finish t s utifull a ju I’ve a be ’s t I . ays ion Pathw blicat s ed pu t n e s ar ticle pre itten r w ll nity e mmu with w he co t e it ratun Cong that u ada. n a C s have acros ll who a o t ul s nd so lation ear t a h ir e e. put th agazin he m into t – Deb

Ruskin

rapy

Lymphedema

Pathways Empowering patients and professionals

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

Platinum Sponsorship

Silver Sponsorship

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

Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association

Gold Sponsorships

Bronze Sponsorships

Lymphedema Association of Manitoba Lymphedema Association of Ontario Lymphedema Association of Quebec Saskatchewan Lymphedema Association

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

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

Charitable Registration 85160 1260 RR0001

Fall 2012

LLymphedema? ymphedema? y

^ŽůƵƟŽŶƐ ĨŽƌ 'ƵLJƐ ĂŶĚ ŽůůƐ ^ŽůƵƟŽŶƐ ĨŽƌ 'ƵLJƐ ĂŶĚ ŽůůƐ

LLymphedema ymphedema — P Post-Surgical ost-Surgic al EEdema dema — Sports Injur Injuryy Therap Therapyy

&Žƌ ƌĞůŝĞĨ͕ ƐŝŵƉůLJ ƐŶŝƉ ĂůŽŶŐ ƚŚĞ ĚŽƩĞĚ ůŝŶĞƐ͕ ƉůĂĐĞ ŐĂƌŵĞŶƚ ĂŶĚ ƚƵƌŶ ƚĂďƐ͘​͘​͘Žƌ LJŽƵ ĐĂŶ ŐŝǀĞ ƵƐ Ă ĐĂůů͊ KƵƌ ŝŶŶŽǀĂƟǀĞ ĐĂƌĞ ƉƌŽĚƵĐƚƐ ŚĞůƉ ƌĞĚƵĐĞ ƐǁĞůůŝŶŐ ĂŶĚ ƉƌŽǀŝĚĞ ƌĞůŝĞĨ ĨƌŽŵ ůLJŵƉŚĞĚĞŵĂ͕ ĂŝĚ ŝŶ ƉŽƐƚͲƐƵƌŐŝĐĂů ƌĞĐŽǀĞƌLJ ĂŶĚ ƐƉŽƌƚƐ ŝŶũƵƌLJ ƚƌĂƵŵĂ ĨŽƌ Guys and Dolls͘ dŚĞƌĞ ĂƌĞ :ŽsŝWĂŬ ƉƌŽĚƵĐƚƐ ĂǀĂŝůĂďůĞ ĨŽƌ ĞǀĞƌLJ ƉĂƌƚ ŽĨ ƚŚĞ ďŽĚLJͶǁĞ ŝŶǀŝƚĞ LJŽƵ ƚŽ ǀŝĞǁ Ăůů ŽƵƌ ĐĂƌĞ ƐŽůƵƟŽŶƐ Ăƚ ũŽǀŝƉĂŬ͘ĐŽŵ Žƌ ĨŽƌ ŝŵŵĞĚŝĂƚĞ ƌĞƐƵůƚƐ ĐĂůů ĐƵƐƚŽŵĞƌ ƐĞƌǀŝĐĞ Ăƚ ϭͲϴϲϲͲϴϴϴͲϱϲϴϰ͘

ϭͲϴϲϲͲϴϴϴͲϱϲϴϰ

www.jovipak.com

MEDI LYMPHEDEMA GARMENTS

INTRODUCING FRESH NEW COLORS AND EXCLUSIVE NEW PATTERNS VÃ&#x160;TEMENTS LYMPHOEDÃ&#x2C6;ME MEDI

NOUVELLES COULEURS TENDANCES ET MOTIFS EXCLUSIFS

MEDI â&#x20AC;&#x201C; YOUR KEY TO SUCCESSFUL TREATMENT AND MAINTENANCE

MEDI â&#x20AC;&#x201C; VOTRE GARANTIE DE SUCCÃ&#x2C6;S AU TRAITEMENT ET MAINTIENT DE VOTRE PATIENT T

JUXTA-FITâ&#x201E;¢

These products make it possible for patients to manage their lymphedema while maintaining an independent lifest yle.

Ces produits of frent aux patients un meilleur co ntrô le d e le u r l y m phÅ&#x201C; d ème to u t en a s s u r ant l e u r au to n o mi e.

SVF %VWFSOBZ 7FSDIÃ&#x2019;SFT 2$ $"/"%" + - 3 SVF %VWFSOBZ 7FSDIÃ&#x2019;SFT 2$ $"/"%" + - 3

JJOGP!WBMDP DB t XXX WBMDP DB t OGP!WBMDP DB t XXX WBMDP DB t