Pathways Summer 2014 (Volume 3, Issue 3)

Canada’s Lymphedema Magazine

Pathways

SUMMER 2014

Empowering patients and professionals

Lymphatic filariasis

Integrative treatment in India

Lymphedema post gynecological cancer Breast cancer rehabilitation program

WH A T ’S INSIDE... Hope in Haiti I Case Study I Personal perspective I Affiliate profile I Ask the Expert

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Editor’s Message

Lymphedema suffering knows no borders

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he focus of this magazine is to empower patients and professionals who are living with or treating lymphedema. We believe that this includes sharing a global perspective of lymphedema and an awareness of what is happening outside our Canadian borders. After all – it’s the Canadian way! It opens our eyes to world issues, helps us appreciate what we have in Canada, and reminds us not to complain about matters outside of our control – enabling us to view lymphedema health care from a global perspective. We can learn from others, share ideas with them or even just recognize that sometimes we are all confronted with similar difficulties and challenges, no matter where we live. Lymphatic filariasis (LF) is in the spotlight for this issue. Most Canadians have no or little knowledge of this severe type of lymphedema and how it is an epidemic in countries such as India, Brazil and Haiti.

120 million people are affected worldwide, primarily in tropical and subtropical countries.

Rosemary Kelly recently visited India and gives us a first-hand account of the lymphedema treatment protocol at the Institute of Dermatology (IAD). I first met Dr. Bose, an IAD doctor, at an international conference in Brighton many years ago. I was impressed with his work and am glad the holistic approach to lymphedema treatment adopted by the IAD, under the mentorship of Professor Terence Ryan, is receiving attention in North America.

You don’t need to travel as far as India to

witness the suffering of lymphatic filariasis patients. Haiti is another country where the associated pain and profound disfigurement of LF leads to permanent disability, and the resulting mental, social and financial losses contribute to stigma and poverty. Robyn Byork shares her excitement, optimism and hopes that recent new program funding and initiatives will change the course of this country.

The Haiti protocol approach to LF will no doubt be widely studied.

Canadian lymphedema therapists may think they will never see a patient with lymphatic filariasis in their practice. Nadine Maraj-Niri is a Toronto-based certified lymphedema therapist who shares a case study of her patient who moved here from India with this condition, and the successful comprehensive treatment program that reduced her swelling and suffering.

The majority of lymphedema cases in North America stem from breast cancer treatment. Yet there are also a significant number of patients with leg lymphedema, primarily from gynecological cancer. Dr. Mei Fu gives us a review of gynecological cancer and lymphedema to share the spotlight with BC related lymphedema.

How does Canada handle diagnosis, treatment and follow-up of breast cancer related lymphedema? Andre Tilley is a physiotherapist who provides us with a snapshot from New Brunswick, by sharing the outcomes

of a breast cancer related rehabilitation program in her home town.

An important link in lymphedema education and awareness is the provincial lymphedema associations in Canada. Diane Martin gives us a personal perspective on her cancer and lymphedema journey and how it inspired her to establish the Alberta Lymphedema Association. A new column on provincial affiliates highlights the work of this organization including their recent advocacy successes to make lymphedema treatment accessible for all Albertans.

There are now seven provincial organizations dedicated to helping patients manage their lymphedema. This is a long way from 1997 – when the Lymphedema Association of Ontario was the pioneer and only voice.

We encourage readers to contact their local association for help to find therapists, support, fitters and products.

I am very thankful that I live in Canada where we have so many lymphedema related products to choose from and a lymphedema association in almost every province. Learning about the lymphedema challenges in other parts of the world makes me more appreciative, and it validates that I have much to be grateful for. LP

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Summer 2014

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Contents

Summer 2014

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Volume 3 Issue 3

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

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

Subscription Rates (1 year) Canada–$25.

International–$50.

Single copies and back issues–$7.

Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: canadalymph@live.ca www.canadalymph.ca Stock photos in this issue: CanStockPhoto Other photos are courtesy of R. Kelly, M. Fu, R. Bjork, N. Maraj-Niri

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

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Hard Work and Hope: Lymphatic Filariasis Treatment in India A visit to one of the world’s top lymphedema clinics

A remarkable clinic where professionals come together to combine Homeopathy, Ayurveda and Allopathy (biomedicine) into a successful program that can be translated from clinic or camp to home based treatment.

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Lymphedema after Gynecological Cancer An overview Patients undergoing gynecological cancer treatment need to be educated about the risk factors of lymphedema and self-monitoring to ensure early detection and timely treatment.

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Creating Global Opportunity and Changing a Nation Managing lymphedema in a resource limited setting can be daunting, but achievable.

Keys to success include international collaboration, donations, and creative use of limited resources. There is hope that the suffering of lymphatic filariasis in Haiti may soon fade into distant memory.

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Reviewing a Breast Cancer Rehab Program Survivorship Care Plans are gaining approval in Cancer Centers in North America.

Canadian physiotherapists need to get involved in order to help breast cancer survivors reach their physical potential following treatment.

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Treating Lymphedema Due to Filariasis A Case Study

A demonstration of the success and reduction one can achieve when all aspects of CDT are implemented, highlighting the value of a multi-disciplinary and multi healthcare approach, working together with family support, to help a patient manage lymphedema.

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Embarking on One of Life’s Most Profound Journeys

How a breast cancer and lymphedema diagnosis changed life drastically for one woman and inspired her to start a provincial association.

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Ask the Expert

Thankfully community organizations exist as an excellent resource for patients and health professionals.

Summer 2014

Treatment Approaches

Hard Work and Hope:

Lymphatic Filariasis Treatment in India A visit to one of the world’s top lymphedema clinics A remarkable clinic where professionals come together to combine Homeopathy, Ayurveda and Allopathy (biomedicine) into a successful program that can be translated from clinic or camp to home based treatment.

By Rosemary Kelly s I write this, I have been traveling all over India for four months, as a tourist, guest, speaker and student. Before I arrived, I did not appreciate the scale and scope of this magnificent country. Everything is different, there is so much to learn, adjust to, discover and be amazed by. It would take a lifetime to experience.

The social contrasts in the “developing world” are quite shocking to the westerner.

In Delhi, for example, a gigantic luxurious North American style shopping mall is directly across the street from a small community shared by humans and livestock, without running water or electricity. They use worn tarps and cardboard for shelter, open fires for cooking, for light and for burning the ubiquitous mounds of leftover garbage that has already been picked through for any edible scrap by goats and cows. There is beauty and misery here in equal measure; India is full of life, commerce, history, scintillating colours and spectacle.

As a lymphedema educator, my talks focus on lymphedema as a side effect of cancer surgery and radiation. I briefly mention lymphatic filariasis (LF) (elephantiasis) as a condition mainly seen in India, Africa and Brazil, but, until now, it was merely a footnote because it was outside of my experience and rarely seen in Canada.

Photos: R. Kelly

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In 2010, at the Lymphedema Association of Ontario’s conference, a short video was shown highlighting the esteemed Emeritus Professor Terence J. Ryan, from the Oxford Medical School UK, and the work of the Institute of Applied Dermatology (IAD) in India. This clinic is treating LF with great results. I was very excited and impressed. The following year at the International Lymphedema Conference, held in Toronto, Professor Ryan and Dr. Guruprasad Aggithaya from the IAD presented an inspiring workshop about their integrative methods and wonderful results. I knew then that if life ever took me to India, I would visit the IAD.

Rosemary Kelly is a lymphedema educator based in Kitchener Waterloo and Toronto. She has been teaching people about lymphedema locally and internationally for over a decade. She is one of the co-creators of Laughing Lymphercise. She communicates enthusiastically via email and invites you to visit her website, www.rosemarykelly.ca

Summer 2014

Welcome to Kasaragod The IAD is situated on the west coast of India, just on the outskirts of Kasaragod, a town of 1.2 million. The clinic is a warm and welcoming three-storey building with a large, airy foyer and reception. The doctors’ offices, pharmacy, lab, admission/diagnosis rooms, quarantine area and the patient counseling rooms are all on the ground floor. The second floor houses the rooms used for treatment, telemedicine (computer), yoga and the medical kitchen where the Ayurvedic preparations are made for the patients’ daily washes.

The top floor has the guest room, administration offices and a large meeting room.

One side of the building has stairs and the other has a ramp. Since mobility is an issue for most patients and exercise is so vital, the gently inclined ramp is a safe way for patients to get moving again.

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Ayurveda is an ancient practice which includes yoga.

Ayurvedic doctors study for many years and are respected physicians and healers. In the 1800s the British suppressed Ayurvedic medicine in India and closed all the teaching facilities, but the knowledge was preserved, text books were hidden away, practice went underground and once Independence was declared, it re-emerged. Sadly there is nothing that effectively regulates the use of the words “Ayurveda” or “Ayurvedic” in India and this has resulted in some substandard centres around the country, but the results of the work at IAD speak for themselves.

The clinic does not accommodate patients overnight. They stay in town at the various inns and guest houses and are shuttled to and from the IAD in the clinic’s one little van, seven days a week.

Treatment protocol The process for a patient once admitted is that s/he is examined and their condition assessed to determine the best medicines and treatment for the specific condition.

Texture, colour and temperature of the skin of the affected area are some of the many factors considered in diagnosis. The girth of the limb(s) is measured in seven specific spots and also by the water displacement method.

The patient stands in a big pail of warm water, one leg at a time and the displaced water that drains through a hose, is measured in litres. As the limb becomes smaller over time, it will displace less water. The limb(s) is then carefully dried and bandaged.

Observing the routines at the IAD There are many components to the patient’s well being and the success of their treatment.

The volunteer is welcome to politely and compassionately observe every aspect of the process. Visiting professionals are encouraged to share their expertise. My visit was organized so that I had one-on-one time with the doctors, therapists and consultants who all have a part in patient care. I was invited to observe patient admission and diagnosis, join morning rounds and watch presentations by staff members explaining his or her role.

One of the IAD’s special qualities is the fact that the majority of the staff is trained in several aspects of patient care. This creates a very strong team. Another is the openness with which they share knowledge, including how carefully they train the caregivers who accompany the patient.

Next, the patient and his or her caregiver(s) will be counselled on what will happen during their stay as well as their own vital role. This is one of the components that make the work of the IAD so powerful. The patient is expected from the beginning to commit to being an active participant in his or her recovery as are the family member(s). During the initial treatment (7, 14 or 21 days depending on the condition of the patient), the participants will be taught how to do every step of the protocol

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so that they can continue the work, the healing and the good results once they return home. This responsibility is emphasized and carefully explained by the IAD counsellors.

For some patients hoping for a magic cure, the idea of working at one’s health can seem daunting, especially when living with your condition requires so much effort. Some patients may go away and think about it, but the majority consent, especially since they have been shown encouraging examples of other LF sufferers who have persevered and gained success. Many patients come to the IAD after disastrous surgical interventions have exacerbated their conditions. People arrive miserable and desperate.

In extreme cases, patients must be quarantined because their condition is so severe: infection, putrefication and maggots.

Though LF can affect anyone who has been repeatedly bitten by the mosquito carrier/ transmitter, it tends to affect a very large number of the population’s poorest people.

These are people with little education, sometimes superstitious, with no resources or socialized medicine as there is no government safety net of any kind. The condition can cause shame and their impaired mobility and inability to work, increases their misfortune.

They are unable to care for themselves and due to lack of water their affected skin can become horribly malodorous and they can be shunned by their families. Crippling, disfiguring and debilitating, LF is a dreadful condition that affects an estimated 23 million people in India. The negative financial effect is tremendous, with losses to the Indian rural economy calculated at over one billion dollars annually. Remember, these are some of India’s poorest citizens who have very little to begin with, often calling a makeshift tent their home. Those fortunate enough to have contact with the IAD and who agree to Summer 2014

a hose, poured over the affected limb(s) for 20 minutes. This can also be done without a machine, as electricity is not always available.

The IAD defines phanta as “the process of soaking the affected limb in an herbalized solution to heal micro-scopic ulcers”.

hen 00 W r Any 4 $ e o Sav gister F rse u e o Y u Reduled CoCode: h o Sc Prom With 06

14 PAPM

The skin is then meticulously dried and an antifungal cream is applied between the toes and in all the crevices and skin folds where it could crack and create entry points for bacteria. Skin care is of utmost importance in LF treatment.

Yoga is the next step for the patient, incorporating exercises for balance, deep breathing (Pranayama) and yoga postures (Asanas).

Breathing exercises are very important for the lymphatic system. Although hard work, people with LF and huge limbs sit down on the floor crossing their legs as best they can.

This is followed by IMLD (Indian Manual Lymphatic Drainage), a rhythmic almost percussive massage technique to help move the lymph. It is attuned to the patient’s breathing, with a greater pressure applied on the up strokes towards the heart: 5 minutes of dry massage, then 20 minutes using one of six Ayurvedic oils (again specific to the diagnosis). If both legs are affected, two therapists will massage at the same time. Any oil not absorbed into the skin is wiped off and the meticulous rebandaging of the limb(s) is

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done, using gauze around the toes and strips of foam of various sizes underneath the short stretch compression bandages. Of all aspects of the treatment, the bandages are the most expensive part and patients reuse them as much as possible.

After the bandaging, the patient returns for more yoga, and then s/he must walk up and down the ramp that goes from the ground continued on page 8

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participate in their own recovery have hope.

The second and subsequent days of treatment begin with unbandaging the affected limb(s) and examining the skin again, Positive changes are often already discernible.

S/he then moves to the phanta washing room where a specific ayurvedic decoction has been provided as per diagnosis and, with the help of a small machine with a pump and

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floor to the top of the building as best s/he can, improving daily. During this entire time the family member/caregiver is participating, observing, being shown what to do and supporting the patient. The therapists carefully show the “student” over and over again, as they practice on their loved one becoming more confident and skilled. This can take at least three hours or more every day, gradually decreasing as everyone learns what they are doing and less explanation is needed.

At the end of the treatment period a final examination includes weighing and measuring once again. Patients often see a 50% reduction in swelling and leave the clinic with tremendous hope and faith that they have turned a corner and are on the way to recovery. There is a one-month, a three-month and a six-month follow up.

Compassion and medicine The IAD’s philosophy makes it a unique clinic, recognized as one of the top three clinics in the world by the International

Lymphoedema Framework, the World Health Organization and the International Society of Lymphology. One reason for the clinic’s effectiveness is the dedicated healers who have come together bringing the very best of each of their disciplines, to achieve an outstanding non-surgical result. Dr S.R.Narahari (a Dermatologist) and Dr K.S. Bose (a Homeopath) compared notes for many years before the IAD was formed with a group of doctors and specialists from a variety of areas. All were focused on relieving the suffering caused by these neglected diseases, and the patient’s well being was always put first. I am impressed by the humility of professionals who can come together in this way to combine Homeopathy, Ayurveda and Allopathy (biomedicine) into a successful program that can be translated from clinic or camp to home based treatment.

Another remarkable thing about the IAD is their humanity and dedication to relief of suffering; no one is turned away. The government does not fund this hospital. Wealthier

patients are asked to sponsor poorer patients.

Every morning Dr Narahari comes to the IAD and consults with his colleagues on the best course of treatment for each individual new case. He does morning rounds, and then drives into the centre of town to his other separate clinic. In order to help keep the IAD going, he doesn’t draw a salary from it! Before the clinic was built, a very devoted colleague from abroad offered to sell his house to fund the construction. This ended up not being necessary but illustrates how important the IAD is in the world and how it attracts a cheerful devoted staff of selfless people.

Learn more about LF in India Many readers know of the pain and frustration of living with lymphedema first hand. I hope this article has given some insight into the horrendous suffering brought on by LF. Thankfully the IAD plays an important role and is making a difference.

For more information on how you can help, please visit their website www.iad.org.in LP

Photo: R. Kelly

A family’s experience I spent a lot of time with Manjunath, a 30 year old man who has suffered from LF since he was 12 years old, and Oomesh, his younger brother (pictured here). Coming from a rural area some 450 km away, they had experienced many other treatments in the big hospitals yet Manjunath’s condition was only getting worse, affecting his emotional and physical state.

Their family had long ago sold their land in order to pay for their son’s treatment. As the eldest, he has the responsibility to take care of the family and this was impossible with his LF. He also felt very sad that his younger brother had to take care of him, as this is not the order of things in India. Both young men came to the clinic with determination and a focus on learning everything properly. Oomesh has the focus of a surgeon and became highly skilled at everything, especially bandaging.

He never left his brother’s side and concentrated on every element of care. It was a real joy to watch them work together and after three weeks they left the clinic with a 50% reduction in Manjunath’s legs, feeling lighter and optimistic about the future. Manjunath and Oomesh are pictured throughout this article.

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Summer 2014

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Clinical Perspectives

An overview

Lower Limb Lymphedema

after Gynecological Cancer Surgery

By Mei Fu, Kun Li and Jeanna Qiu

Risk Factors Research has identified that risk factors for lower limb lymphedema include the removal of pelvic lymph nodes, post-operative radiotherapy and other factors. Removal of pelvic lymph nodes can significantly reduce the flow of lymphatic fluid from

the lower limbs (Tada et al., 2009). Postoperative radiotherapy was found to be an independent risk factor for lower limb lymphedema (Tada et al., 2009).

Lymphedema risk increases when a surgery or radiotherapy is more aggressive and more anatomically disruptive (Kim and

Recognizing

Early Signs Feeling of heaviness Pain n Swelling Discomfort

Photo: CanStockPhoto

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ower limb lymphedema is a debilitating adverse effect of surgical treatment for gynecological cancer (Beesley et al., 2007; Ohba et al., 2011). Like primary lymphedema and breast cancer-related lymphedema, lower limb lymphedema related to gynecological cancer is incurable and chronic in nature.

Prevalence of lower limb lymphedema after surgery has been reported with a vast range from 1% to 49% depending on lymphedema definitions, lymphedema measures, type of gynecological cancers, and time to assess lymphedema after cancer surgery (Beesley et al., 2007).

Lower limb lymphedema leads to important functional problems that negatively affect gynecological cancer survivors’ daily living, work, emotional state, and overall quality of life as well as leading to financial burdens (Ohba et al., 2011).

Choi, 2012). Patients undergoing a limited or diagnostic lymph node dissection followed by pelvic irradiation had a 25% to 30% incidence of lower extremity lymphedema, versus a 66% incidence in patients undergoing pelvic irradiation after a complete or therapeutic dissection (Pilepich et al., 1984). Other personal factors that may contribute to the development of

Dr. Mei R. Fu, PhD, RN, ACNS-BC, FAAN is Tenured Associate Professor of Nursing at the New York University. She is a Fellow of American Academy of Nursing, a Fellow of Geriatrics at the Hartford Institute of Geriatrics, and a Fellow of New York Academy of Medicine. Her scientific focus has been on cancer-related lymphedema.

Dr. Kun Li, PhD, RN is an Associate Professor of Nursing, Jilin University, China and Jeanna Qiu is a Summer Research Intern, New York University.

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lymphedema after cancer treatment are age, obesity, gene mutation and long travels (Vojackova et al., 2012).

The initial onset of lower limb lymphedema usually appears as leg swelling and typically occurs within the first 12 months following gynecological cancer treatment; however onset can also occur many years later. Unfortunately patients following gynecological cancer surgery have a life-time risk for lymphedema.

Once lower limb lymphedema has developed, the condition very often becomes chronic. Along with swelling, survivors often suffer distressing symptoms of heaviness, discomfort, and pain, exerting tremendous difficulties in survivors’ physical mobility and function (Beesley et al., 2007).

Assessment Current criteria for the staging and grading of lower limb lymphedema vary in the literature. Multiple measurement methods have been used in clinical and research settings, including circumferential girth by tape measurements, water displacement, and infrared perometry.

Circumferential girth measure by tape is the method used most often. However, the accuracy of measurement can be affected by many factors such as the width and the tension of the tape and more importantly, an inconsistent process. Water displacement is an inexpensive method historically believed by many experts to be the gold standard of lymphedema measurement. Disadvantages of this Summer 2014

technique include limited accuracy to detect swelling, no data on the location of the swelling, observer variability, and the inability to use this method when patients have wounds and infections.

Infrared perometry uses an optoelectronic device consisting of optoelectronic sensors to measure limb volume. It provides an objective evaluation of limb volume, but is very costly (Hareyama et al., 2012).

Subjective assessment of patients’ self-report of lymphedema symptoms is also used to identify women with or at a high risk of developing lymphedema (Carter et al., 2010).

Photo: M. Fu

Management There is no curative therapy for lower limb lymphedema. The goals of treatment or therapy focus on reducing the distressing symptoms of swelling, pain, heaviness, or discomfort, improvement of physical function, and overall quality of life. Patient education on self-care and effective lymphedema therapy by certified lymphedema therapists is crucial to the successful management of lower limb lymphedema.

Early detection is the key to timely lymphedema therapy and long-term success in the management of lower limb lymphedema. Pre- and post-treatment education on the risk factors and importance of recognizing early signs of lymphedema

(such as feeling heavier, pain, swelling or any discomfort) should be provided and emphasized to patients to prevent these. Early signs not being recognized or being ignored by patients leads to delayed diagnosis and timely treatment (Lazzaro, 2009). It is critical that patients monitor symptoms related to lower limb lymphedema for early detection and to identify impending Summer 2014

infections or exacerbations of existing lymphedema. Special attention should be given to those undergoing radiotherapy following cancer surgery. Once lymphedema is detected, it is important to inform patients about treatment options and methods of managing lymphedema (Petrek et al., 2000).

Complete Decongestive Therapy (CDT) is the most widely administered treatment option in the United States. CDT consists of two stages, intensive and maintenance stage. CDT involves elevation of the swollen limb, manual or pneumatic lymph drainage, compression bandages and garments, exercise as well as skin care (Liao et al., 2012). Manual lymph drainage is administered by a trained therapist, preferably a certified lymphedema therapist by Lymphology Association of North America (LANA) (for more detailed information go to www.clt-lana.org). The therapist uses light pressure on the skin and subcutaneous tissue to increase reabsorption of the lymph and its propulsion or forward motion through the lymphatic vessels. A pneumatic lymph pump drains lymph by using multiple pressure chambers powered by electricity. The chamber(s) is gradually filled with air in the direction of lymphatic drainage using certain pressure. The use of non-stretch compression bandages and garments can improve the lymphatic flow by giving a specific graduated pressure to the lymphedematous limb (Sawan et al., 2009). To prevent infection and minor trauma, or skin cracking, daily skin care is essential. Patients should be instructed to use warm water and soap to clean and dry the skin of the affected area and apply moisturizer to keep the skin moist. (Kim and Park, 2008).

Surgical treatments, including lymphaticovenous anastomosis, microsurgical techniques for lymphatic grafting and omental flap placement, have been recently reported.

However, these methods are not always satisfactory (Campisi et al., 2010).

Conclusion There is a lack of standard criteria for the staging and grading of lower limb lymphedema. The urgent issue for different international professional organizations is to establish global assessment guidelines to facilitate research and clinical practice to

Risk Factors n Removal

of pelvic lymph nodes n Postoperative

radiation therapy n Extent

of surgery n Age

n Obesity

n Gene

mutation n Long

travels ensure early detection and timely treatment.

Patients may benefit from services offered by rehabilitation professionals and psychosocial or emotional support. Patients undergoing gynecological cancer treatment need, at a minimum to be educated about the risk factors for developing lymphedema and about self-monitoring so that early detection and timely treatment can be achieved. There is also a need to develop clinical practice guidelines focusing on professional education, lymphedema recognition and intervention strategies to increase awareness among health professionals and patients at risk for lymphedema. The increased awareness could assist in early detection and timely management of this chronic condition. LP

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

Editor’s Note: In Canada, patients seeking treatment for lymphedema are recommended to go to a certified lymphedema therapist who meets the Canadian Lymphedema Framework Consensus Statement for lymphedema training standards and has a minimum of 135 hours of post graduate training from a school that teaches to the LANA standards.

Visit www.lymphedemapathways.ca for the full consensus statement.

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Global Views

Creating Global Opportunity and Changing a Nation

By Robyn Byork

f you could change a nation’s history and eliminate a disabling form of lymphedema, would you do it? Here’s an amazing opportunity to do just that in Haiti! Through collaborative efforts of the World Alliance for Wound & Lymphedema Care (WAWLC), Nova Southeastern University (NSU), the University of Notre Dame and the International Lymphedema & Wound Care Training Institute (ILWTI), in conjunction with the World Health Organization (WHO) and the Haitian Ministry of Health, the suffering from lymphatic filariasis (LF) in Haiti may soon fade into a distant memory.

Lymphatic filariasis (LF) infection occurs when filarial parasites are transmitted to humans through mosquitoes. Globally, an estimated 120 million people are currently infected, with about 40 million disfigured and incapacitated by the disease. Lymphatic filariasis is endemic in Haiti. Associated pain and profound disfigurement lead to permanent disability, and mental, social and financial losses contribute to stigma and poverty. According to WHO, “Eliminating lymphatic filariasis can prevent unnecessary suffering and contribute to the reduction of poverty.” In Haiti, where 54% of the population earns less than $1 per day, victims of LF are in dire need. But hope is on the horizon.

In 1997, the University of Notre Dame (South Bend, Indiana) launched a LF initiative in Leogane, Haiti, at the Hospital St. Croix, which has included years of extensive research under the direction of Fr. Thomas Streit, CSC. In 2000, the Global Alliance to Eliminate Lymphatic Filariasis (GAELF) was formed with the sole purpose of bringing together a

Photos: R. Bjork

I

Haitian clinicians receiving CDT certificates by H. Hettrich (L) and R. Bjork (R). diverse group of public-private health partners to support the Global Programme to Eliminate Lymphatic Filariasis (GPELF), which is based in the World Health Organization. By mobilising political, financial and technical resources to ensure success, the collaborative partners established a plan to eliminate LF as a global public health problem by 2020. In Haiti, the Ministry of Health and Population (MSPP), working with partners, started Mass Drug Administration (MDA) in the areas where the highest prevalence of LF had been identified by distributing an annual dose of Diethylcarbamazine Citrate (DEC) and Albendazole to the eligible population. Eventually, an integrated NTD control program combining the LF and STH programs was created and program partners, including IMA World Health, the University of Notre Dame and the Centers for Diseases Control began a planned scale up to achieve national coverage for MDA. After years of annual mass drug administration of over eight million Haitians, this country is now poised to reach the goal of complete elimination of LF transmission by 2020.

Robyn Bjork MPT, CWS, WCC, CLT-LANA, CLWT is the CEO and Founder of the International Lymphedema & Wound Care Training Institute.

She is a Physical Therapist, Certified Wound Specialist, and Certified Lymphedema Therapist.

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

In the wake of the national MDA initiative, Dr. John M Macdonald, has forged the vision to establish active clinical treatment of lower extremity LF lymphedema in Leogane. As founder and medical director of the Wound and Lymphedema Clinic at Hospital Bernard Mevs Project Medishare in Port-au-Prince, Haiti, and Secretariat for the World Alliance for Wound and Lymphedema Care, Dr. Macdonald’s passion is to “train the trainer” so that Haitian clinicians can provide care for other Haitians who are afflicted with LF. Through generous supply donations by WAWLC, and in line with their global mission to “work in partnership with communities worldwide to advance sustainable prevention and care of wounds & lymphoedema in settings with limited resources”, teams of Haitian clinicians have now been trained in Complex Decongestive Therapy (CDT) by lymphedema specialists from Brazil, NSU and ILWTI. Learn more about WAWLC at: www.wawlc.org.

With Haitian clinicians now fully trained and the building prepped for clinic opening, NSU in Fort Lauderdale, FL, has assumed the administration and funding of the project.

NSU professor Heather Hettrich will direct the new NSU Lymphatic Filariasis Haiti Initiative, including clinical care, protocols and research.

Coupled with this effort, Robyn Bjork CEO and Summer 2014

Founder of ILWTI, has created an International Lymphedema Specialist Certificate to encourage volunteerism and create opportunity for Certified Lymphedema Therapists (CLTs) to advance their expertise by way of medical missions in the Haitian lymphedema clinic.

Also, new graduates of ILWTI’s CDT certification courses will be able to immediately apply their skills by treating advanced cases of lymphedema in Haiti, under the direct mentorship of seasoned Certified Lymphedema Therapists. Learn more about ILWTI’s educational programs at: www.ilwti.com In Leogane alone, there are over 2,000 individuals with lower extremity LF lymphedema and over 9,000 with scrotal lymphedema who are anxiously awaiting treatment. Nationwide, there’s roughly 22,000 and 200,000 respectively. As we move forward, Leogane will serve as an epicenter for training and treatment.

The goal is for expansion into other areas of Haiti via four additional satellite clinics.

Managing lymphedema in a resource limited setting can be daunting, but achievable. Keys to success include international

Antoinette’s leg before treatment and two days after treatment. collaboration, donations, and creative use of limited resources. Bjork and Hettrich are currently working with Haitian staff to develop and implement novel protocols. A step-wise progression from group education for hygienic care and self-MLD to intensive CDT has yielded impressive preliminary results. Large lymphatic lobes, which had been present for many years, look like deflated balloons after only two days of intensive CDT, with reduction of calf girth of 10cm or more. Recycling short stretch bandages and protecting them from rain and mud are other techniques used to stretch the budget and treat more patients. Generous

donations from WAWLC, Bandages Plus, CircAid, MEDI, Farrow Medical, Hartmann USA, and others, as well as travel assistance

by MediHelping and shipping of supplies through Project Medishare all contribute to the success of the mission.

If we all work together, in a mere decade we will change the history of a nation.

This is an exciting global opportunity for all of us who have a passion to prevent and treat lymphedema. Let’s leave a legacy. To learn more about donating used compression garments or volunteering as a CDT therapist visit www.ilwti.com. LP

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This course provides certification in Manual Lymph Drainage (Vodder Technique) and Complete Decongestive Therapy according to the rules and regulations set by the Lymphology Association of North America (LANA).

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

Clinical Perspectives

Reviewing a Breast Cancer Rehabilitation Program

By Andrea Tilley

I

t is widely held that breast cancer surgery and treatment can result in arm morbidity on the affected side such as reduced shoulder range of motion (ROM), pain and lymphedema.1-14 A prospective surveillance model for breast cancer rehabilitation was proposed in a supplement to Cancer journal in April 201218. This demonstrated evidence that there are common physical impairments that arise from breast cancer treatment which are amenable to physiotherapy. Proposed were regular physical assessments and early therapeutic intervention for these impairments in order to optimize physical recovery in the growing survivorship community.

The inconsistent delivery of rehabilitation to women with breast cancer in New Brunswick may mirror that in the other provinces. While several communities are fortunate enough to have a hospital-based certified lymphedema therapist, many do not. Often people must travel several hours for therapy and still more are unaware that treatment exists. Organized general breast cancer rehabilitation services are few.

In Saint John, New Brunswick, a program of organized, evidence-based breast cancer rehabilitation is available to all women with breast cancer with the prospective surveillance model in mind. This physiotherapy program has been in operation for five years.

Purpose This article reports on a review of the discharge summaries of 95 patients who

completed the 12 months of physiotherapy follow-up and to report some of their outcomes.

This review could perhaps lead to a more thorough prospective study of women entering the breast cancer rehabilitation program.

Program description All women scheduled for lumpectomy or mastectomy, are automatically referred to the physiotherapy department for FIGURE 2 FIGURE 1

Outcome Measures Flow Charting

pre-operative physiotherapy assessment of arm range of motion and volume.

(Figure 1) Current activity level is noted.

A compression bra (Figure 2) is fitted, to add comfort and prevent swelling as long as a drain or swelling is present. Immediate post-operative activity guidelines, our

Andrea Tilley, physiotherapist (1992) and CLT (2000) established the first hospital-based lymphedema Treatment Program in the Atlantic Provinces.

Andrea, a CLF and ACLN member, participates in national and international lymphedema research, and has presented at national conferences. In 2009, she developed a breast cancer rehabilitation program for Saint John, New Brunswick.

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

Breast Cancer Recovery Guide and the follow-up appointment are given.

Instructions and reading material are kept to a minimum pre-op as women are often overwhelmed with information and emotion at that time.

At one week post-op, the patient returns for re-assessment and teaching of shoulder ROM exercises. Cardiovascular activity is recommended to gradually build to 3-5 hours per week. Evidence suggests that this amount of weekly activity will reduce recurrence rates.15 Women are provided with a walking journal (Figure 3). They are encouraged to record the minutes per day that they participate in continuous exercise such as walking (but could include any vigorous aerobic activity such as biking, swimming, aerobic activity). continued on page 16 Summer 2014

PROBLEMS: REDUCE the symptoms of:

• Swelling

decreases microcirculation reduces immune function

• swelling • infection • inflammation

• Restricted movement

deterioration of the microcirculation LYMPHDIARAL® Drops LYMPHDIARAL® Sensitive Cream LYMPHDIARAL® Drainage-Cream

FIGURE 3

Walking Journal As well, depending on how many lymph nodes were removed, education regarding individual likelihood to develop lymphedema (LE) is given, as well as risk reduction techniques for lymphedema. Risk reduction is focused on prevention of infection, achieving full arm ROM and function and maintaining optimal body weight.

If required, women will schedule subsequent physiotherapy appointments for

assisted ROM and soft tissue mobilization until they achieve their pre-op ROM. If axillary cording develops, more visits may be required. Once 100% of pre-op ROM is achieved, a six month follow up will be scheduled. Then, if shoulder ROM is maintained, a woman is pain-free, has no LE, and scar tissue is moving well she will be scheduled for the 12 month follow-up. If she shows new physical impairments they will be addressed as previous.

It should be noted that if a woman is found to develop lymphedema, she will be fitted for a compression arm sleeve 20-30 mmHg. If she presents with more than 2cms difference at more than 2 circumferences, she will be offered Complete Decongestive Therapy. Our current criteria for diagnosing LE includes a 1 cm increase at 2 or more arm landmarks or the presence of pitting edema anywhere in the arm, breast or chest wall.

At the 12 month follow-up a woman is re-assessed and if there are no impair-

TABLE 1

Type of Mean N=95 Arm Breast Arm & Breast Node Sampling Age 64.2 years LE LE LE

SNB 53 2 8 2 AND

36

6

2

0

None

6

0

0

0

TABLE 2

Outcome Measures 12 mos F/U

Overall N=95

SNB N=53

AND N=33

Pain

17

6 (11%)

9 (27%)

<100% ROM

18

8 (15%)

9 (27%)

Scar restriction

22

N/A

N/A

3-5hrs/wk walking

44

N/A

N/A

Lymphedema

20

12 (23%)

8 (24%)

Cording

20

6 (11%)

14 (42%)

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

ments she is discharged and a Discharge Summary is completed.

Results 95 discharge summaries were used in the compilation of results for this paper.

A simple Excel spreadsheet was used to enter data from discharge summaries.

The mean age of the 95 women was 64.2 years. 36% had undergone full axillary node dissection (AND) and 58% had undergone sentinel node biopsy (SNB).

6% had no nodes removed. n 18% of women reported pain at 12 months post-op; however it was only 12% who developed pain over the 12 month period as 6% reported pre-op pain as well. n Overall, 80% of women regained their pre-op arm ROM. 78% of the AND and 83% of the SNB groups regained full ROM. n 24% continued to experience scar tissue mobility restriction. n 48% were getting the recommended 3-5 hrs per week walking or equivalent activity at 12 months post op. n 21% or 20 of the 95 women developed lymphedema (LE). 15% of SNB had breast LE and 27% of AND had arm LE. Overall, 10 (10%) had breast LE, 8 (8%) had arm LE while 2 (2%) experienced both concurrently. All of the SNB patients who developed LE had it in the breast and 2 of those experienced arm as well. n 22% of women experienced lymphatic cording following surgery. Most were immediate onset, though a few were delayed. Half of those women had cording continue beyond six weeks post-op and one quarter still had evidence of cording at the 12 month follow-up. 6/20 (30%) of the women with cording did not have full ROM at 12 months.

Discussion n Our rates of failure to regain full ROM were similar in both AND and SNB groups, although developing cording increased that likelihood from 20% to 30%.

Summer 2014

n Scar

restriction did not appear to affect development of LE as only 4/22 scar restricted women developed LE. The most common type of LE after SNB was breast and after AND was arm. n Our rates of LE development were higher than typically reported for SNB perhaps because we considered breast LE when most studies do not. Also the criteria for arm LE diagnosis was much more inclusive than is typically seen in studies as any woman with pitting edema in the arm was included. n Our rate of incidence of cording is lower than that reported in other studies16,17. n Almost half of women were following the recommended activity guidelines at the one year mark.

Limitations The bias of this study may lean toward more physical impairment as all of these women returned for the scheduled 12 month assessment without incentive or reminder. They

may have been seeking treatment for those impairments. In creating a prospective data base going forward, expanding the discharge summary to include more detailed data on pre-post activity levels, a more thorough reporting of surgery and treatment specifics and weight gain, program adherence and reasons for failing to follow up would allow for more comparison between groups.

We were unable to complete more than 34 assessments with our quality of life tool FACT-B. We had many women upset and others decline due to the very personal nature of some items within. A more appropriate QOL tool should be used in the future.

Conclusion This program is an example of the proposed â&#x20AC;&#x153;Prospective Surveillance Model for Rehabilitation for Women with Breast Cancerâ&#x20AC;?.18 Currently, a randomized controlled trial is underway led by Dr. K. Campbell in BC comparing

Survivorship Care Plans are gaining approval in Cancer Centers in North America and Canadian Physiotherapists need to get involved. post-op surveillance and physiotherapy versus standard post-op care without the surveillance.

Survivorship Care Plans are gaining approval in Cancer Centers in North America and Canadian Physiotherapists need to get involved in order to help breast cancer survivors reach their physical potential following treatment. LP

A full set of references as well as the physiotherapy outcome measures chart can be found at www.lymphedemapathways.ca

Victoria Vancouver Winnipeg Toronto Montreal Chicoutimi Fredericton Halifax

Train in Canada

Summer 2014

L y m p h e d e m a p a t h w a y s . c a 17

Case Study

Treating a Patient with

Lymphedema due to Filariasis

By Nadine Maraj-Nyiri

Background A 55 year old female, (C.B.) works as a cook, providing services from home and caring for the needs of her family. Her concern was that despite her efforts to use a variety of compression materials, she still had pain, swelling and heaviness in her leg, which impacts her activities of daily life since developing swelling in her left leg 31 years ago in India.

Leg Treatment Progression

BEFORE

Initial assessment AFTER

After fourth treatment

She was diagnosed with Etiology lymphedema due to and history filariasis (LF), which is C.B. noticed prolonged not uncommon in India. swelling in her left leg and In Canada, a vascular foot in 1981, while living specialist put her in contact near the sea shore in the with her local Community suburbs of Bombay, India.

Once her left foot and Bandaging during treatment Care Access Centre (CCAC) in 2011. The CCAC bandaged her leg started to swell, she leg and changed the bandages throughout tried compression bandaging plus a variety the week. C.B. was still experiencing pain of Ayurvedic (Indian medicine) treatments.

Nadine Maraj-Nyiri, RMT is a Registered Massage Therapist trained in the Vodder method of complete decongestive therapy by the Dr. Vodder School.

She works at the Dalecliff Medical Centre in Toronto, Ontario. She was the Co-chair of the Canadian Lymphedema Framework, Education Working Group from 2011-2013 and is still an active working member of this group.

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

Photos: N Maraj-Nyiri

Introduction This case study examines the success and reduction one can achieve when all aspects of Complete Decongestive Therapy (CDT) are implemented. It highlights the value of a multi-disciplinary and multi- healthcare approach, working together with family support, to help this patient manage their lymphedema. This case is of special interest to patients and therapists alike, due to the unique etiology, which is uncommon in the landscape of lymphedema manifestation in Canada.

and her leg would swell as soon as the bandages were removed. CCAC suggested getting compression stockings. A garment fitter suggested she get CDT treatment from a certified therapist in the community to reduce the size of her limb and learn self management techniques in order to maintain the reduction, before purchasing compression stockings.

Co-morbidities and factors impacting treatment The patient has Type II diabetes, high blood pressure- controlled with medication and obesity contributing to these co-morbidities.

She had extreme financial constraints and could only afford a limited number of treatment sessions which she worried would Summer 2014

negatively impact her treatment outcomes.

Another concern of hers was the very deep groove at the ankle joint, caused by the swelling and lobular shape of the lower leg. Previously she had experienced pain and infection in this groove because the bandaging would get buried. Her altered gait also caused pain in her hips, due to how much heavier the left leg was compared to the right.

Treatment plan We prescribed four treatment sessions. The initial visit included a review of the lymphatic system and how filariasis may have affected her lymphatic vessels. A clear treatment plan, based on her financial circumstances was mutually created and outlined, describing all four parts of CDT in detail. Family members were present and discussed that they would all adjust their schedules, attending daily to the lymphatic self massage and bandaging routine at home.

Three remaining treatments were spaced out at approximately one visit every three weeks. C.B. was instructed to come in with her leg bandaged in the last two sessions.

Manual lymphatic drainage for the left leg lymphedema was provided along with a review of her self-massage routine and bandaging to ensure the home care routine was being done safely and effectively. The leg was re-bandaged at the end of each treatment with a variety of padding materials and short stretch bandages.

Assessment At the initial visit, we compared and measured her right leg to her left. Although a picture of both legs together was not taken for comparison, C.B had no complaints regarding her right leg and it exhibited healthy tissue. The skin of the left leg was warm, very taut, shiny, red and pink along the dorsum of the foot and lower leg. The swelling was limited to this area and did not have a significant impact on her left thigh.

For this reason and to maximize our time, we measured only up to the knee. No pitting edema was evident but the skin had become thicker over the toes and dorsum of the foot and distal leg. During treatments 2, 3 and 4, circumference measurements were taken Summer 2014

TABLE 1

Volume of affected leg (ml)

Treatment #2

Treatment #3

Treatment #4

6718 (initial measuring)

5804

4743

914 less compared to initial measurement

1975 less compared to initial measurement

Difference —

TABLE 2

Volume (ml)

Treatment #2

Treatment #3

Treatment #4

2929

2016

954

and recorded at the beginning of each visit.

These were compared to her non affected leg, and to the affected leg’s previous treatment measurements. Her bandaging and self care routine were assessed each visit to see where things could be improved and to highlight areas where homecare had improved.

Therapist reported treatment outcomes Volume reduction by percentage: Upon initial measurement, the affected leg had an excess volume of 77% compared to her right leg. During the second visit the affected leg reduced to having only 53% excess volume and at the last treatment the limb had 25 % excess volume than the unaffected right leg. As C.B.’s self massage and bandaging improved, her swelling reduced, as shown in the graph.

Volume reduction in millilitres (ml) Table 1 compares the volume of the left affected limb and the difference in volume, compared to the right unaffected leg over the series of treatments. Table 2 indicates the excess volume of edema (ml) compared to the unaffected leg.

In summary, C.B. had a total volume reduction of 1975 ml in her affected left leg. The volume of her unaffected right leg was 3789 ml. C.B had an excess volume of 954 ml compared to her right leg. She reduced by 67% compared to her unaffected leg.

Patient self-reported treatment outcomes C.B. now wears compression stockings

three times per week, and bandages the other days. She is proud of her ability to maintain a daily homecare self massage and bandaging routine, addressing her chronic lymphedema. She walks the corridors in the building where she lives, goes to Yoga when possible and has become more concerned with her diet – losing 10 pounds. C.B. felt she could walk with increased ease, less pain in both legs and hips, stand longer and do more in her daily life. C.B. had experienced the importance of all components of CDT realizing that not just bandaging helps reduce the size of her leg.

Summary The rapid reduction of lymphedema due to filariasis examined in this case study demonstrates the importance and need for each component of CDT to be implemented properly. The multidisciplinary healthcare approach, along with family support, proved to be an invaluable resource in the successful treatment of this unique lymphedema. These resources combined, empower the patient to successfully manage their condition with confidence. LP References 1. W eissleder H, Schuchhardt C, eds.

Lymphedema, Diagnosis and Therapy 4th edition. Viavital-Verlag GmbH, Essen; 2008.

2. www.news-medical.net/health/What-is-Filariasis.aspx 3. www.cdc.gov/parasites/lymphaticfilariasis/ gen_info/faqs.htmlwww.news-medical.net/ health/What-is-Filariasis.aspx L y m p h e d e m a p a t h w a y s . c a 19

Patient Perspectives

By Diane Martin

N

ever in my wildest dreams did I ever not cancer. Little did I realize at the time think I would be the President of a Lymphthat the lymphedema would be a constant edema Association. I had never even heard of reminder for me of the cancer. the word lymphedema. Then things changed Then in 2007 I was diagnosed with breast permanently for me in ways both subtle and cancer again. This time I went through surgery and six months of very strong significant, when I was diagnosed with breast chemotherapy. I think that as hard as cancer and later, lymphedema. I embarked it was to go through the cancer treatment on one of life’s most profound journeys. it still was not as hard as being diagnosed with I was first diagnosed with breast cancer lymphedema. It might have been because I in 2000. My father had recently passed away knew what cancer was and knew what just two weeks after being diagnosed with cancer and that the treatment would be but knew was still fresh in my mind. nothing about lymphedema.

Little did I realize All I could think of when I do not remember my my doctor told me I had surgeon, oncologist or at the time that breast cancer, was that any health professional the lymphedema I had only two weeks to talking to me about what would be a constant live as well. I remember I should or should not reminder for me thinking I didn’t want to do to protect myself from die. I wanted to grab and lymphedema post- breast of the cancer. hold tight to my husband cancer. Once I found out that I had lymphedema I Doug and be with my family. started to call clinics looking for I endured surgery, six months of answers to my questions and to find chemotherapy and one month of radiation. out about treatment. After a very long In 2002 I was showing my Old English search I finally found a certified lymphsheepdog and somehow cut my finger. I was edema therapist (Kirsten) who not only got concerned not to get blood on my dog and my swollen arm down to a size that I could applied a band-aid. However, from the cut I put a normal shirt on, but also had the ended up with a serious infection called cellulitis. This is what started my journey, living answers to the questions I had been asking with lymphedema. I remember thinking that about lymphedema. my arm was swelling because my cancer was While I was being treated, Kirsten and I back and so I was relieved to find out it was talked about how hard it was for me to find

Diane Martin is a second generation Calgarian married to another second generation Calgarian (Doug). She is President of the Alberta Lymphedema Association and also volunteers with the Canadian Breast Cancer Foundation and the Famous 5 Foundation. Diane enjoys being a member of the Sistership Breast Cancer Dragon Boat team.

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

Photo: CanStockPhoto

Embarking on one of life’s most profound journeys

someone that could help me and that I could not be the only person that was looking for help and education about lymphedema.

We ultimately gathered together a group of people that would be willing to help and most importantly volunteer their time to get an association going to help lymphedema patients. After many forms, phone calls, emails and hard work we established ourselves as the Alberta Lymphedema Association in Calgary in August of 2003.

We have grown a lot over the past 11 years and have touched many people with lymphedema. We have connected patients to other patients, helped patients by sending information to their physicians and worked hard to advocate and raise awareness for this condition. We also collaborated with other provinces and supported each other with information and documents to help support local efforts.

In 2014 our association made history by working with the Alberta Health Services and being the first province to have treatment fully funded for not only cancerrelated lymphedema patients but primary and non-cancer lymphedema patients as well. I am so proud of what we have accomplished so far. I will continue to advocate and help educate anyone that needs to know about lymphedema. It will be an exciting day when lymphedema is a word that all people will know. LP Summer 2014

Affiliate Profile

Alberta Lymphedema Association The Alberta Lymphedema Association (ALA) is a charitable organization founded in 2003 by a team of people who recognized the need to help people living with, or at risk of, lymphedema. A learning association committed to ongoing education of its stakeholders, ALA works to make a difference and empower affected individuals and their families to help manage this condition.

ALA works from the patient standpoint.

ALA’s mission statement: We are a Voice for Lymphedema Their vision: People with and those at risk of lymphedema are in optimal health The organization’s goals: • Educate and inform the public regarding the causes and management of lymphedema • E ducate and inform doctors and medical personnel to help people with lymphedema • E mpower affected individuals and their families to manage this condition •S upport and encourage the advancement of lymphedema research •R aise funds to achieve the goals of the Alberta Lymphedema Association.

A brief history: 2006 – Produced and submitted petition so that lymphedema patients would get the needed treatment paid for by Alberta Health Service (AHS), which was tabled in the legislature. All Alberta breast cancer lymphedema patients receive treatment paid for by AHS. 2007-2009 – Letter writing campaign and advocacy meetings plus face-to-face with the Health Minister (2009).

2010 – Held first lymphedema symposium with 400 people attending. Met with deputy health minister, requesting funded treatment for all lymphedema patients. As a result AHS established a lymphedema working group which included ALA representation.

2011 – First meeting of the AHS Lymphedema Working Group.

2013 – Held second symposium at which we announced that a clinic to treat primary Summer 2014

and non cancer lymphedema patients would open in Calgary. ALA was asked to be on an Advisory Clinic Committee to help with the logistics.

2013-2014 – With the opening of the clinic AHS has set up a Patient Advisory Group.

Diane Martin was honored to have been asked

to co-chair with Lisa Warner (AHS Director Calgary Zone). LP Contact the ALA for local resources in Alberta including a listing of certified lymphedema therapists in the province. www.albertalymphedema.com

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Ask the Expert

Where to find help

Community organizations are an excellent resource

By Anna Kennedy

Q

I have recently been diagnosed with lymphedema and find it a challenge to find support and resources from my health professionals. Where can I get the help and answers I need?

who has been certified according to the Canadian Lymphedema Framework’s Why can’t I get this help from my standards for training. health professional team?

These lymphedema It is unfortunate that there are still experts have all received a In Canada, the average time that a minimum of 135 hours of post graduate many health professionals who are not training on the lymphatic system from a medical professional receives in their familiar with lymphedema and the treatment You have access to information, resources, contacts and support from people who know what you’re going through from school that is approved by LANA standards. four years of training is 15 minutes on the that can help their own personal experience.

You have the following organizations on your side.

A list of certified lymphedema therapists lymphatic vascular system. There are many alleviate some other competing diseases and conditions that can be found by contacting your provincial of the symptoms Alberta: Lymphedema Association of Alberta lymphedema association.www.albertalymphedema.

Manual lymphatic don’t quite make the cut as well.

Therefore associated with drainage is only one of the components of it is unfair to wrongly judge your family this condition. It British Columbia: BC Lymphedema Association www.bclymph.org lymphedema care they can provide. They will physician or nurse practitioner. Instead, it is is important to of compression up to the Canadian LymphedemaofFramework, know that there Manitoba: Lymphedema Association Manitoba teach you the importancewww.lymphmanitoba.ca bandaging and garments, exercises you can provincial patient organizations and certified are provincial asOntario: Lymphedema Association ofawareness Ontario sociations whose do at home and importantwww.lymphontario.ca skin care. lymphedema therapists to raise sole mandate is to support patients living and advocate for change. Sharing this magaQuebec: of Quebec www.infolympho.org zine with your Association family health practitioner is one with lymphedema and their caregivers.

Most Lymphedema ? way of doing that. of these associations are led by individuals Saskatchewan: Lymphedema Association of Saskatchewan www.sasklymph.ca If you would like to have a question who have personal experience living with answered by an experienced I’ve heard about manual lymphatic lymphedema. They are an excellent source lymphedema health professional, drainage and want to know where for you to access where the fitters, therapists please contact us via email: I can obtain this treatment? and clinics are near you that can help. Most of them organize educational events such canadalymph@live.ca Although there are many people who as conferences or support groups. Some Be sure to put “Ask The Expert” may offer manual lymphatic drainage, it of them can also connect you to someone in your subject line. is very important that you only see someone with a similar experience who can give you Photo: CanStockPhoto

hope that things will change. A list of these organizations and their websites are listed on this page.

Photo: CanStockPhoto

Q You A Are Not AloneA

LP

HAVE QUESTIONS

Q A

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.

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 Inc.

www.sasklymph.ca

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

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Letters....

Letter to the Editor...

Dear Sirs We congratulate Dr. Mieke Flour on her recent article, “Understanding Cellulitis: A Serious Concern for Lymphedema Patients and Those at Risk”, which appeared in the spring 2014 issue of Pathways. The article emphasizes many important points regarding the diagnosis and treatment of this often neglected complication of lymphedema. Unfortunately the article perpetuates a longstanding myth regarding compression therapy and cellulitis. In Section 6 of the article, it states, “In the presence of acute infection, lymphedema management should be limited to limb elevation. Compression should be postponed until the acute infection is resolved.” On the contrary, in our opinion, compression therapy is a critical component of effective therapy for cellulitis.

It is known that there are numerous benefits from the use of compression therapy that will expedite the treatment of cellulitis.

The protein rich fluid in the lymphedematous tissues is “food” for bacteria making treatment more difficult. Compression therapy helps remove this high protein fluid from the tissues lessening its beneficial effect for the bacteria. Removing the fluid from the tissues, also, increases blood flow to the tissues1 and, in turn, increases the antibiotic concentration making treatment more effective. The clinical response of the tissues to the antibiotics when combined with compression therapy is much faster.

It has been our experience (Treadwell) that for patients with cellulitis treated in the hospital, the hospital stay can be reduced by three to four days when compression therapy is combined with antibiotic therapy. 2 This allows the patient to move to treatment in the outpatient setting much sooner.

Another benefit with prompt reduction of the edema in the extremity with cellulitis involves restoring the body’s self-defense mechanism. Peptides in the skin, defensins, are a natural barrier to invasion of bacteria. These peptides, especially the ones effective against Steptococcus organisms, are inactivated by edema fluid. Reducing the edema helps restore the body’s normal defense system.2,3,4 It has been suggested that lack of control of the edema with the resulting lowering of the natural defense mechanisms may be a cause of the significant recurrence rate of cellulitis. For these reasons, we strongly feel that compression therapy should be instituted or continued concurrently with antibiotic therapy. Despite widely held perception, there are no reported complications associated with this approach. Pain may interfere with implementation of compression therapy but this can be minimized by appropriately applied short stretch compression systems and analgesics.

Sincerely, Terry Treadwell, MD, FACS, Medical Director, Institute for Advanced Wound Care Montgomery, Alabama John MacDonald, MD, FACS, University of Miami School of Medicine Miami, Florida We would love to hear from you...

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

www.lympholino.com

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

Please email your enquiries to linotrade@aol.com or call (514) 846-1280 #2 24 L y m p h e d e m a p a t h w a y s . c a

Summer 2014

Helpful Suggestions

Hints and Tips The early bird gets the worm Research indicates that early detection and timely treatment are key factors to successful lymphedema treatment.

Be sure to pass on the early signs of feeling of heaviness, pain, swelling and discomfort.

LP

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

1-866-411-DIVA (3482)

COMPRESSION PATIENTS ACTUALLY WANT TO WEAR

Your patients deserve a compression garment that feels as good as it looks! LympheDIVAs® provides 20-30 mmHg or 30-40 mmHg medical compression in both sleeves and gauntlets — and we do it in something other than just boring beige. With a huge selection of patterns and two crystal additions, we provide medical compression that patients actually want to wear. All our garments are made in the USA with a state of the art breathable and moisture wicking fabric with 360° stretch.

WWW.LYMPHEDIVAS.COM

Summer 2014

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Photos: CanStockPhoto

Finding a lymphedema therapist Finding a certified lymphedema therapist should be easier than you think. Contact

your provincial lymphedema association for a list of qualified therapists who meet the new CLF training standards. These professionals have all met the minimum 135 hours of post graduate training on the lymphatic system and treatment.

THE VITALITY OF THE SEA

Google alerts Reading Pathways magazine is only one way of staying abreast of what is happening in the world of lymphedema. Here are two easy updates to incorporate into your daily life. Pub Med – searches will scour the latest research news that involves lymphedema and Google Alert – will send you email links about stories highlighted in the news regarding lymphedema.

Education

Canadian and International Events September, 3-7, 2014 Washington, DC

11th National Lymphedema Network International Conference. The Campaign for Lymphedema Care: Perspectives, Evidence & Practices Conference will be held at Washington Marriott Wardman Park. n www.lymphnet.org/2014conf

September, 11–17, 2014 Montreal, QC

ALT Aqua Lymphatic Therapy – Tidhar Method. The Lymphedema Association of Quebec is excited to be organizing a full Aqua Lymphatic Therapy (ALT) training in the Tidhar Method. For this session and other educational events throughout 2014 contact www.infolympho.ca

September, 19–20, 2014 Quebec City, QC

AQL/LAQ 10th Annual Lymphedema Conference. Targeting health care professionals, patients, government, suppliers and other stakeholders. Organized by the Lymphedema Association of Quebec, in collaboration with the Lymphedema Program of McGill University Health Centre. n www.infolympho.ca

March, 6–7, 2015 The Lymphedema Association of Ontario will be holding its 17th annual lymphedema conference for B358 Canada Cares Pathways Vertical_Layout 1 5/23/14 10:48 AM SAVE PageTHE 1 DATE. n www.lymphontario.org Toronto, ON patients and health professionals.

Help us find this year’s National Caregivers © 2014 Canada Cares Resource Network

Tell us about outstanding family or professional caregivers in your life.

• Regional awards for Western, Northern, Central and Atlantic Canada.

• The $10,000 Canada Cares One Wish Award will be granted to one exceptional application from anywhere in Canada.

Visit canadacares.org Nominations close September 15th, 2014.

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Canada Cares is a not-for-profit organization that celebrates and recognizes caregivers from coast to coast.

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

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

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

Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of Ontario Lymphedema Association of Quebec Lymphedema Association of Saskatchewan

Charitable Registration 85160 1260 RR0001

Summer 2014

Compression

Club

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

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

As health care providers, you play an important role in improving the quality of life of your lymphedema & chronic edema patients, especially when it comes to compression bandaging.

We invite you to visit our online compression club to network, ask questions, and learn from one another. Share tips & tricks, connect with colleagues, or ask the experts all your compression-related questions.

• discuss & share your own experience treating patients with lymphedema • learn from colleagues and industry experts • stay up-to-date on industry news and events

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