Pathways Spring 2019 (Volume 8, Issue 2)

Canada’s Lymphedema Magazine

Pathways

Acc Path ess w Onli ays ne See pag e4

SPRING 2019

Empowering patients and professionals

Diagnostic innovations

The long road to acceptance Aquatic exercise Self-care tips

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une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways 2019-02-28 8:20 AM

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Editor’s Message

Cheers!

To little victories, expanded knowledge, and a growing community

W

elcome to our 29th issue of Pathways.

With this publication now entering its 8th year, our Editorial Board remains dedicated to fulfilling its mission—empowering patients and professionals. That means diligently ensuring we get the balance right so our magazine stays relevant to patients and those who care for them. We hope you will agree that this issue has articles and topics that will interest all of you.

I would like to welcome Mei Fu, the newest member of the Pathways Editorial Board. We are honoured to have her join our team. The fact that we have added an American researcher to our board reflects how our audience is growing to include an increasing number of American subscribers who also enjoy our magazine.

Our Editorial Board remains dedicated to fulfilling its mission—empowering patients and professionals.

Pathways magazine is only one of the accomplishments that the Canadian Lymphedema Framework (CLF) is proud to have contributed to the lymphedema community. 2019 marks the 10th anniversary of the CLF. We are strongly positioned for another 10 years of success!

Imaging and diagnostics for lymphedema have seen tremendous changes in the

last 10 years. Although not all of the tools are readily available in all centres in Canada, we thank Mike Bernas for summarizing the technology currently used in some American centres and how improved diagnostics can help detect and manage lymphedema earlier for better outcomes.

Aqua therapy is helping produce better outcomes for lymphedema management.

Andrée Dionne and her team at “Gym Liquide” (University of Quebec in Montreal) have initiated a unique water immersion exercise program for people with lower limb lymphedema. Since training in water occurs with less of the effect of gravity, but with a multidirectional resistance, and natural compression, it seems like the perfect environment for participants with lymphedema.

Bonnie Lasinski has a lifetime experience of not only treating lymphedema patients but also teaching other therapists. She offers practical tips geared to patients wanting to manage their lymphedema as best as they can. Her key message is that each case of lymphedema is unique and as such, exercises and management techniques must be customized and adapted to fit each individual.

The beautiful young woman on our cover is Berlange Presilus. She shares her unique patient perspective of living with lymphedema and Klippel Tunnel Syndrome (KTS). Not as well known as lymphedema, KTS is a rare disease that is associated with

lymphedema and gets even less attention.

Be sure to check out Berlange’s amazing website (www.berlange.com) to read more about how she is using her modeling career to make statements about beauty being one’s attitude towards oneself and others.

Christine Moffatt is Chair of the International Lymphoedema Framework and an honorary board member of the CLF. Her researcher profile was a modest contribution to fit only one page—yet her list of lifelong accomplishments and contributions to lymphedema research could fill many, many more pages. We thank her for all her dedication and work.

Neil Piller is also with the International Lymphoedema Framework. He is not only an energetic and powerful presenter but through his extensive reading and wide-ranging thirst for knowledge, can always be counted on for pushing the limits of our traditional thinking about lymphedema. His thoughtprovoking article on the gut and its relation to the lymphatic system is no exception.

Happy Spring! LP

March 6, 2019

World Lymphedema Day! Anna Kennedy

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For many communities this also kicks off lymphedema awareness month.

We hope you will also take this opportunity to pass on your personal impact statement, and a copy of this magazine to your members of parliament to help promote awareness of lymphedema and advocate for the needs of all of those living with this lifelong condition. The accumulated efforts of many individuals have a tremendous impact. Here’s to success in moving forward to universal access to lymphedema care.

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Contents

5

Innovations in diagnostics

Early lymphedema detection and other benefits to diagnostic techniques.

Spring 2019

n

Volume 8 Issue 2

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 Angela Dunphy Mei Fu PhD RN FAAN Pamela Hodgson PT David Keast MD FCFP Lori Radke PT CLT Anna Towers MD FCFP Editor Anna Kennedy Editorial Assistant Nicole Boulet Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. While all material is subject to Editorial Board approval, inclusion does not constitute an endorsement or reflection of the views and opinions of the CLF and its Editorial Board.

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

Subscription Rates (1 year) Canada - $30.

United States - $60.

International - $75.

Single copies and back issues - $8.

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Aquatic exercise training and lymphedema The creation and studied benefits of an aquatic gym.

How training in water benefits the body.

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Researcher Profile

Christine Moffatt

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Collaboration and communication together as a community.

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Unusual relations or a delicate balance?

Microbes, gut, obesity, inflammation, brain function.

And the impact of good and not so good lymphatic drainage.

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The clinician and a patient’s routine and other useful tips.

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Case Study: Hybrid approach to treating severe lower-extremity lymphedema Combined decongestive therapy, self-care and surgery provides successful outcome.

The long road to diagnosis, acceptance, and advocacy

Stock photos in this issue: CanStock, Shutterstock, Dreamstime.

Other photos are courtesy of BSN Medical, A.Dionne, Impedimed, N.St-Pierre (UQAM), Phlebolymphology.com

ADDITIONAL INFORMATION:

Bitter journeys can have positive resolutions.

A reminder that life is what you make it.

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Hints and tips

24

Did you know?

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Canadian and International events

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Canada’s Lymphedema Magazine

Pathways

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Ac Pathcess wa Onlin ys e See page 4

SPRING 2019

Empowering patients and professionals

Diagnostic Innovations

TO ACCESS PATHWAYS ONLINE Login information: www.canadalymph.ca/pathways-online User name: Pathways Subscriber Password: Diagnostics

The long road to acceptance Aquatic exercise Self-care tips

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Subscriptions/return mail to Canadian Lymphedema Framework 4800 Dundas Street West, Suite 204 Toronto, Ontario M9A 1B1 Telephone: 647-693-1083 Email: pathways@canadalymph.ca www.canadalymph.ca

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

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Self-care: A therapist’s thoughts

une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways

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Research Advances

Innovations in diagnostics

Early lymphedema detection and other benefits to diagnostic techniques

By Mike Bernas

D

iagnostic techniques and tools for use for lymphedema are still far from complete and there are not many agreed upon standards. Although there are several common techniques with worldwide use, newer ideas continue to develop to improve the field.

First, let’s examine exactly what we mean by diagnostics for use in lymphedema. Is this looking just at confirmation of swelling? That certainly is a measurement utilized by many physicians, researchers, and payers (those who pay for the procedure) to document swelling as well as response to treatment. Can it be early detection of fluid build-up before swelling is apparent? This is attractive to medical professionals, researchers, and patients who want to know as soon as possible if swelling will occur (since we do know that earlier treatment is usually more successful). Should diagnostics be limited to identifying and documenting by imaging the underlying changes or impairments

to lymph fluid flow which leads to the development of swelling? Determining peripheral changes is certainly important for clear diagnosis from a medical (and insurance) point-of-view, but it does not always change treatment approaches and therefore may not be as important for the patient and therapist.

Volume measurements The most widely utilized method to measure the volume of a limb is using a tape measure1.

This is usually assessed at every 4 or 10 cm and then the values are entered into a mathematical formula to determine an approximate volume. A recent systematic review demonstrated that the interclass correlation coefficients (measure of consistency) in the upper limbs for both inter- and intra-rater were excellent (≥.98)2. The classic method for determining volume of the limb uses the Archimedes principle of water displacement. Although this method is used in some clinics, it has

Michael Bernas, MS is an Associate Professor and the Director of the Scholarly Pursuit and Thesis student research projects at the TCU and UNTHSC School of Medicine (Texas). His expertise is in imaging techniques of the lymphatic system, animal models of lymphedema and treatment, lymphatic and blood vascular growth factors, genetics of lymphedema, and diagnosis/evaluation of patients in the clinic.

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not gained wide use since it can be difficult for some patients to place their arm or legs into the device and cleaning the device does take some time. The third modality for volume measurement is the use of an optoelectronic limb volumeter (also called infrared perometry), which uses an array of lights and sensors to measure the limb.

These devices are expensive and not utilized by many treatment clinics worldwide.

The systematic review also found both of these techniques also have high interclass correlation coefficients2. Although not the standard utilized in all clinics, Armer et al. in a large study has recommended that a volume increase ≥10% be utilized for documenting lymphedema3 (See Editors Note page 4).

Can we measure tissue fluid increase before volume increase?

While documenting the swelling is very important for diagnosis, many patients, physicians, and therapists would like to get the earliest possible indication of potential Ly m p h e d e m a p a t h w a y s . c a 5

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Editor’s Note:

Challenging the definition Lymphedema has very often been defined as >10% limb volume increase in comparing affected (or lymphedematous) and unaffected limbs or in comparing pre-surgery limb volume to subsequent limb volume using water displacement, sequential circumference limb tape measurement, or infrared perometer.

Yet, more and more clinicians and researchers have noticed that even minimal 5% limb volume increase can lead to significantly poor quality of life and more lymphedema symptoms.

Importantly, lymphedema symptoms may indicate an early stage of lymphedema in which limb volume changes cannot be verified by currently used criteria of >10% limb volume increase. Timely intervention in early disease stage can prevent lymphedema from progressing into a chronic condition that no surgical or medical interventions at present can cure.

It is time to challenge the definition of lymphedema as >10% limb volume increase by taking into consideration of minimal limb volume increase and lymphedema symptoms.

Check lymphedemapathways.com for full explanation and references.

development of swelling. This means detecting early fluid buildup in a limb before actual swelling takes place (sometimes referred to as pre-clinical edema).

There are two main approaches for measuring tissue fluid. One measures discrete locations for tissue water content (tissue dielectric constant)4 and the other utilizes very low (undetectable) currents through the body to determine calculated values of extracellular fluid (bioimpedance spectroscopy or BIS)5. Although these techniques are being researched and their validity touted, many payers as you might expect are not convinced that lymphedema exists until there is documented swelling. This has not stopped clinics from utilizing these techniques 6 Ly m p h e d e m a p a t h w a y s . c a

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for early detection of potential future swelling.

Some studies have examined the correlation between BIS and limb volume ratio and showed significant correlation6 while others have used the BIS values to assess breast cancer patients before surgery and then follow up to 12 months post surgery to gauge the clinical benefit5.

Will these changes be useful for evaluation or early detection?

The above study by Ridner et al.6 suggests the possible clinical benefit of using BIS as a tool for screening and following at risk patients for the development of lymphedema where this technique might be the most useful. Recent advances in the technology have produced devices that patients simply stand on with hands and feet touching electrodes to quickly and efficiently obtain data. As the time needed to administer is minimal, perhaps devices such as these will become more frequent in physician’s offices to assess patients, providing that reimbursement issues can be resolved.

Advances in imaging The current gold standard for imaging is lymphoscintigraphy (LAS). In this nuclear medicine test, one small injection is performed in the hand and/ or foot and a tracer enters the lymphatic system. The tracer is subsequently transported through larger and larger lymphatic vessels including deep vessels to the neck where the thoracic duct (the largest lymphatic vessel in the body) enters

the bloodstream. This test is accepted medical practice and can be done anywhere where a nuclear medicine facility exists.

The image can document areas where the lymphatic system is not flowing (primarily due to obstruction in patients following cancer treatment) or in more complicated cases where lymph may leak into the abdomen or chest cavities7. LAS imaging documents changes in the lymphatic system that underlie the development of swelling.

A more recent imaging technique utilizes ICG fluorescent dye to depict the superficial lymphatic system as a reflection of underlying blockage. Although the use of this technique is currently restricted for imaging lymphedema patients as part of research studies, it is currently utilized by surgeons performing lymphaticovenous anastomoses (LVA) and lymph node transfers.

It does not have the ability to demonstrate the deep lymphatic system and its use is more reserved for superficial lymphatic imaging. Researchers Low Frequency are exploring new Current passes around cells detection systems as well as new dyes to improve this technique.

Ultrasound is utilized by some clinics and researchers to High Frequency Current passes through cells examine both the skin and subcutaneous tissues in patients with lymphedema. Although differences can be seen, specific values (and techniques) to define lymphedema have not yet been defined and work is continuing to strengthen these efforts.

The greatest use for ultrasound is for examining

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the lymphatic system. Unfortunately, imaging costs are not trivial and these techniques may not be accessible to those patients who need them the most.

The future looks bright for the use of non-contrasted MRI studies for imaging of the lymphatic system. the venous system in patients who may also have venous disease with lymphedema or for patients who have venous disease without lymphedema.

The biggest recent advancement in imaging is the utilization of magnetic resonance imaging (MRI) to demonstrate abnormalities in the lymphatic system. MRI does not utilize radioactivity as in LAS and offers much more detailed imaging. Some studies used a contrast agent and have shown better imaging of lymphatic vessels8. However, more techniques are being reported without the use of any contrast agent to image both the peripheral9 and deep lymphatic system10. The study by Crescenzi et al.9 also demonstrated a change

in the imaging of arm lymphatics following massage (MLD) treatment. The study in very complicated patients by Dori et al.10 focused on the very deepest lymphatic vessels in the trunk that they could clearly see to guide treatment with interventional radiology to stop vessels leaking into the abdomen and chest. The future looks bright for the use of non-contrasted MRI studies for imaging of

Summary In conclusion, this is an exciting time for innovation in diagnostics. We will still rely on our tried and true volume determinations using tape measurements, but newer techniques and tools will continue to be evaluated and spread to more sites as research confirms their validity and utility. There are good and documented advances in early detection of fluid changes (BIS) which eventually should be adopted by more physicians and clinics.

Imaging techniques (e.g. MRI) are continuing to be improved and utilized at more facilities and are ready for more widespread use.

Future research is still needed and more publications and education will follow. LP A full set of references can be found at www.lymphedemapathways.ca

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canadalymph.ca Spring 2019

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Exercise Study

Aquatic exercise training and lymphedema

The creation and studied benefits of an aquatic gym How training in water benefits the body

By Andrée Dionne

1 Introduction Exercise has been recognised as an essential element in the management of lymphedema1. However, restricted joint activity, reduced mobility, comorbidities and musculoskeletal pathologies are complications of lymphedema that limit participation in physical activity. In fact, the physical ability and psychological readiness to exercise may be impaired by being physically deconditioned, having comorbidities or musculoskeletal pathologies. Furthermore, recent research has shown that water exercise is safe for cardiac patients and does not affect the respiratory system2,3.

To explore the physical characteristics of water and overcome the physical and medical limitations encountered on dry land an immersed training center called Gym liquide was created at UQAM. At this facility there are bikes, treadmills, steps, trampolines, floating boards, aquapoles, training cage, boxing bags and fit-lights for neuro muscular training. People of all ages and fitness levels train together. It’s a personal valorization for people to discover their ability to move and coexist in the pool and use the same equipment as everybody else: a fitness enthusiast searching for a fresh new challenge, a pro athlete looking for a competitive edge or a person struggling with simple daily movement. Since training in water offers the experience

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3 of less gravity, a better coordination, a multidirectional resistance, less fatigue, less pain and natural compression, it seemed like the perfect environment for participants with lymphedema.

Aquatic exercise intervention Participants exercised for 45 minutes, twice a week for six weeks. The warmup included yoga breathing, arm exercises and aqua-jogging in deep water. Afterwards, a circuit training session of moderate

Andrée Dionne, Ph.D. in kinesiology, certified lymphedema therapist (CLT) and certified aqua lymphatic therapy (ALT). For more than 20 years, Andrée has specialized in making exercise accessible to people with different pathologies and chronic disease. She is the founder and director of Gym liquid at the University of Quebec in Montreal.

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5 1 Gym Liquide Group Rehabilitation 2 Aqua-training 3 Lympho-yoga breathing 4 Lympho step 5 Lympho-aqua-spinning Ly m p h e d e m a p a t h w a y s . c a 9

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Muscular exercises were performed on an aquastep and a trampoline to stimulate muscle pumps of feet and ankles. to vigorous intensity interval training consisted of aqua-spinning, walking, arm and leg exercises immersed in chest deep water level. Muscular exercises were performed on an aquastep and a trampoline to stimulate muscle pumps of feet and ankles.

This type of exercise plays a fundamental role in the management of edema of the lower limbs by stimulating reabsorption of fluid and venous hemodynamics4. For the cool down, participants returned to neck deep water level for aqua-jogging, arm exercises and yoga breathing. The water temperature was intentionally at 29oC, which is typically found in public pools, so that participants can pursue

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training in their backyard pool, in a public pool, in a lake or at the hotel while they are vacationing. Kinesiologists, who are Klose certified CLT therapists, adapted the difficulty, the intensity and the progression of exercises according to the ability to exercise, the fitness and medical condition of each participant.

Outcome measures were Quality of Life for Limb Lymphoedema Questionnaire (LYMQOL), handgrip strength test, bioelectrical impedance spectroscopy (BIS), circumference measures of the affected limb5 and the 6-minute walk test (6MWT)6.

This innovative aquatic exercise training program allows moderate and vigorous intensity activities for patients with lower leg lymphedema, as recommended by major cancer organizations and the ACSM (American College of Sports Medicine).

Water immersion approaches such as, the aquatic lymphatic therapy, known as the Tidhar method, is mostly recognized as being low intensity, based on Casley-Smith remedial exercises7.

The ACSM recommended exercise prescription is: • 150 min. per week of moderate intensity or 75 min. per week of vigorous intensity aerobic exercise or an equivalent combination; • 2 to 3 weekly sessions of musclestrengthening and flexibility exercises for major muscle groups.

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The exercise prescription must be adapted according to health status, treatments received, and anticipated disease trajectory of each participant. Walking on dry land may not be physiologically strenuous enough to constitute moderate or vigorous intensity aerobic exercise and the fear of falling can also be a preoccupation when trying to walk faster. Walking or jogging in the water allows an increase in exercise intensity with minimal joint impact and risk of falling.

A 70 kg person weighs only 7 kg when immersed at neck deep water level.

Eleven participants were recruited to participate and four declined to pursue the study for personal reasons. With only 90 minutes per week of aquatic training, the participants in the current study, were able to significantly decrease limb circumferential volume (p=0.03) and global extracellular fluid (p=0.04) and to significantly increase their functional capacity as shown by the improvement in handgrip strength (p=0.003) and the 13% increase in the distance covered

in the 6MWT (p=0.04). Handgrip strength has been recognised as a valid measurement of mobility and quality of life in patients and of physical activity in healthy subjects8.

A trend towards an increase in the overall quality of life score and the significantly improved emotions score (p=0.03) with the LYMQOL were observed after only 6 weeks of training suggesting that aquatic exercise may help manage the disease burden as an added tool to improve physiological, physical and psychological factors that affect survival and quality of life of cancer patients9. In absence of treatment, lymphedema may progress and exercise may play an important role in preventing progression1. The high adherence (100%) and compliance rate (88 ± 9%) in this program is of importance to form an effective long-term treatment strategy for lymphedema. Immersion exercise does not appear to exacerbate LLL and a randomized clinical trial with larger numbers is essential to consolidate the results of this study. LP

This innovative aquatic exercise training program allows moderate and vigorous intensity activities for patients with lower leg lymphedema, as recommended by major cancer organizations and the American College of Sports Medicine.

This article is a synopsis of a pilot study carried out at the University of Québec in Montréal (UQAM) and published in The Journal of Alternative and Complementary Medicine (JACM) titled “Aquatic exercise training outcomes on functional capacity, quality of life and lower limb lymphedema”. To view the full article and all of the results: J Altern Complement Med. 2018 Sep/ Oct;24(9-10):1007-1009. doi: 10.1089/ acm.2018.0041. https://www.ncbi. nlm.nih.gov/pubmed/30247973 A full set of references can be found at www.lymphedemapathways.ca

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Researcher Profile

Profile of a Researcher: Christine Moffatt

Collaboration and communication together as a community Christine Moffatt is a nurse by background and an international nursing professor in the UK. She is also a clinician and spends her time mainly running a research centre in the UK but also in Denmark and France.

She is currently the Chair of the International Lymphoedema Framework.

Q A

What prompted your interest in lymphedema research?

My passion for this type of research grew out of my clinical practice at St. George’s Hospital in London with Peter Mortimer where I headed up an integrated leg ulcer service. In the late 1990s we faced so many challenges in the UK from lack of services so I switched my research area to include lymphedema and in fact developed with this team the term “chronic oedema” in our first epidemiology study. Patients are my passion and quite frankly the reason why I get up each day. Care must improve, and I want to be useful in achieving this in some small way. The first study I undertook in London has been a pivotal one as people have realised so many different types of patients are affected.

Q

What do you see as priorities for lymphedema research internationally?

A

The priorities are of course many and are driven in part by the clinical and academic background we all come from.

I am immersed in a background of using mixed methods research and can happily enjoy many different research approaches.

I am sure though that the main priority is to show the size and impact of the problem which the ILF has started to do through the LIMPRINT study. We need better evidence 12 L y m p h e d e m a p a t h w a y s . c a

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about what treatments work and a way to demonstrate this through outcome measures.

We also must always stay focused on the needs of patients who live with this condition and face many challenges. Therefore, research must also address this. I want to challenge many of the dogmas and myths that underpin lymphedema care and this can only be done through rigorous research. There will, however, be many areas that cannot be easily researched and we need to stay open to the importance of collaboration and communication together as a community. One of the most amazing experiences for me has been leading

which together we can achieve so much more than working alone.

Q A

How has the focus of your research shifted over time?

My research approach has definitely moved from more classical public health and medical research to psychosocial research. One of the most precious research studies I undertook recently was during the international lymphoedema childrens’ camp in Turin (ILF). This research used research methods that I had not used before, including picture art with young children and photography as well as talking with

One of the most amazing experiences for me has been leading studies involving many countries and sites and the passion in which people come together. studies involving many countries and sites and the passion in which people come together to look at a problem and try to solve it, often with very little money.

Q A

What impact do you hope your research will have?

My dream would be that care is paid for adequately in each country and that all patients have access to the correct treatment they require at the point of need. I long to see a change in the way we view the condition which often focuses on the need for intensive treatment rather than empowering and helping patients to stay stable and well.

Q A

What motivates you as a researcher?

Patients motivate me completely and they also teach me about what is important. My colleagues and students also play a massive role and the way in

parents in three different languages. What was so powerful about this research was the way the parents shared with us their stories and how the research itself was beneficial for them providing an opportunity to talk in ways they had not before.

Q

What are the implications of your research for people living with lymphedema?

A

I hope that my research will enable health agencies to stop hiding under the belief that lymphedema is a rare problem and that there is an ethical imperative to improve practice. We are already seeing changes in reimbursement of treatment, but we have a long struggle ahead I am sure. I hope my research will lead to a better evidence base for all aspects of treatment and lead to innovations in practice. Most of all I hope to inspire young researchers to move into this area. They are the leaders of the future.

LP

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Research Perspective

Unusual relations or a delicate balance?

Microbes, gut, obesity, inflammation, brain function And the impact of good and not so good lymphatic drainage

By Neil Piller Introduction The gut is a tube. Its contents and its innermost layer (the mucosa) are the external environment.

The gut and its wall is like the skin—a barrier between our internal and the external environment.

Most often all is well and the barrier is structurally sound and functions as it should, however, sometimes things can go wrong and these aberrations can become chronic. The skin as a barrier its part of our general and nonspecific defence system. It’s seven layers protect what lies beneath (the muscles, bones, organs and their supply structures).

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s we know the skin is not an impermeable barrier. Many things need to cross it to ensure our optimal health: for instance, evaporative fluid loss and core temperature regulation through vasodilation and constriction. At the same time, however, large changes such as when we have a serious wound involving the epidermis, the dermis and other layers can lead to uncontrolled blood loss, which allows the entry of uninvited bacteria leading to subsequent infection. Diseases and disorders of the skin like psoriasis, acne, eczema, shingles, rosacea, hives, cold sores, etc. also lead to chronic long term changes to the skin and affect our body’s

ability to defend its self against bacteria virus, parasites etc.

The gut is similar to the skin in this way!

Its layers (like those of the skin) can be damaged or dysfunctional and for the body this can be just as serious for the health of the person affected.

This dysfunction can (also like the skin) be local, general, acute and chronic.

This article may help make us think about the importance of the gut as a barrier and what can go wrong, along with what we may be able to do to bring it back to normal function range.

Although it’s not all based on strong RCT type of evidence and it is not always based on human studies, this article combines what

Professor Neil B Piller, is Vice-Chair of the International Lymphoedema Framework, an editorial board member of Journal of Lymphoedema, Lymphatic Research/Biology and Lymphology. He is director of the Lymphoedema Clinical Research Unit at Flinders and Patron of the South Australian Lymphoedema Support Group.

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we know of the gut, the microbiome, the lymphatic system and its role and brain function—and what a lymphedema practitioner might do to remediate some of these changes or prevent them from worsening.

References are included where appropriate, as many of the statements made in this piece can be considered common knowledge. If you are reading this as an immersive expert in one of the fields covered here, you may see errors, deviations from the norm and omissions.

The intent of this article is to get us to think openly and holistically so we can move to enhance and enrich our knowledge and make a difference to patient outcomes, hopefully through the necessary clinical trials, keeping in mind that this is not the only information source that can help us achieve this. (Piller, 2018).

Context The gut has many functions. Closely integrated to these are the lymph vessels and nodes. Their roles, nature and specific L y m p h e d e m a p a t h w a y s . c a 13

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details regarding intestinal environment maintenance and the impact intestinal health and disease has on them are unclear and understudied. We know lymph vessels and nodes function as conduits for lymph and immune cells and there is some significant adaptation to gut nutrient and barrier functions. We know that the lymphatics are essential for absorption and transport of nutrients, hormones, many medications, and other extracellular components from the digestive tract to the blood. Often this transport also includes bacteria and viruses.

We also know that lymph contains chylomicrons and hormones produced by the range of entero-endocrine cells and we believe that the nerves of the lacteals are a part of a neuro-lymphocrine system, which is likely stimulated by the contents of interstitial fluid.

We know so much! Or do we?

We are aware that during infection, an increased lymph flow limits edema, up

to when it reaches maximum transport capacity. Lymph stasis will lead to chronic inflammation, so, maintaining its optimal and maximal function, load and drainage wise, is critical. That being said, things are not always this simple. In some instances, a lymphatic system functioning maximally might not be the most ideal in terms of cell and tissue health and the immune system.

You will see this explained further in the coming sections.

Infections are known to result in damage to the peripheral/central nervous system through the replication of bacteria within the nervous tissues and sometimes through an uncontrolled immune response. The latter could be a significant issue.

The two body systems critical for whole body homeostasis (lymphatics and microbiota) are often ignored, as noted

by Stanley Rockson in his recent editorial (Lymphatic Research Biology Rockson, 2017).

Similarly ignored is the importance of the interaction between the two.

We are all cognizant of the issue of obesity, but we ignore or are unaware of its relationship with metabolic syndrome/ poor metabolic health and how these may link with changes in gut permeability, or “leakiness,” and the microbiome.

What’s going on in the gut is “messaged” to the rest of the body most often by the lymphatic vessels. While we know a lot about the regional lymph nodes and their role in the immune response, we know little of the lymph vessels linking them and what changes to their status indicate. Some diseases/ disorders, such as chylo-thorax, filariasis, metastatic spread and nodal swelling in infection, for example, do (sometimes!) remind us of the lymph vessels, but we are in desperate need of more research here.

The lymphatic system in immunopathology When the body experiences an acute infection, we have seen that there is an increase in lymph flow. This is of great

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benefit since it limits edema, while providing an opportunity for soluble microbial antigens and dendritic cells to present at the regional nodes.

But what if there is lymphatic failure (lymph stasis) due to some damage/ malformation/disease to it? Well, it can mean a persistence of immune cells/ mediators in tissues which leads to chronic inflammation and tissue damage. We are aware this may contribute to Crohn’s and ulcerative colitis, but there is another side.

The confinement of pathogens limits their spread, so perhaps we can look at this from a positive angle. Again, it’s useful to consider where the best balance point is, and how that “decision” and situation came to be established.

Microbes and the gut Microbes and the gut are very important in our health and homeostasis. We often hear about “good” and “bad” bacteria, but is there really such a thing? We say a

bacteria which helps aging, reduces obesity and can suppress other bacteria and their infections and that may reduce issues related to brain disease is a “good” bacteria, while doing very little to classify what

makes “bad” bacteria, bad! Take for instance Clostridia P and Helicobacter P (associated with poisoning and gastritis, gastric cancer), their levels are actually less in patients with Multiple Sclerosis!

So could this mean that “bad” can become “good” and vice-versa.

Comparing anti-microbial immune responses with immunopathology There’s a battle between cellular immunity Pro inflammatory Th1 helper cells and the humoral immunity anti-inflammatoryTh2/ regulatory T cells. Going back to the Clostridia P and Helicobacter P issue, if H pylori is not eradicated the immune response is skewed to an anti-inflammatory one, meaning protection of the immunopathology will be at the expense of bacterial persistence! Make sense? – well sometimes new perspectives can be hard to digest and in order to gain that understanding we need to look at the big picture!

Next, on to the inflammatory environment.

These environments induce changes in gene expression in the lymphatic endothelial cells (LEC’s). This change leads to an expansion (lymphangiogenesis) of the lymphatic network in the inflamed tissue and in the draining regional nodes. Interestingly, when one experimentally blocks (or enhances lymphangiogenesis) these out-

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comes will modulate the course of the inflammatory and immune responses— so lymphangiogenesis and its regulation is at the core of what happens when there is an immune challenge.

Is it possible that this gene expression on LEC is a new therapeutic target? Just think for a moment about when we are undertaking MLD to improve lymph flow; what is it that we’re doing to this modulation, and are we thinking enough about it’s potential outcomes?

The Microbiome and the brain Gut microbes in their many varied forms can be linked to mood, emotion, appetite, fullness, learning, memory, so these microbes appear to help maintain brain function. But there are negatives to this; they may also influence risk of anxiety, depression and the like.

Amazingly, there are some similarities/ parallels in some aspects of the functioning of the immune and nervous systems. For instance, immune cells and neurons can produce and sense many of the same chemicals, but some microbes produce molecules, which can impact our behaviour without affecting the immune system!

Then there is also the reverse. For instance, stress may change lactobacillus (lactic acid producing) bacteria activity and numbers, which may then affect brain chemistry in mothers and babies.

How do gut microbes communicate with the brain? It seems they may do this in one of three ways.

1 Directly via the vagal nerve

(which is the key gut-brain connector nerve), 2 Through circulating immune

cells, which are “trained” in the gut and then travel to the brain via the lymphatics or venous systems. (So much for the Blood Brain Barrier), 3 By metabolites/chemicals

produced by them that enter the blood and circulate to the brain where they may influence behaviour.

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Communication systems, as we all know in our wider lives, can sometimes go wrong and the gut-brain pathway is no exception.

As an example, there may be a link between Neuro degeneration and the microbiome.

Alzheimer’s, Parkinson’s and ALS may have a GI component linked to them. For instance, in some patients with these conditions there seems to have been some gut disturbances many years before motor system issues appeared. While this is an interesting finding and presents an opportunity for further research, it’s important to remember that many of these statements are based on association rather than causation.

This presents a few worthwhile questions: Does a healthy microbiome mean a healthy body and a healthy brain, and if there is “poor health” in any of these areas how might MLD and other strategies be able to help?

There are some reasonable steps to improve this “health” if its poor and that could start with increasing gut microbe diversity. Generally, our microbe diversity is decreasing as we live in cleaner environments, and consume more prepared, heated or microwaved foods.

Further, fruits and vegetables, resistant starches found in seeds and nuts as well as perhaps anti-inflammatory Omega 3 based foods may all help bacterial diversity.

Will this mean a healthier gut population, less inappropriate signalling to the brain via the mechanisms mentioned above and will this be likely to have an impact on the initiation or severity of some of these neurodegenerative diseases?

For all of the lymphedema therapists reading this who know how to improve lymphatic system functioning, if we improve/modulate lymph flow from the brain will we be able to have a positive impact on brain health?

Perhaps an example of this is that Parkinson’s is linked to a mis-folding of a protein in nerve fibres—and it just may all start in the gut.

The reason is the bacterial population, but here is the interesting point- it appears that it may be linked to a virus that kills “good” gut bacteria. (yes: I said earlier that there is really no “good” or “bad” bacteria but it all depends on numbers (concentrations) and their location). This could suggest that the event of a viral attack may result in a chain reaction originating

Gut microbes in their many varied forms can be linked to mood, emotion, appetite, fullness, learning, memory, so these microbes appear to help maintain brain function.

in the digestive system and resulting in nerve damage in the brain. Those with Parkinson’s have only about 10% of the levels of Lacto-coccus compared to those without it and they had twice the levels of a virus (bacteriophage), which invades and destroys these bacteria!

Conclusion Keep an eye out for more information about the very exciting developments on some of these fantastic and hitherto unknown inter-relationships between the gut and the brain. It’s over to all of you now, as readers, therapists, doctors and researchers, to complete the picture. If there are changes in brain structure (and function) and if they are linked to the microbiome, what might this do to the brain via the lymphatic system (sending molecular messages, inflammatory agents etc.). If as a lymphedema therapist you can improve brain lymphatic drainage (now that we know the brain has a lymphatic system!) reducing the concentration and improving the milieu of the cells, the integrity of their connectors and the astrocytes; perhaps if this can prevent or have an impact on a range of brain degenerative diseases then we are looking at broadening of the benefits of improving health, not only by impacting on the lymphatics but also by considering and manipulating the gut and its micro-biome! LP Concurrently published in the Australian Lymphology Association’s “Lymph Exchange” Vol.19/Issue 3. A full and detailed version will also be available in the June 2019 issue of the Journal of Lymphoedema. vol 14 (1).

A full set of references can be found at www.lymphedemapathways.ca Spring 2019

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Therapist Perspectives

Self-care: A therapist’s thoughts Involvement of the clinician in a patient’s routine and other useful tips

By Bonnie Lasinski

C

omplete decongestive therapy (CDT) is the standard of care (“gold standard”) for the treatment of individuals who develop lymphedema (LE). The key components of CDT treatment include compression using low-stretch compression bandaging in the initial intensive phase of treatment. This is followed by compression garments for day and nighttime compression bandaging or inelastic compression garments for nighttime compression in the maintenance phase of self-management. Manual lymph drainage (MLD) is performed by a lymphedema specialist in the intensive phase of treatment. Individuals learn simple self-MLD to be done daily in the maintenance phase. This can often be incorporated into their exercise program to make it doable—my mantra is “less is more”. The most effective exercise and self-care program is the one that the individual can fit into their day/ lifestyle for optimal adherence and outcomes. Skin care and education in self-management are key components of a successful lymphedema management program. The success of CDT rests on the individual’s ability to follow through with self-management.1 A few years ago, clinicians used to refer to “Do’s and Don’ts” to “prevent lymphedema.”

There is currently no evidence that doing or not doing certain things prevent the development/ worsening of lymphedema in persons at risk/living with LE. Clinical experience tells us that there are common-sense strategies that may reduce the risk of triggering or

exacerbating a pre-existing lymphedema.2 There are many different causes for LE and each person’s anatomy and physiology varies. Risk reduction strategies should be individualized based on an individual’s LE diagnosis, their physical condition, co-morbid medical conditions, psychosocial, economic, and environmental factors.

Skin Care

Exercises

Complete Decongestive Therapy (CDT) Compression Bandage

Manual Lymph Drainage

There are some common-sense general guidelines that clinicians can suggest to their patients when they are faced with situations that place them at increased risk. Knowledge is power and it is better to make an informed decision regarding risk than to arbitrarily avoid something that may be helpful or necessary in a given situation. There has been some controversy in recent literature suggesting that

since risk-reduction strategies don’t have high level evidence to support them (no double-blind randomized controlled trials have been done) that they should not be recommended to patients since they can be upsetting and onerous to patients, impair3 ing their quality of life.Complete It is my clinical Decongestive judgment that patients need to be informed about the possibility of risk in their particular Therapy case and to use that knowledge (CDT)to make informed decisions about what they are and are not willing to do to manage their condition.

Rather than reading an arbitrary “list” of warnings, a discussion between the individual at risk or living with LE and their lymphedema specialist can identify their level of risk and discuss activity modification that works for them.4

Skin care For an individual with intact skin, skin care may be as easy as using a low or pH neutral moisturizing lotion or cream and inspecting skin daily for any cuts or abrasions and treating them by gently washing, drying, and applying topical antibiotic ointment or cream. This is not as easy for an individual with impaired skin integrity (thin skin prone to tears/breakdown, skin with chronic lesions from psoriasis, eczema, or dermatitis). Using a donning device can reduce the friction of donning a compression garment over delicate skin. If an individual has open areas that need protection with a bandage, applying a thin under layer over

Bonnie Lasinski, MA, PT, CI-CS, CLT-LANA, is Clinical Director of the Boris/Lasinski School, teaching the Casley-Smith Method of CLT, and former Clinical Director of Lymphedema Therapy in Woodbury, Long Island, NY (retired 2016). She has extensively presented about managing lymphatic system disorders. Bonnie is an active member of the International Society of Lymphology; Lymphology Association of North America; Casley-Smith International; International Lymphoedema Framework; and American Lymphedema Framework Project.

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the bandage before donning the garment prevents the bandage from slipping. For example, an individual with a small open area above their ankle can cover that area with a bandage, apply a nylon knee-high stocking with the elastic top cut off, and then don their compression stocking. The nylon prevents the bandage from moving and allows the individual to wear their compression stocking instead of having to bandage their limb or wear a more bulky Velcro device during the day. Do NOT try this without discussing it with your lymphedema specialist first.

Ointments containing petroleum will deteriorate compression garments, so be careful when using them and be sure the ointment doesn’t come in contact with your garments.

Some of the more effective moisturizers have a high mineral oil content and that can deteriorate some compression garments as well. Showering at night and applying these types of moisturizers/ointments under inelastic night compression garments is a good option.

Garment care Getting compression garments to dry quickly is a challenge. Garments that have cotton in them tend to shrink when exposed to heat. These can be placed in a dryer that has a COLD air-fluff cycle with a clean, dry, towel of a similar color for about 30 minutes. The dry towel will absorb some of the water from the stocking and it will air-dry more quickly after that.

Exercise Exercise enhances lymph flow, maintains or improves joint range of motion, improves strength and stamina, and can help with maintaining optimal body weight.5 Many people feel they can’t exercise because they have mobility or balance issues. Exercises can be modified so that they can be done standing supported by a countertop or sturdy piece of furniture. Aerobic exercise is possible sitting in a chair! Try marching in place and performing hip flexion and knee extension exercises sitting in a chair—you can raise your heart rate and

sweat! Again, don’t try this without discussing with your lymphedema specialist first.

We know that deep breathing enhances lymph flow.6 Good posture facilitates chest expansion. Exercises that extend both arms to the side and up to shoulder level (if one can’t raise arms overhead) facilitate chest expansion that allows for deeper breathing. Exercise specifics, number of repetitions, and rest intervals should be individualized to each person and their at-risk/affected limbs monitored for signs of swelling/increased swelling.

Compression Compression garments are essential during the day to maintain edema reduction.

They provide a firm surface for the muscles in the involved limb/area to contract against to enhance lymph and venous flow. Style and components of compression garments can be modified to allow an individual to be more comfortable exercising or participating in sport and leisure activities. For example, a

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young child can have extra padding and length in shin guards to be able to participate in soccer or ice hockey. One of my young patients with primary lymphedema in both legs played ice hockey with a minimum of problems and an overwhelming amount of joy! In fact, the swelling in his toes, feet, and ankles was at its lowest when he took off his skates! More importantly, he maintained a healthy body weight and had fun with his friends, while learning to be a valued member of a team.

Another patient wanted to try knee high compressions stockings rather than thigh highs when she participated in sports. She was not comfortable playing in thigh highs or pantyhose.

She learned how to measure her legs to monitor for any increase in swelling when she wore the knee-highs. She always bandaged her legs to the groin at night on the days she played to ensure that any swelling that may have developed in her thighs during the day reduced over night.

She had no significant increase in swelling overall and was proud that she was able to manage her condition. It gave her and her parents the confidence that she would be able to manage her lymphedema when she went away to college. Both these young people shared their lymphedema diagnosis and how they managed it with their friends and coaches. By doing so, they advocated not only for themselves, but raised awareness about lymphedema for those who would follow them.

Lymphedema is a life-long condition and individuals need to know how to cope with LE-related changes in their lifestyle and how to optimize their self-care management. LP

Letters to the Editor... s— hristma Merr y C & , ) very a n m n ou, A . I was (a ma Thank y e s arrived d a e h h r p a d m n World Ly the cale to see “ ed in iz d n e g g o ra c u re enco arch” ow n LD)—6 M e countd Day (#W tings. Th s n of li io y it a d d ial fourth e the spec y to the edema a h p rw e m d y n L e“ is well u e Day, in th has gon y, OUR t vs. LE h g THE Da fi e h renessa ...t ” w y a it e n u d th Comm ll beyon hedema b a l & we e. Lymp i. fully glo , re o y f o y a d only LE appy ss Day. s, plus H Awarene t regard s e b & alth Good he r, 2019!

New Yea Kelland (Steve) Stephen o Ontari Ottawa,

Today I receiv ed my and 20 Pathwa 19 cale ys mag ndar. T well do azine he cale ne, an ndar is d I esp whole really e cially lo landsc ve that ape of been c lymphe the overed dema (i.e. no related has t just b , but a reast c lso oth leg, he ancer er can ad and cer rela neck) a lymphe te d n d tons dema circum of prim childre stance ar y n alike s, adu ...v mothe lt and r and s er y well done o . ns I love th definite e ly relate tor y at the e nd, I c to that! work o an n this.

T hanks It for the is so im away fr om the por tan t to bre notion arm ly ak that ca mphed ncer re ema is people lated the on suffer ly thing from.

Debbie Ciotti-B o wman Hamilto n, Onta rio

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Case Study

Hybrid approach to treating severe lower-extremity lymphedema Combined decongestive therapy, self-care and surgery provides successful outcome

By Yuko Takanishi, Yoshihiro Ogawa, Yuichi Hamada and Robert Harris

T

he successful management of lymphedema using various strategies has been reviewed in the literature (Shaitelman et al, 2015).

The use of combined decongestive therapy (CDT), a combination of manual lymph drainage, compression therapy, exercises and skin care has been well documented and is accepted internationally as the gold standard for successful lymphedema management (Liao et al, 2012; International Society of Lymphology, 2016). Despite its acceptance, there have been many debates about individual components of CDT and their usefulness (Ezzo et al, 2015). Self-management has been utilised as an alternative and adjunct to therapist-applied CDT (Tidhar et al, 2014).

More recently, surgical approaches to the treatment of lymphedema have gained popularity, with many options now being available. The long-term efficacy of these options, however, remains unclear (Neligan et al, 2016).

compression garments. The patient tried self-bandaging with multi-layer compression bandages, however the edema increased over this time period with severe deformation of the limb. She found taking care of herself increasingly difficult.

Medical history – A 62-year-old retired, single female patient residing in Japan presented with left lower extremity lymphedema. At the age of 46, the patient had undergone surgery for ovarian cancer (a total hysterectomy, bilateral salpingooophorectomy, pelvic lymphadenectomy) followed by postoperative chemotherapy.

At age 47 she experienced left lower leg edema with continued tissue swelling.

At the age of 52, the patient received CDT therapy at another hospital. Over the course of 1 year, she received therapy two to three times per week that consisted of manual lymph drainage and elastic

Treatment – The patient started receiving treatment at the Limbs Tokushima Clinic when she was 57. She underwent an intensive reduction-phase of CDT over 1 month (1 hour per day, 6 days per week).

The CDT treatment comprised of: • Daily moisturising skin care • Dr Vodder’s manual lymph drainage treatment protocol for a patient with secondary leg lymphedema, according to Wittlinger et al (2010) • Compression therapy using short-stretch multi-layer lymphedema bandaging consisting of Rosidal® K Short Stretch Bandage, Mollelast® conforming bandage,

TABLE 1.

Reduction-phase combined decongestive therapy, including multi-layer lymphoedema bandaging

Rosidal® Soft compression bandage, Idealbinde wide stretch compression bandage and Komprex®II foam padding • Exercise therapy using a treadmill and joint motion machine for 1 hour a day.

The edema improved during the initial intensive reduction-phase CDT (see Table 1).

The patient was fitted for a class 2, flat-knit compression garment and was taught home care exercises and skin-care practices.

The left inner, upper thigh showed a good response to CDT immediately after treatment but this improvement proved difficult to maintain at home. Despite use of the compression garment, the patient’s swelling increased too much to allow its continued use. Reduction-phase therapy was, therefore, continued at 6-month intervals.

At age 60, the multi-layer lymphedema bandaging protocol was adapted slightly.

Yuko Takanishi is a Registered Nurse and Yoshihiro Ogawa is Cardiovascular Surgeon, Director at Limbs Tokushima Clinic, Japan.

Yuichi Hamada is Chief of Plastic Surgery in the Department of Plastic Surgery, Japanese Red Cross Fukuoka Hospital, Japan.

Robert Harris is Director of the Dr Vodder School – International, Canada.

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Instead of 10 short-stretch bandages, three medium- and six short-stretch Biflex® bandages were used. Mobiderm® Autofit, which is an uneven chip-foam bandage, was used under the bandages. Mobiderm applies uneven pressure to the tissues and is reported to help improve the softening of fibrosis and fluid mobilisation. The change in bandaging technique provided enhanced reduction of the edema and softening of the tissues. The patient found the self-application of these materials easier than the shortstretch bandages alone. Despite this, the sac-like edema on the left inner, upper thigh continued to reform after treatment (Table 2).

Surgery – The sac-like, sagging-skin on the inner, upper left medial thigh was difficult to resolve (making the use of compression challenging) and required surgical removal.

Preoperative examination with fluorescence lymphography showed the presence of considerable dermal backflow in this area and that the lymphatic vessels had been obliterated in the shallow layers of the skin but had expanded in the deeper layers.

Lymphaticovenous anastomosis (LVA) surgery was performed at five points in the lower left leg. During LVA surgery, surgeons often notice systematic changes in the connective tissue surrounding the subcutaneous lymphatic vessels and skin layer (Miura and Hamada, 2017). During surgery, large dilated lymphatic vessels were observed in this region, indicating that they are a high-flow type. These vessels were observed in subcutaneous tissues other than the shallow layers. The state of the fibrosis varied depending on location.

TABLE 3. Post plastic surgery to remove the skin flap (14 February 2017)

A significant further reduction was obtained using LVA surgery, (see Table 3), six months after the surgery. The goal of the surgery was to reduce the skin flaps to enable easier donning of the garment and self-care, rather than volume reduction.

Discussion – The initial phase of CDT led to a significant improvement in limb reduction.

Although limb volume measurements were not calculated, limb circumference was reduced at all measuring points except the ankle. On the thigh (F), the limb was 20 cm smaller at one marking point after 4 weeks of intensive CDT. Comparison of the results in Tables 1 and 2 show that 4 years after the initial treatment phase there was some return in edematous volume in the affected limb. The second

TABLE 2.

Reduction phase combined decongestive therapy including medium stretch and Mobiderm bandages

treatment regimen including the Mobiderm bandage, however, led to an additional reduction in limb volume. Modifications can be made to CDT, such as changing the type of bandaging material used, to maximise the effect of treatment. Once the patient’s limb size has reduced sufficiently, he or she can undergo plastic surgery in order to remove excess skin flaps.

LVA surgery appears to have enhanced the effects achieved during CDT at this point in time. It will be interesting to follow this patient’s management of her lymphedema to see how successful the LVA procedure is in maintaining the reductions achieved in the long term.

Conclusion – Over the course of just over 4 years, the patient had a significant and consistent reduction in edema volume using a combined approach to treatment. The effectiveness of each strategy appears to be cumulative and complimentary. It is uncertain from this case study whether the effect achieved after the final LVA surgery was enhanced by the excellent reduction attained in the first phases of CDT. Conversely, we do not know whether the effects achieved by CDT will be maintained or improved upon by the LVA surgery. LP Excerpted with permission from Journal of Lymphoedema, 2018, Vol 13, No 1.

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

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Patient Perspective

The long road to diagnosis, acceptance, and advocacy Bitter journeys can have positive resolutions A reminder that life is what you make it

By Berlange Presilus

I

was born with Klippel Trenaunay Syndrome.

Despite being born with a very rare syndrome, I am showing the world that beauty is attitude; it is beyond what the eyes can see. Born with a purpose to teach, my reality tells its own story. Hopefully it will empower others to dream out loud, own their truth and believe in the endless possibilities.

Growing up I felt ugly. I hated my leg; I hated being in pain all the time and unable to do what other kids were doing. My life has been a roller coaster of pain and emotions and I never felt good enough. I spent most of my teenage years in a dark place asking God “why me?

What did I do to deserve this?”

I have been teased, laughed at and bullied for being different. My pain has always been bitter. I was always low on energy, had severe migraines, restlessness and paranoid.

I would wake up from sleep with a cold leg due to insufficient blood circulation and numb curled toes from the subsequent

cramps. There were times where I would be taking a shower and I would feel a sharp stabbing pain and consequentially feel weak, only to realize that I had been bleeding without any apparent wounds.

I began to seek medical help nonstop but to no avail. The first doctor didn’t know anything about my condition and there was nothing he could’ve done. The second, third, fourth… and onward were just as clueless as the first doctor. However, it was suggested to amputate my leg in order to eliminate the suffering caused by the pains and circulatory complications. Despite my medical situation, sleepless nights and restless days, I was able to hide my pain and stress, and find some relief through laughter and my own fashion sense.

My pain could be so utterly horrific that I preferred to hide most times. I felt so disconnected and I didn’t know how to explain what I was going through to people.

I never wanted momentary pity while the

Berlange Presilus is a fashion (role) model, advocate, public speaker, ambassador and entrepreneur in Toronto, Canada. Born in Haiti as the only daughter amongst two boys, she learned to be strong and fight for her rights, which served as a preparation to face life living with KTS and lymphedema. www.bellenge.com

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pain remained. Subsequently, this continued to feed into my depression.

In 2005 I made the choice to live a little, forget that I was “abnormal”, and believed that my right leg was not so unusual. However, that didn’t last long. Two times in that year, I had a terrible blood clot, which led to me being rushed to the hospital.

I was given some medication that only put me to sleep and I was kept at the hospital for further treatments. However, no helpful treatments were given beyond the sleeping medication, because the doctors didn’t know anything about my syndrome or the cause of swellings. In that same year, an unbearable pain struck once again. It was extraordinary and uncontrollable. This time I thought that was it. My leg turned purple and my veins were popping. The following day, parts of my leg got very lumpy and my skin slowly began to soften. Two days later I had different open wounds with blood seeping through them. In the midst of all this, I never stopped praying. I prayed for my pain to go away, but it never did. So, I continued to seek medical help nonstop. Tired, helpless and suicidal, I decided to see one last doctor. I did not know what to expect, but the unexpected happened. The doctor Spring 2019

2019-02-28 8:20 AM

comfortably explained that this is a rare condition that impedes proper blood circulation. “You are not getting enough blood circulation to your heart which is a very bad sign.” He then went on about his disbelief of me having my menstrual cycle. With confidence, yet in deep regret, he finally broke the worst news to me…

He said, “YOU WILL DIE BEFORE THE AGE OF 19”.

My world came crashing down. I became more depressed. Anxiety and insecurities had a greater effect on me in comparison to the actual physical pain. I battled with turbulent mood swings and selfconsciousness. I became numb to my abilities. My pains and trials were completely unbearable. I stopped wrestling with my inner-self and caring about not feeling good. I stopped caring about life all together. However, I tried to always keep a smile in public, but slowly feeling dead on the inside while I continued to suffer from chronic pains.

At last, I met someone whom I like to call an angel…I met Dr. Garnette. He wasn’t completely certain of what was ailing me, but confirmed signs of lymphedema.

Subsequently, I did several surgeries and follow-up sclerotherapies to fix the veins.

However, more superficial veins continued to form and my leg swellings became 10 times worse. It was recommended that I wear compression stockings to help with the swelling and to keep my veins under control. I continued to suffer over the years.

In 2011 I flew to Cuba. It was there and then I got diagnosed with Klippel Trenaunay Syndrome. Although I found out that there wasn’t any cure for my condition, I further researched the syndrome and became empowered to nurture my abilities regardless of how strong or weak they are. I decided to own my truth boldly and live life with a grateful heart and full dedication, raising awareness and inspire the masses.

I grew up thinking that I was alone. I had no role model and no one to relate to. For that reason, I grew up confused, lonely, hopeless and unfitting. Once I recognized the strength and power within me, I made the decision to become the role

Once I recognized the strength and power within me, I made the decision to become that role model I needed while growing up, to others. model I needed while growing up, to others. I have created a platform called B-Revealed, aiming to reconcile one’s views towards the stigma around different chronic illnesses and perceptions of beauty in society. To this day, there are times when I wake up with unbearable pain and ulcers draining with nasty fluid. I will feel sharp stabs in my heart and then my heart will skip a beat and continue to beat faster than normal. Other times, I will have to mentally drift to an unknown fantasy world just to escape my reality of pain. Nonetheless, I continue to put my best foot forward and remain optimistic….

Every day I put on my compression stockings and kick up my feet against the wall for at least 20 minutes and try to stay active, eat healthy and drink LOTS of water.

My mission is to show the world that despite being born with such a rare syndrome, beauty is introspective perception and one’s attitude towards themselves and others.

Beauty is not about outward appearances, but rather, the make up of one’s character.

Instead of chasing perfection and inspiring to be perfect, I became comfortable in being imperfectly PERFECT. While embracing my flaws, seeing beauty within myself, irrespective of society’s perception and loving myself unconditionally. LP

Editor’s Note: Klippel-Trenaunay syndrome (KTS) is a rare disorder that is present at birth (congenital) involving malformation of blood and lymph vessels plus abnormal growth of soft and bone tissue. KTS occurs most frequently in the lower limb and is frequently associated with lymphedema.

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Helpful Suggestions

Hints and tips Prevention As I have lymphedema in my arm and love to garden but attract biting insects, before going outside now I use an insect repellent on exposed skin. I use (Johnson’s OFF product ‘Botanicals’ lotion based on an ingredient found in the lemon eucalyptus plant). If I do get bitten I use ‘After bite’ right away it has saved many a trip for medical attention.

Elevate at night Elevation of a lymphedema limb, either upper or lower, can be very effective to help reduce edema volume overnight. One common error that patients make is that they elevate their arm up over their head at night.

This is a very risky position to put the shoulder in as the rotator cuff tendons are at high risk for impingement. Avoid this overhead position and instead elevate the arm on pillows either lying on your back or side. Also for any hand swelling, the hand must be above the level of the elbow to promote drainage of the hand.

Lori Radke, Edmonton, Alberta

Sharpies help mark time Replacing compression garments regularly is important to ensure the

appropriate level of compression is most effective in managing your lymphedema. On average, most garments need to be replaced every three or four months. However, don’t throw out your old stretched out garments.

They can be kept as a backup, for use in chlorinated pools or to wear when doing messy tasks (gardening, painting etc.).

To help differentiate between your old and new garments, upon receiving a new compression garment—use a black marker and record the date on the label.

Summ16er 20

LP

Send us your hints and tips.

Make it easier for those living with lymphedema. Share your day-to-day living tips. We invite patients, caregivers and health professionals to send in your suggestions and photos to pathways@canadalymph.ca.

Improving the quality of care for patients with lymphedema.

KLOSE LYMPHEDEMA CONFERENCE 2019 MAY 2- 4 •

Denver, Colorado

PL ATINUM SPONSOR

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Research and News

Did you know?

Kinesiotaping is a technique that consists of applying elastic tape for orthopedic dysfunctions.

This technique is commonly used in clinical practice as a complementary intervention to treat lymphedema. In theory, when the taping is applied to the skin, the skin is elevated, which allows the lymphatic vessels underneath to better absorb and drain the excess fluid. The goal is to re-direct the fluid from a higher-pressure area (congested or swollen area) into a lower pressure area (area with normal lymphatic flow). The purpose of this review study was to examine the benefit of taping as a treatment to reduce lymphedema.

Five scientific databases were searched and a total of 9 articles were included in the study (n=5 randomized controlled studies, n= 2 case studies, n= 2 single-group studies). Overall, the studies used many different methods to apply the tape, with some showing reductions in lymphedema and others not. Although reported as safe and well tolerated, the authors were not able to come to a clear

conclusion on the benefit of taping alone.

There was some evidence supporting the use of taping as an added treatment to complex physiotherapy for individuals in the initial stages of lymphedema. Given the different ways the tape can be applied, a consensus on a standardized taping protocol is needed prior to further research.

Source: Thomaz JP, Dias TDSM, de Rezende LF. Effect of taping as treatment to reduce breast cancer lymphedema: literature review. Journal Vascular Brasileiro.

2018;17(2):136-140. doi:10.1590/1677-5449.007217.

wanted to see if bioimpedance-specific electrodes could be replaced with the ECG cardiac electrodes. RESULTS: The authors found that calculating the interlimb BIS ratios from limb resistance (the resistance of the unaffected limb divided by the resistance of the affected limb) removed the effect of electrode size. The results showed that different factors were related to the accuracy of measurement including the electrode age, the drive electrode position on the limb, electrode width and surface contact area.

Electrode equivalence for use in Bioimpedance Spectroscopy assessment of lymphedema

Bioimpedance spectroscopy (BIS) is one of the tools used in research and clinical practice to measure the tissue extracellular fluid that can inform early detection and monitoring of lymphedema. With BIS, an unperceivable electrical current is passed through the body tissue through electrodes placed on the skin surface. BIS measures the resistance to the electrical flow through the extracellular fluid.

With lymphedema, there is more fluid in the limb, and the electrical current can pass more easily. There are factors, however, that can lead to inaccurate BIS measurements.

This study aimed to investigate one source of measurement error—the choice of electrodes used on the skin. Specifically the authors

Photo: ImpediMed

Photo: Shutterstock

Effect of taping as treatment to reduce breast cancer lymphedema: Literature review

CONCLUSION: In clinical practice, the sources of error in lymphedema limb measures via BIS can be avoided using the interlimb BIS ratio.

Cardiac electrodes can be used as an alternative to measure limb resistance and calculate interlimb BIS ratios. The study authors suggested developing a protocol for BIS use in the clinical setting specifically for the electrode positioning and storage to improve accuracy.

Source: Svensson, B. J., Dylke, E. S., Ward, L. C., & Kilbreath, S. L. (2018). Electrode Equivalence for Use in Bioimpedance Spectroscopy Assessment of Lymphedema. Lymphatic Research and Biology. LP

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INSPIRATION, INFORMATION AND OPPORTUNITY FOR CANADIANS WITH DISABILITIES

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Education Education

Canadian and International Events May 17-19th, 2019 Sydney, Australia

The Australasian Lymphedema Association will host their 2019 ALA Symposium in Sydney, Australia.

The 3-day program will feature a whole day plenary session, workshops, social events and more. n www.lymphoedema.org.au

May 30-June 1, 2019 Austin, Texas

The Lymphatic Forum 2019; Exploring the Lymphatic Continuum is hosted by Texas A&M University, and will feature world-renowned speakers. n www.navbo.org/events/lymphatic-2019

June 13-16, 2019 Chicago, USA

The 9th International Lymphoedema Framework Conference co-hosted by the American Lymphedema Framework Project (ALFP) will be held at the Hyatt Regency in downtown Chicago. The abstract submission deadline is January 7 and online registration is now open. n www.lympho.org

September 23-28 2019 Buenos Aires, Argentina November 1-2, 2019 Toronto, Canada

International Society of Lymphology XXVII World Congress 2019. Lymph in Motion – Beyond Lymphatics. www.lymphology2019.com

n

Canadian Lymphedema Framework is bringing their 2019 National Conference back to Canada’s largest city.

The program is 2 days in length for health professionals and 1.5 days for the patient summit. The venue is the Marriott Toronto Airport Hotel. n www.canadalymph.ca

Happy 20th Anniversary to LANA Lymphology Association of North America (LANA) is celebrating its 20th Anniversary by offering the LANA exam at half price for ALL of 2019.

This discount is available to both past and current students who are eligible to register in 2019 to take the LANA examination. This reduction will offer the exam for $215* instead of the current price of $430.

Please help LANA share this opportunity with your colleagues. *This applies to new applicants only. All prices noted are in US dollars.

www.clt-lana.org

The CLF distributes Pathways including customized inserts through its provincial partners.

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

Platinum Sponsorship

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

Silver Sponsorship

Lymphedema Association of Nova Scotia Lymphedema Association of Ontario

CANADIAN LYMPHEDEMA FRAMEWORK

PARTENARIAT CANADIEN DU LYMPHOEDÈME

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

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

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Visit our new LymphCommunity section today at jobstcanada.ca!

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