Canada’s Lymphedema Magazine
Pathways
Acc e Digit ss Edit al ion See p age 4
SPRING 2021
Empowering patients and professionals
Compression counters cellulitis
Telehealth improves accessibility
Surgical rehabilitation protocol NOUVEAU...
une sélection d’articles traduits en français disponible au fr.infolympho.ca/revue-pathways
Editor’s Message
Moving evidence into practice
C
ompression not only reduces and maintains limb volume but now we have evidence that it also offers protection from possible infections for people living with lymphedema. Our feature article is an excellent report of a randomized trial in this area where there has been little research. Elizabeth Webb, a physiotherapist from Australia, provides useful statistics and references about the significant role that compression has on reducing recurrent cellulitis. Her report is important in the education of health care providers.
Many of you took the time to participate in our readers survey last fall. We thank you for your feedback that helps us continually improve the magazine. Your complimentary comments were very heartwarming. However, it is written in lay language so patients can also understand how valuable compression is in lymphedema management. Be sure to also read the Did You Know section on cellulitis incidence in lymphedema patients. As the second part to the surgery article by Dr. James Kennedy (Winter 2021), Lori Radke, a member of our Editorial Board, shares post surgical rehabilitation protocol in Calgary for patients who have had lymphatic surgery. An integrated program and a team
approach between the surgeon and the lymphedema therapist is the key to realistic expectations and successful results for those who choose a surgical option. For more conservative lymphedema therapy, Jean Ann Ryan RN, showcases how a successful telehealth program makes lymphedema care accessible in remote areas, especially during this period of self-distancing. Telehealth programs will no doubt become more prominent in the future, even well after the COVID pandemic is over. We invite other clinicians to share their telehealth models and programs and how they are managing health care remotely. Graham Snell is an exercise advocate. His story showcases how a positive attitude and dedication to a routine are what changed everything for him to manage the life-changing diagnosis of lymphedema. Even during this time when gyms and public exercise opportunities are scarce, there are many ways to keep active outdoors by walking or running, and indoors with various exercise apps etc. We hope Graham’s inspirational and aspirational story will motive our readers to become more active. We’ve had several doctors and researchers weigh in on the controversial articles on lipedema we published in the Fall 2020 and Winter 2021 issues. We are publishing both a letter to the Editor and a rebuttal response to that letter in a new section entitled Point–counterpoint. It is important for readers to read both points of view on the condition of lipedema; what it is, and more
importantly what it isn’t. We thank both teams of authors for their passionate views on this topic and giving us the opportunity to shed light on critical points of view on lipedema, in the proper context of effective management of the condition. Many of you took the time to participate in our readers’ survey last fall. We thank you for your feedback that helps us continually improve the magazine and are pleased to share the survey results which were very positive. Your complimentary comments were heartwarming. The CLF is steadily moving forward in its knowledge translation strategy. Collaborative partnerships with Mitacs and the University of Alberta are supporting the delivery of an accredited e-learning certificate course targeted at family physicians, nurses and rehabilitation professionals. The launch is scheduled for Spring, with a prestigious roster of instructors. And in a new collaboration with Wounds Canada, the 2021 National Lymphedema conference will be held as a highly interactive virtual event this fall. “Moving Evidence into Practice” is the theme of this bi-annual conference, presented on an exciting stateof-the-art technology platform. Online sessions leading up to the event will offer additional educational opportunities, including how to maximize networking and learning from a virtual conference. Join the CLF mailing list for updated information on the call for abstracts, agenda and registration. Email conference@canadalymph.ca. LP
Stay informed digitally Anna Kennedy
Now, when you subscribe to Pathways, either directly or through a provincial association, the digital edition is included FREE! Learn more about added benefits the digital copy offers by sending an email to digitalpathways@canadalymph.ca.
www.canadalymph.ca Spring 2021
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Contents
Compression counters cellulitis
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How compression therapy substantially reduces the recurrence of cellulitis.
....................................................
Spring 2021 n Volume 10 Issue 2
Surgical rehabilitation guidelines
Publisher Pathways is published four times per year by BCS Communications Ltd. on behalf of the Canadian Lymphedema Framework.
CANADIAN LYMPHEDEMA FRAMEWORK
PARTENARIAT CANADIEN DU LYMPHOEDÈME
Editorial Board Angela Dunphy Mei Fu PhD RN FAAN Pamela Hodgson PT David Keast MD FCFP Lori Radke PT CLT Anna Towers MD FCFP
Integrating rehabilitation therapy into surgical programs.
.................................................... Improving accessibility through telehealth Addressing barriers to service and enhancing connections with patients.
........................................................................ Results from the 2020 survey.
......................................................
Editorial Assistants Catherine Andrew Nicole Boulet
Subscription Rates (1 year) Canada - $30. United States - $60. International - $75. Single copies and back issues - $8. 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 Photos in this issue: G.Snell, Calvary Public Hospital Bruce Lymphedema Service, Massachusetts Medical Society, Holy Cross Centre and CanStock.
Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada
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Pathways readers have spoken
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.
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Readers are asking...
COVID vaccine, self-care and reflexology.
? ....
.................................................
Exercise and lymphedema
Dedication to moving lymph every day.
.................................................. Point-counterpoint Debating discussion on lipedema.
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More Helpful Suggestions...
Set reminders for exercise. Protect your feet. Adapt your workspace. Make resolutions any time of year.
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Research Advances
Cellulitis in chronic edema of the lower leg. Compression pressure variability in bandaging. Clinical pearls for providers.
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Education/Events/Letters
Canadian and International Events. Letters to the Editor.
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FOR SUBSCRIBERS........ The price of the annual subscription includes both a print and digital copy of Pathways. Email digitalpathways@canadalymph.ca
Spring 2021
Research Advances
Compression counters cellulitis How compression therapy substantially reduces the recurrence of cellulitis By Elizabeth Webb
This following is a brief synopsis of the results of the randomised controlled trial ‘Compression Therapy to Prevent Recurrent Cellulitis of the Leg’. The full report can be accessed through the New England Journal of Medicine. www.nejm.org/doi/full/10.1056/NEJMoa1917197 What is cellulitis? Cellulitis is a common bacterial infection of the skin and tissue beneath the skin. It presents as a red spreading rash that can be hot, painful, and/or swollen. It can occur anywhere on the body but most often occurs in legs. For some people it can make them very sick, requiring hospital admission. Although many people have never heard of cellulitis, in the United States it leads to over 650,000 hospital admissions per year and it is estimated there are 14.5 million cases annually.1 Those with chronic edema (edema lasting three or more months) are at greater risk of developing cellulitis. A recent study by Burian et al. showed that in patients with chronic edema, 16% were diagnosed with cellulitis within the last year, and 37% had suffered an episode during their lifetime.2 Cellulitis reoccurs One of the challenges with cellulitis is that it is likely to reoccur. Up to 47% of those who have experienced an episode of cellulitis will have a repeat infection within three years3 with some people suffering multiple infections. This can cause significant personal challenges, impeding people’s ability to work and function. Similarly, it can contribute to substantial social challenges, causing extended periods of sick leave and often contributing significant
costs to the healthcare system, including the risks and demands of antibiotics in a climate of increasing antibiotic resistance. Cellulitis/edema – a vicious cycle Unfortunately people with chronic edema/ lymphedema are already at an increased risk of developing cellulitis. Sadly, when an episode of cellulitis does occur, it damages the lymphatic vessels further, leading to worsening swelling and even greater risk of repeated cellulitis infections, making it a vicious cycle.
Elizabeth Webb, PT is a physiotherapist working in the lymphedema service at Calvary Public Hospital Bruce in Canberra, Australia. She is currently completing a PhD through the University of Canberra investigating the impact and cost of compression therapy on recurrent cellulitis.
Spring 2021
Preventing cellulitis Previously the only known effective treatment to prevent cellulitis was antibiotics. Prophylactic antibiotics are effective in preventing cellulitis, but only when they are being taken, with the effect diminishing once stopped. For many years, clinicians and experts in the field of lymphedema have believed that managing chronic edema with compression would decrease the risk of cellulitis infections, but until recently, there has not been sufficient evidence to support this theory. New research The Calvary Public Hospital Bruce lymphedema service in Australia, started a randomized controlled trial to explore whether managing chronic edema with compression therapy would Ly m p h e d e m a p a t h w a y s . c a 5
prevent cellulitis from reoccurring in the legs.4 Participants with chronic leg edema who had a history of two or more episodes of cellulitis were eligible to participate. All participants were educated on the importance of good skin care (regular moisturizing and preventing cuts, scratches, bites and fungal infections between toes), healthy weight management and regular exercise. However, only approximately half of the participants were given compression therapy (compression garments with or without a short period of compression bandaging). We then monitored the compression and the control groups for recurrent episodes of cellulitis, cellulitis-related hospital admissions and leg volume every six months.
Research findings Eighty-four participants were enrolled in the trial. Many had multiple factors contributing to their edema, with the most common factors including obesity, venous disease, trauma or surgery. The average age was 64 and most patients suffered from obesity (with an average Body Mass Index of 41). Forty-one patients were randomly selected to be provided with compression therapy. Of these, 59% required a short period (usually between 3-5 days) of compression bandaging to reduce their edema prior to measuring for and fitting of compression garments. Almost all garments provided were knee high, with over half being custom-made due to patients’
COMPRESSION THERAPY HAS GLOBAL IMPACT A WORLD-FIRST RANDOMISED TRIAL
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CHRONIC OEDEMA IS A BIG PROBLEM
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Chronic oedema of the leg is a risk factor for cellulitis. Cellulitis contributes to about 130,000 hospital presentations per year, resulting in approximately 70,000 hospital admissions per year.
CAN CELLULITIS BE PREVENTED? Cellulitis is associated with high health costs and adverse health outcomes. Researchers set out to test whether compression therapy could prevent recurrent cellulitis of the leg.
3 WORLD-FIRST TRIAL
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Patients with chronic oedema of the leg and recurrent cellulitis participated in this world-first, single-centre, nonblinded trial. Skilled lymphoedema therapists applied compression therapy on 41 of 84 patients with oedema of the leg and recurrent cellulitis.
THE RESULTS ARE EXCITING Compression therapy resulted in a: • 77% reduction in risk of cellulitis • 50% reduction in hospitalisations showing it to be an effective non-pharmaceutical intervention.
5 IT’S A WRAP Compression therapy resulted in a lower incidence of recurrence of cellulitis than conservative treatment. Proudly brought to you by:
CHECK OUT THE RESEARCH PAPER AT TINYURL.COM/Y5DL7F8B
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Compression bandaging. legs being outside the ready-made garment standard size range. Approximately 75% of the garments prescribed were flat-knit. Participants were asked to wear their compression garments daily and garments were usually replaced every 6-12 months. Of those assigned to compression therapy, almost 90% reported wearing their garments 4 or more days per week. Halfway through the trial, a planned interim analysis identified a clear difference between the two groups, demonstrating that compression therapy did substantially reduce the recurrence of cellulitis. The study was reviewed by an independent committee who believed that continuing the trial would be unethical and therefore recommended that the trial be stopped early and that every patient be provided compression therapy. Cellulitis reoccurred in 40% (17/43) of those without compression garments (the control group), and only 15% (6/41) of those with them. Not only were there fewer episodes of cellulitis in the compression group but they also tended to occur later compared to the control group. This demonstrated that compression therapy reduced the risk of cellulitis reoccurring by a staggering 77% in those who received treatment. Further, compression therapy contributed to a significantly reduced leg volume by an average of 362ml over 18 months. This is a substantial change in leg volume considering it was only measured in a small portion of the leg between the ankle and the knee. During the trial 14% (6/43) of the control group were hospitalized for cellulitis, compared to only 7% (3/41) of those in the compression group. Spring 2021
Compression garments.
obesity, or who have had multiple episodes of cellulitis (>3).5 As all the patients in this study had one or more of these risk factors, it is very exciting to discover compression therapy is an effective treatment in those at risk of failure with prophylactic antibiotics. How does compression therapy prevent cellulitis? The relationship between cellulitis and edema seems to be multifactorial. If the lymphatic system is impaired this not only causes chronic edema but may also impair the body’s immune response to pathogens. Further,
Whilst this result was consistent with the primary outcome of cellulitis recurrence, it was not statistically significant which was likely related to the small number of study participants. Before this trial, antibiotics were the only known prophylactic treatment for cellulitis. However current research suggests that they are less effective for those who suffer from edema,
chronic edema can damage skin integrity allowing for opportunistic bacteria to breach the skin barrier and can provide a rich medium in which bacteria can flourish. By improving lymphatic drainage, compression therapy may therefore prevent cellulitis by reducing edema volume and thus the medium for bacterial growth, improving skin integrity to stop bacteria breaching the skin and/or improving the body’s immune response to pathogens. LP A full set of references, including the results of the trial can be found at www.lymphedemapathways.ca
Key points 4 Compression therapy reduced the risk of cellulitis by 77% in patients with chronic edema and a history of two or more episodes of cellulitis. 4 Compression therapy reduced the risk of cellulitis in a cohort of patients for whom prophylactic antibiotics are less effective (i.e. patients with edema, obesity and/or a history of three of more episodes of cellulitis). 4 The clinical implications are that compression therapy should become standard practice for people with chronic edema experiencing cellulitis. 4 Preventing cellulitis may reduce the use of antibiotics, which is important in our current climate of increasing antibiotic resistance.
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Spring 2021
Surgical Rehabilitation
Surgical rehabilitation guidelines Integrating rehabilitation therapy into surgical programs By Lori Radke
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n follow-up to the recent Contemporary Concepts in Lymphatic Surgery article by Dr. James Kennedy (Pathways, Winter 2020/21) this article will explore the lymphedema management process that occurs peri-operatively at the Rehabilitation Oncology clinic in Calgary, Alberta. In operation since 2009, this clinic provides outpatient rehabilitation, including lymphedema assessment and treatment, for cancer patients. The clinic is part of the Supportive Care: Psychosocial and Rehabilitation Oncology department of the Tom Baker Cancer Center, which is under the umbrella of Cancer Care Alberta. The clinic works in collaboration with Dr. Kennedy to ensure that a patient’s lymphedema has been optimally conservatively managed prior to undergoing surgery. Non-cancer lymphedema patients are treated similarly at the Calgary Ambulatory Lymphedema Service (CALS) clinic. Different scenarios illustrate the referral pathways between the rehabilitation clinics (conservative therapy) and Dr. Kennedy’s clinic. In Dr. Kennedy’s initial surgical consultation with a patient, he does not focus only on surgery. His assessment includes a thorough history and review of the conservative management that a patient has tried in the past and currently follows. If they have not seen a therapist for lymphedema management, then a referral to the Rehabilitation Oncology clinic or one of its provincial counterparts is the first step, before any surgical options are explored. Many referrals to the clinic have resulted in successful conservative management, eliminating the need for surgery. Another scenario is that Dr. Kennedy
Holy Cross Centre in Calgary, Alberta. advises the patient that surgery is not currently indicated as their lymphedema is already being well maintained with their present conservative measures to which they adhere. Patients are made aware that they can be referred again if their situation changes. They are often relieved to hear this and happy to continue with their maintenance plan. The Rehabilitation Oncology clinic is a frequent referral source to Dr. Kennedy as patients often have questions regarding possible surgical options. We make it very clear to the patients that a resolution of their lymphedema or the elimination of the need for compression garments is not a realistic outcome of surgery. Lymphedema maintenance will still include compression garments, sometimes including night compression. A primary reason for a surgical referral is when the patient has frequent cellulitis infections. All the procedures that Dr. Kennedy currently performs, including lymphovenous anastomosis (LVA), liposuction and lymph node
Lori Radke, PT, CLT is a physiotherapist who has worked in Alberta for more than 30 years since graduating from the University of Alberta in 1988. She has a passion for edema/lymphedema management and oncology. Radke has led the Rehabilitation Oncology program in Calgary since 2009. She is now the Clinical Practise Lead of the Cancer Care Alberta Rehab Teams.
Spring 2021
“ Surgical management for lymphedema is still in its infancy and comprehensively relies on a coordinated interplay with conservative therapy.”
-Dr. Kennedy
transfers, have demonstrated a reduction in cellulitis rates post-surgery.1-8 If the cellulitis episodes can be prevented, or at least reduced, then the outcome of conservative treatments is significantly improved. Tissue integrity and skin condition are enhanced, and limb volumes can usually be reduced over time, or at least maintained. “Defining appropriate patient selection remains challenging but should center around a few fundamental concepts. A compliant patient, with worsening limb function, minimal improvement using nonsurgical means for 12 months. Realistic expectations are paramount but often difficult to reconcile in the age of Internet medicine and exaggerated claims by a multitude of clinics and surgeons.” Ideally, a patient is referred to the clinic for a pre-operative assessment as soon as the surgical consult occurs. If they are a current patient of one of the Rehabilitation Oncology Ly m p h e d e m a p a t h w a y s . c a 9
CHART 1
Lymphedema surgical post-operative protocols Dr. James Kennedy, Calgary, Alberta
Suction Assisted Lipectomy/ Liposuction 1 See 2-3 days post-op to begin compression bandaging Images show post liposuction, day two. again- remove surgical dressings. Wash limb with soap and water. No immersion in a bathtub or hot tub. Showering allowed. Antibiotics prescribed for 3-5 days (usually Keflex or Clindamycin) 2 Remove steri-strips at about 14 days, if still present. 3 Continue compression bandaging twice a week for 2-4 weeks, or until limb volumes stabilize according to two different sets of measurements. 4 Fit with new compression garments, custom or readymade. May need to re-bandage if any increase in volume occurs before new garments arrive. 5 Continue clinic protocol for lymphedema maintenance. Lymphovenous Anastomoses Same protocol as above but compression delayed for 2 weeks post-op.
1
Lymph node transfers Patient admitted to hospital for 3-5 days. 2 Drains typically removed on Post liposuction, day ten. day 7 post surgery. 3 Compression wrapping started at 2 weeks; may be started sooner post groin lymph node transplant combined with free flap breast reconstruction. 1
Modified Charles Procedure (non-cancer related lymphedema) Drains removed on day 7 post surgery 2 Wound care to incision line 3 Can start compression within 2-3 days. If drain in place or patient has skin graft, start at 7 days. 1
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Photos: Tom Baker Centre (Consent obtained from all subjects.)
All procedures 1 Referral sent to Rehabilitation Oncology clinic as soon as surgery is booked with Alberta Referral Directory form. The patient could go to Calgary, Red Deer, Lethbridge, or Edmonton depending where they are seen for their lymphedema treatments. Those with non-cancer lymphedema go to the Calgary Ambulatory Lymphedema Service (CALS). 2 Review of current lymphedema maintenance plan. 3 Limb volume assessment with Perometer or circumferential volumetric measurements. 4 Edema reduction for 1-2 weeks prior to surgery with compression bandaging (usually 2-4 appointments). 5 Plan for post-surgical compression day garments/ night compression.
clinics, they are referred back to that same clinic prior to surgery. Pre-op assessments include limb volume measurements, either with a Perometer 9,10 or circumferential measurements. All rehabilitation oncology clinics in Alberta currently have a Perometer used for upper limb measurements. Usually, lower limb lymphedema is measured using a tape measure and limb volume calculation formula, except in the Edmonton clinic, which uses a Perometer for both upper and lower limb volumes. The assessment also includes tissue palpation for quality of tissue and fibrosis, skin changes/wounds, appropriate joint ROM measurements, compression garment reassessment, and need/re-evaluation for night compression. Patients are seen for active reduction phase treatment for 1-2 weeks prior to the surgery, or possibly 3-4 weeks if they have more edema. This is done primarily with compression therapy using multi-layer bandages applied by either a therapist or therapist assistant.11-13 Coban 2 short stretch bandages, are applied to the full limb and changed twice a week. If a patient does not tolerate Coban, then Comprilan multi-layer bandages are used and changed 3-4 times per week. Manual Lymph Drainage is included as indicated. Education, exercise prescription and skin care are a part of every visit to the clinic. Also any referrals for psychosocial support, including social work for financial assistance, would be made prior to surgery. The Alberta Aids to Daily Living (AADL) provides compression garments for lymphedema patients using a cost-share program. All patients can be authorized for either three ready-made garments or two custom-made garments per limb (per 12-month period) if they do not have private insurance coverage. Post-surgical lymphedema treatments begin on day 2-3 post-op (Chart 1). There are multiple dressings applied to the limb in surgery and a layer of Coban holds the dressings in place. The dressings are removed at the clinic and the limb is washed and measured. Steri-strips cover the incision sites and remain in place for 10-14 days. Compression treatments continue until the limb volume stabilizes, usually 2-3 weeks, and then a fitting occurs with a certified AADL vendor for new compression garments. If a custom garment is necessary, the patient may continue bandaging at home, use an old Spring 2021
Clinic Perometer.
garment or their night compression system, or be booked to come back for bandaging appointments prior to receiving their garments. We have not seen a significant change in limb volumes in this time period while waiting for the garments, which can be 10-14 days. We have also not seen any post-op infections out of approximately 20 surgeries. The other benefit of the surgery is the use of the SPY, an intra-operative fluorescence imaging system, which visualizes and analyzes the lymphatic system in the affected limb. This information has informed clinicians and patients to better understand the lymphatic damage and drainage pattern in their limb. Occasionally we have found out that there are no functioning lymphatics, which helps to
understand the limitations of certain surgery techniques and guide conservative treatments. “It is worth reiterating that despite improvements in surgical options, it has not supplanted non-surgical therapy. Instead, surgery has more recently become an additional modality in an integrated treatment strategy for lymphedema patients that still requires lifelong self-care and management.” Lymphedema surgery in Calgary was initiated by Dr. Kennedy in 2015. Of the surgeries he has performed, lipectomy was by far the most frequent, which may reflect the later stage of lymphedema that is present when patients seek a surgical consult. Some patients may have multiple procedures; i.e. LVA followed by a liposuction, or repeated liposuction on a limb. The first patient we saw at our clinic had an LVA on her right upper limb and subsequently suction-assisted lipectomy the following year. Our clinic became involved in her care after the second surgery, and included are some photos of the patient post-liposuction day 2 and then 1 week later. This patient reports a marked reduction in episodes of cellulitis since these procedures were done in 2016. As with all active therapy patients, those
who have undergone lymphedema surgery are reassessed at 3 months, 6 months, and 1 year. After that, they are seen once a year to review and assess their maintenance plan. If there is a change in limb size, symptoms or tissue changes, or if they have cellulitis, they are seen sooner. Patients may require active treatment to reduce these changes, or an update in their maintenance plan (compression day garments, night compression systems, exercise, skin care, self MLD, compression pump, or kinesiotape).14,15 All Cancer Care Alberta Rehabilitation Oncology clinics use the same referral form and process. The Alberta Referral Directory is AHS’s designated online system of information on how to refer to a variety of medical clinics and services. There is collaboration between Rehabilitation Oncology clinics in Calgary, Edmonton, Red Deer, Lethbridge and soon-tobe-open Grande Prairie to coordinate patient care. This provincial coordination enhances the “care closer to home approach” that is a priority for Cancer Care Alberta. LP A full set of references can be found at www.lymphedemapathways.ca
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L y m p h e d e m a p a t h w a y s . c a 11
Clinical Perspective
Improving accessibility through telehealth Addressing barriers to service and enhancing connections with patients By Jean Ann Ryan
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s the lymphedema nurse coordinator at the Dr. H. Bliss Murphy Cancer Center in St. John’s NL, I have provincial oncology scope of service. Even pre-pandemic, inaccessibility was often identified by patients, families and referral sources as a barrier to lymphedema information and treatment in Newfoundland. This geographical barrier often led to a disconnection between the St. John’s based lymphedema therapist and the patient, especially those living in northern coastal communities of Newfoundland and Labrador. Many consults were done over the phone trying to tease out how to manage patients from a distance. Patients often travelled to St. John’s for lymphedema education and treatment, taking time away from their families, their work and incurring extra cost associated with travel and accommodation. Other patients opted not to attend the visit and would only come once their lymphedema progressed to a later stage and they could no longer manage on their own. The Dr. H. Bliss Murphy Cancer Centre implemented the Lymphedema Telehealth Program in January 2018 to address this barrier to service, with the support of management and the Newfoundland and Labrador Center for Health Information (NLCHI). The efficacy of telehealth in reducing travel and in increasing access to specialty services regardless of geographical location is well researched. Existing technology was in place in Newfoundland and Labrador with a full team of supportive staff available to help
roll out the program. Telehealth is now used for lymphedema initial consults, education and follow up. If the patient needs to be bandaged, or taught to bandage, they then fall into the category of needing to come for face-to-face treatment. The goal of the program is to offer lymphedema services and support to patients who may not be able to, or prefer not to, travel to St. John’s. After one year of delivering the telehealth program, a satisfaction survey was sent to 50 patients who used the service. The purpose of the satisfaction survey was to assess primarily if the patients’ lymphedema needs were addressed and secondarily if access to the service was enhanced with the use of telehealth. Information was collected through a mail-out survey and/or a telephone follow up following a telehealth session. Questions covered… • Accessibility to lymphedema services • Improved wait times • Anticipated/avoided travel cost • Anticipated/ avoided personal expenses and loss of work • Ease of use of the technology • The overall telehealth experience • More importantly, if the patient’s lymphedema needs were met The results of the survey confirmed that our patients were travelling long distances, experiencing financial burden and taking time away from family and work when needed for
Jean Ann Ryan, RN, BN, CLT is the Provincial Lymphedema Nurse Coordinator at the Dr. H Bliss Murphy Cancer Centre in St. John’s, NL. Her focus is on improving lymphedema outcomes, aligning services and providing education. Jean Ann was instrumental in starting the Lymphedema Association of Newfoundland and Labrador and remains an active member.
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lymphedema care. Access to the telehealth program alleviated some of that burden. Time away from family is important in all aspects of health care but especially in the oncology setting. Once again, our patients identified satisfaction in not having to travel for the appointment. The results showed wait times improved and the feedback on meeting patients’ needs was positive. Patients felt if they needed to travel for further assessment or treatment, they could opt for an in-person follow-up clinical visit. Highlights of the satisfaction survey Percentage of patients who require: • Air travel: 30% • Use of personal vehicle: 70% • Loss of work: 50% • Meals: 100% • Accommodations: 100% Travel distance • Greater than 1000 kilometers: 80% • Between 500-1000 kilometers: 10% • Between 200-500 kilometers: 10% Cost • Estimated cost between $500 and $1500, depending on the distance travelled, meals, hotels, etc. Ease of use of technology • P atients who had little issues with the technology: 80% • Patients who engaged the help of a nurse or clerical staff during their visit: 20% Patient preference (telehealth vs in person) • P referred telehealth: 20% •D epended on the situation: 30% •W ould prefer face-to-face: 40% •H ad no preference: 10% Spring 2021
Wait times • Telehealth shortened wait times from 6-8 weeks to 2-4 weeks. Lymphedema needs addressed • 100% of patients felt their needs were met and would travel for further assessment/ treatment if needed • 1 00% of patients would use telehealth again Lymphedema management via distance: Is that possible? Conducting a lymphedema visit via telehealth was not without its challenges. As with all visits, positive patient identification was reconciled at the beginning of the visit. Because you are not “physically” calling in a patient, you need to ensure you have dialed the right telehealth room and have the right patient! Because so much of our work as lymphedema therapists relies on tactile and visual assessment, patient education about the visit and their role is important. Prior to the visit, a telephone call is placed to all patients. The purpose of the call is to highlight what was expected from the patient during the visit. Some patients were sent a measuring guide and tape in the mail with instructions on how to measure. Patients were given a schedule of when to measure and how to communicate the results during the visit. Some patients would email their measurements prior to the visits. Patients keep a log of use of compression and garment replacement, triggers, infections and risk reduction strategies. Patients are also asked to describe the texture of the skin to determine the degree of fibrosis if any. Patients are asked to wear compression garments to the visit. Teaching self manual lymphatic draingage is difficult but enhanced by written instructions and a demonstration via telehealth. Follow up remains the same as with any in-person visits: 3-6 months depending on the stability of the patient’s lymphedema. If a patient needs to make the trip to St. John’s for intensive lymphedema treatment, the process of planning begins during the telehealth visit. Electronic lymphedema documentation tools were developed for the healthcare’s electronic charting system. They are divided into upper extremity, lower extremity and head and neck population. The electronic assessSpring 2021
ment tool encompasses a quality of life section, incidence of cellulitis, loss of function, pain, visual assessment, measurements and the treatment plan. Because it is part of the patient’s electronic chart, documents can be viewed by our staff and at the cancer care peripheral sites across the island. The electronic documents have improved communication, data extraction and workload measurement that ultimately helps with making decisions about resources. Feedback from patients Overall, the feedback from patients was very positive. Many patients would have preferred a face-to-face visit but were happy to have an alternative. Comments included:
“ Distance and travel in the winter prevented me from seeing the lymphedema nurse. I was waiting months for the weather to improve to make the trip. This worked better for me.” “I was completely satisfied and my lymphedema needs were met. I did not incur any extra cost as I was seen in my own community.” “ My lymphedema education post mastectomy was done through telehealth. I felt I received all the information I needed and I did not need to travel eight hours to see the nurse.” “ I needed new compression garments. My nurse assessed me though telehealth and organized a prescription and saw a HHC fitter close to home.” “ I saw my nurse through telehealth and she felt I needed to come to St. John’s for treatment.” “ As a nurse in a hospital, telehealth provided our staff with information on how to help our palliative patient deal with lymphedema.” Impact and future direction The use of telehealth is not a new concept but few lymphedema programs in Canada offer connections through telehealth. Connections with lymphedema patients were enhanced by the implementation of this program. The need for an alternative to in-person clinical visits is greater now than ever. Face-to-face visits with our patients, as in most of the world, has been challenging during the global pandemic. The importance of a secure network deters us from using our personal devices to connect with
patients. However, because of COVID-19, organizations have improved ways of safely connecting virtually without the patient leaving their home through the patient’s personal computer or mobile device. Virtual care helps ensure social distancing and reduces the risk of COVID-19, taking the concept of telehealth to a different level. In conclusion, lymphedema management via telehealth provides an excellent avenue for lymphedema assessment and ongoing support. Patients can be seen in nearby telehealth facilities with minimal inconvenience. It alleviates the expense of travel, loss of work and time away from family. Patients’ needs are met and if clinically needed, the therapist can organize treatment plans and mobilize resources for patients close to home. The therapist can mail patients measuring guides, tapes, and literature and educate patients on how to detect changes in the skin and soft tissue and how to appropriately communicate their assessment through telehealth. Online resources, including the support available from the Lymphedema Association of Newfoundland and Labrador, are also presented to the patient to ensure connections. Whether your plan of care is education to teach risk reduction strategies, to develop a plan of care for proceeding with lymphedema treatment or to have a follow-up visit with a patient who has returned to their community post-surgery or radiation, or post lymphedema intensive phase, telehealth and virtual connection is a great option for delivering lymphedema services. LP
Whether you are a patient looking to share your experience, or a health professional with an idea for a topic based on relevant research, we would love to hear your idea and pass it on to our Editorial Board. Please contact us if you think you have an article idea you would consider writing and send to:
pathways@canadalymph.ca
L y m p h e d e m a p a t h w a y s . c a 13
Readers Survey Results
Pathways readers have spoken
Results from the 2020 survey By Catherine Andrew
A
s an ongoing effort to increase the value of Pathways for our readers, we invited feedback last fall. We were pleased with how many of you completed our readers’ survey and shared the ways that you use Pathways in your everyday lives. All survey respondents reported that they would recommend Pathways to another person, with 86% responding that they would be very likely to endorse the magazine. Respondents represented the diversity of our readers; from healthcare professionals to CHART 1
patients with varying types of lymphedema, to industry representatives. People living with lymphedema represented 57% of respondents, while health professionals accounted for 35% (Chart 1). Chart 2 shows the different fields represented among the health professionals who responded. Sixty-four percent (64%) of the responses were from people over the age of 50. Of those respondents who indicated their type of lymphedema, 17.5% have primary lymphedema and 43.7% have secondary lymphedema. This information will allow us to tailor the content in our magazine to better suit our audience, ensuring that readers of all types find the content that we publish relevant to them. Your favorite types of articles to read were Research Advances and Ask the Expert. We were happy to see that a majority of readers (64%) felt that the content breakdown of every issue is well balanced towards both patients and health care professionals.
There are a variety of ways in which our readers use Pathways. Many healthcare professionals reported that Pathways has helped them stay up to date on lymphedema research and news. The majority also reported having shared articles with patients and colleagues (Chart 3). Patients told us that one of the most popular ways that they use the magazine is to help with understanding of a certain issue, problem, or trend and that they have implemented an idea from Pathways into everyday life (Chart 4). Seventy-one percent (71%) of patients and 75% of health professionals report that they keep all of their Pathways issues for future use.
CHART 3
CHART 2
Catherine Andrew graduated with a Bachelor of Commerce from Dalhousie University in 2019. She is currently in the Publishing Certificate program at Ryerson University. Catherine works part time as an editorial intern for Pathways magazine.
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Spring 2021
We were surprised to see that only 50% of respondents were aware that Pathways is also offered as a digital magazine, with no extra cost to you! Although the majority of readers enjoy receiving their physical copy of the magazine, 15% of you were interested in reading the online version more often. If you are a subscriber and wish to receive an e-copy of the magazine to your inbox each time an issue is released, (ahead of the print version) please email digitalpathways@canadalymph.ca
CHART 4
Global reach Nearly 47% of respondents said that they find the content provided in Pathways to be more useful than the information on similar topics that they get from other sources. We also received a few comments as general feedback of how valuable Pathways is for them. We have published 36 issues of Pathways, all with the intention to increase education and awareness of lymphedema in Canada. Our publication now has readers all around the world including countries like Australia, The Netherlands, and South Korea.
We thank everyone who took the time to fill out this survey and provide insightful feedback. It is because of our amazing supporters, advertisers, and readers that we are able to continue bringing you issues of Pathways and we look forward to continuing the journey. LP A full report on the survey results is available on the references page at: www.lymphedemapathways.ca
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Ask The Experts
COVID and other questions COVID vaccine for lymphedema patients
Q
Eligibility for the COVID vaccine rollout in many regions is giving priority to the elderly and those living with high-risk chronic conditions. Since I have lymphedema, should I ask my family physician to sign a document that validates that I have lymphedema and am at greater risk for COVID-19, so I can get the vaccine sooner?
lymphedema, it is recommended that injections should be in the unaffected arm. If you have swelling or are at risk of developing lymphedema in both arms, it is recommended that both injections should be in either the thigh or buttocks (when possible) or in the less affected arm. If you have four-limb swelling, the least affected limb should be used.” Source: https://vascern.eu/home/vascernscovid19-recommendations/
A
The Canadian government public health website lists prioritized key populations for early COVID-19 immunization. These include those who are at high risk of severe illness and death from COVID-19. They list advanced age and other high-risk conditions (to be defined as evidence evolves). Source: https:// www.canada.ca/en/publichealth/services/ immunization/nationaladvisory-committeeon-immunization-naci/guidance-prioritizationinitial-doses-covid-19-vaccines.html. We certainly recommend that you consult with your family physician about your own individual situation. Many lymphedema patients also have other chronic conditions that need to be considered. However, lymphedema on its own does not put you at greater risk for lymphedema. The VASCERN statement regarding lymphedema and COVID-19 vaccination: “People with lymphedema do not generally have a problem with their immune system, as it is only in the region affected by lymphedema where the immune cells do not work properly. They work properly elsewhere in the body, providing you do not have a rare genetic form of lymphedema affecting all of the body, but if this applies to you, you should have already been informed of this. It is therefore safe, in terms of lymphedema, to have the COVID-19 vaccination and it should work in the same way as in the general population. However, for those with upper limb swelling or at risk of developing upper limb 16 L y m p h e d e m a p a t h w a y s . c a
Information about the thigh as an alternative injection site can be found in small print in the lower right corner (page 1) of both the Pfizer and Moderna vaccine guidelines.
_______________________________ Self-care for managing lympedema
Q
I am 71 years old and have primary lymphedema, which appeared for the first time when I was pregnant at the age of 18. My mother is 91 years old and has severe primary lymphedema. It was not until I was about 45 years old that I by accident was introduced to a doctor who knows firsthand about lymphedema. It was Dr. Johnson who got me on my first lymphapress and taught me about how important exercises, compression garments and diets are. I was one of the lucky ones that had IBS so I always was very careful what I ate (for example, no MSG, processed foods or salt). I have been able to control the swelling in my legs to a manageable point. I am very accident-prone and have had a few sprained ankles and falls, and know that it takes a very long time to heal. Any bruises I have on my legs just stay and never really go away. My real reason for this email is that I am getting quite a few red, rough patches on my legs; that if I scratch they hurt. I have been
trying different creams like Cerva and Aveeno and nothing seems to make them go away or lessen the spots. I know all the rules: no hot baths, lots of exercises, compression hose, no sun bathing. I worry that as I get older the swelling in my legs will get worse. Please advise. Thank you.
A
Thank you for your question to Pathways Ask The Expert. First, let me congratulate you on your excellent selfcare. You are paying attention to the key management strategies of meticulous skin care, compression therapy, exercise and diet. You have expressed concern about persistent discoloration from bruises and rough red patches and potential increased swelling as you age. As we age our skin changes and becomes thinner and more prone to injury. Minor trauma can lead to easy bruising and even though the bruise resolves we are often left with discoloration of the affected skin. It is therefore important to maintain good skin hygiene by using pH balanced soaps, regularly moisturizing with non-allergenic moisturizers and protecting your skin by wearing appropriate clothing, wearing your compression garment and replacing your compression garments at least every 4-6 months. It is important to wear protective footwear around the home. It is also important to keep your skin well hydrated by drinking adequate amounts of water. You should inspect feet after a shower or bath and dry well between your toes. This space is prone to fungal infections, which are one of the key causes of cellulitis for persons living with lymphedema. Spring 2021
David H. Keast MSc, MD, FCFP (LM) is the Medical Director or the Chronic Wound Management Clinic at the Parkwood Institute in London, Canada. He is Clinical Adjunct Professor of Family Medicine, Schulich School of Medicine and Dentistry, Western University (London) and Co-Chair of the Canadian Lymphedema Framework.
_______________________________
and RLD may be used similarly.” Although there are references online to reflexology as a treatment for breast cancer related lymphedema, there seems to be limited research material. What is your view?
A
Thank you for your query regarding the topic of reflexology as a treatment for lymphedema. Here are some important considerations for patients considering this treatment option.
2) A systematic review was published in 2020 that examined randomized and experimental studies looking at the benefit of reflexology in managing symptoms associated with breast cancer treatment. None of the included studies examined reflexology for lymphedema. For other symptoms, the authors concluded that high-level evidence is lacking to confirm the effectiveness of reflexology on breast cancer symptom management.4
Q
Spring 2021
Margie McNeely, PT, MSC.PT, PhD is a Professor in the Department of Physical Therapy, University of Alberta & Department of Oncology, Cross Cancer Institute. She is a Canadian Lymphedema Framework board member.
1) There have been no randomized clinical trials (RCT) looking at the benefit of reflexology as a treatment for lymphedema.1 There was one small-scale single group feasibility study done, with findings shared over two separate publications.2,3
Reflexology and lymphedema Our Association received an email query concerning Reflexology Lymph Drainage (RLD). I found the following reference to reflexology and lymphedema from the United Kingdom: “RLD is an award winning reflexology technique, which focuses on stimulating the lymphatic reflexes on the feet. The aim is to cause an effect on the lymphatic system in the body. It is a unique sequence that has been researched and developed by Sally Kay, while working in Cancer Care. The results appear to support the theory of reflexology... Lymphatic drainage massage (MLD) is used to treat conditions other than lymphedema,
For appropriate patients with the financial resources to pay for RLD, this “feel good” treatment is a low risk option that could be added to a recommended lymphedema management regimen for relaxation and stress relief. At this point in time, however, it cannot be recommended as a treatment for lymphedema.4
References 1. Wanchai A, Armer JM. Effects of weightlifting or resistance exercise on breast cancer-related lymphedema: A systematic review. International Journal of Nursing Sciences. 2019;6(1):92-8 2. Whatley J, Street R, Kay S. Experiences of breast cancer related lymphoedema and the use of reflexology for managing swelling: A qualitative study. Complement Ther Clin Pract. 2018;32:123-9 Image source: vedratherapies.com/reflexology-lymph-drainage
Regarding the risk of increased swelling as you age, it is important to work with your personal physician to identify and manage other medical conditions, which may be associated with chronic swelling including congestive heart failure, kidney or liver failure. Some medications are also associated with increased leg swelling. The rough red patches need to be examined by a physician experienced with dermatology and lymphedema. It is not appropriate to provide you with specific advice regarding these areas without a proper examination. Your e-mail address suggests that you are in the Pembroke area. The Lymphedema Association of Ontario may be able to suggest someone in your area or near to you in Ottawa.
3) There is no proven physiological mechanism of how this treatment would benefit lymphatic function in those with lymphedema.5 4) T here are conditions where RLD is not recommended.6 For other patients, the possible harms are the costs associated with treatment for an unproven therapy, and when RLD is used as an alternative to treatments that are known to be effective in managing lymphedema.
3. Whatley J, Street R, Kay S, Harris PE. Use of reflexology in managing secondary lymphoedema for patients affected by treatments for breast cancer: A feasibility study. Complement Ther Clin Pract. 2016;23:1-8 4. Wanchai A, Armer JM. A systematic review association of reflexology in managing symptoms and side effects of breast cancer treatment. Complement Ther Clin Pract. 2020;38:101074 5. McCullough JE, Liddle SD, Sinclair M, Close C, Hughes CM. The physiological and biochemical outcomes associated with a reflexology treatment: a systematic review. Evid Based Complement Alternat Med. 2014;2014:502123 6. Embong NH, Soh YC, Ming LC, Wong TW. Revisiting reflexology: Concept, evidence, current practice, and practitioner training. J Tradit Complement Med. 2015;5(4): 197-206. L y m p h e d e m a p a t h w a y s . c a 17
Personal Perspectives
Exercise and lymphedema
Dedication to moving lymphedema every day By Graham Snell
I have primary lymphedema. I was diagnosed in 2008 at the age of 30. My story is so like so many others with the same condition. I do consider myself lucky because my lymphedema did not develop from cancer.
S
o, although I do have this disease and will live with it for the rest of my life, I consider it a blessing it did not come from something worse. For all those reading this who did go through cancer treatments and came out on the other side with this disease, I applaud you for your strength and dedication. I do not want to write about the misdiagnosis in the beginning and the constant attempts to try and explain this disease to doctors. I do not want to write about the multiple cellulitis infections over the years and the constant vigilance against scratches and bug bites and the tube of Polysporin I carry with me as well as a bottle of antibiotics “just in case”. I can almost guarantee every reader of this article who lives with lymphedema has a similar story. Instead, I want to talk about movement, exercise and regular visits to my physiotherapist and the impact it has had on my condition. When I was originally diagnosed, I figured that was the end of the road for me. I inadvisably “Googled” pictures of lymphedema that had gone untreated and read horror stories of people who did not take care of themselves. This gave me a good kick to get moving. My research was not all negative, I read stories and saw pictures of people running marathons
and competing in major events. I learned that it was not the end to my quality of life and that I should not let it beat me down. When my specialist gave me the news, she said it will never get better, but the key would be to make sure it never gets worse. I took that advice to heart and began changes that day. Along with a strict compression regimen, I began moving; something I had not really done in years. I was an athlete as a kid, but a knee injury and surgery when I was fifteen put me down a path of little exercise and a sedentary lifestyle. This lymphedema diagnosis forced me to change that.
Graham Snell lives in Saskatoon, Saskatchewan. He has been married to Jodi, a teacher for almost 20 years and they have two grown children. Graham believes in family, living a healthy lifestyle and lymphedema advocacy. He sits on the Board of Directors for the Lymphedema Association of Saskatchewan and manages their social media pages.
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This is what works for me and I am by no means a medical professional, nor am I giving medical advice. Please consult your doctor or therapist before starting any kind of program. Some people have more conditions than just lymphedema and should consider that. This is just what works for me and what I believe in. I exercise every single day. I do not believe in days off. It is so important to move. Us “Lymphie’s” don’t have a choice. I am an early riser and get out of bed on weekdays at 4am to be in the gym by 5am. I go to a CrossFit gym, so everything is in classes that start at various hours throughout the day. Before you think how crazy I may be for doing this, I want to tell you that I have been at this for many years and it is just normal for me to have these hours. At this time of day, there are no commitments; no work or school and no activities to drive the kids to. It also means no excuses to not be able to put the work in. The intensity level of the workouts, combined with weight training, body weight movements and power lifting make for an all-around great body workout that has my lymphatic system moving well after the workout is done. At the age of 42, I am faster and stronger than I was at the age of 30 when I was diagnosed. In fact, my foot/leg looks so good during and after exercise that only few people know I have this disease. On days away from the gym, I go for a run, bike ride or even a brisk walk. When I said I exercise every day, I meant 4-5 of the days Spring 2021
at high intensity and the other days in “active recovery” which just means moving in some way. My dog keeps me moving since he is a fanatic for walks or runs at the dog park. A dog is another great motivator! In addition to exercise, I make every attempt to see Monique Marshall, my physiotherapist and certified lymphedema therapist, regularly. That was much easier pre-COVID, of course. I am ashamed to admit that I did not seek out a physiotherapist for lymphedema until a couple years ago after a bad cellulitis infection. Monique was recommended to me and she has changed my lymphatic life. Regular visits for Manual Lymph Drainage, along with proper fittings of compression garments have completely made my life better. She is also an incredible advocate for the treatment and care of this disease. So, please find the time to get up and move at some point in your day. It does not have to be high intensity. You do not need to run a marathon, climb a mountain, or do
“ This is what works for me and I am by no means a medical professional, nor am I giving medical advice. Please consult your doctor or therapist before starting any kind of program.”
CrossFit, but you should be moving to move that lymph! I also encourage you all to be active in the advocacy of our disease. Tell your story, post on social media, support the research and development of a cure, join your local lymphedema association and be genuinely supportive of everyone suffering. We are all in this together. I know that joining the Lymphedema Association of Saskatchewan has been a tremendous help for me. The support system that has come through them is amazing. LP
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Letters to the Editor...
Point-counterpoint: Debating Lipedema Response to “Therapy for Lipedema Incorporating New Clinical Guidelines.” Karen L. Herbst, MD, PhD, Total Lipedema Care, Los Angeles, CA, USA: Linda Anne Kahn, HHP, CMT, CLT-LANA, CHNC, Lymphatic Therapy Services, San Diego, CA, USA: Emily Iker, MD, Lymphedema Center, Santa Monica, CA, USA; Thomas Wright, MD, Lipedema Surgical Solutions, O’ Fallon, MS, USA: Chuck Ehrlich, MS, MBA, Lymph Notes, San Francisco, CA, USA: Jaime Schwartz, MD, FACS, Total Lipedema Care, Beverly Hills, CA, USA.
We read with interest the article by Guenter Klose in the Pathways Winter 2020/2021 edition of the magazine. While we agree with much of what Klose has written, we take issue with four concepts that we address here. First, Klose states that there is no edema in lipedema. While some may think the presence of edema requires visible free fluid in the interstitial space of tissue on ultrasound and the presence of pitting edema on clinical exam, this ignores the second location where fluid accumulates: in the interstitial space bound to glycosaminoglycans (GAGs) and proteoglycans. The correct definition of edema was published by Drs. Mortimer and Levick as “increased fluid in the interstitial space”.1 The interstitial space is a vibrant and complex part of the extracellular matrix. Within the interstitial space are fibers including collagen and elastin, a multitude of proteins, and complex structures called proteoglycans that are protein backbones to which GAGs are bound. GAGs are branches of repeating disaccharides that have a strong negative charge allowing them to bind sodium and water within the interstitial space. A GAG called hyaluronan binds proteoglycans together, participates in the hydrodynamics of the interstitial space and serves many other functions including immunomodulation. When lymphedema begins, hyaluronan, as a marker of GAGs, increases in the interstitial space to bind up additional fluid.2 If fluid continues to accumulate, hyaluronan stagnates in the interstitial space3 and fluid becomes visible by ultrasound as it overwhelms not only lymphatic vessel function but also the amount of proteoglycans the tissue can generate. Therefore, fluid in the interstitial space can be bound, free or both. In lipedema, or in early stages of lymphedema, prior to fluid becoming visible by ultrasound, fluid is primarily bound to GAGs/proteoglycans. For example, in Stage 0 lymphedema symptoms are present yet fluid is not visible by ultrasound and lymphatics appear normal by lymphangioscintigraphy, but dermal backflow of fluid (a sign of lymphedema) may be present on indocyanine green imaging.4 Would we say there is no lymphedema just because we cannot see fluid by ultrasound or feel it? In support of edema in lipedema as bound fluid, as fat tissue increases in the body, so do proteoglycans in the interstitial space.5 Women with lipedema also have more extracellular fluid, 20 L y m p h e d e m a p a t h w a y s . c a
and more sodium in the skin and tissue than women without lipedema.6, 7 Using the very powerful imaging modality, magnetic resonance lymphography, there is clearly free fluid present in lipedema tissue in later stages but also in individuals in earlier stages,8 which was clearly misstated by Erbacher and Bertsch.9 Lymphatic dysfunction has also been documented in early and late stages of lipedema10 and a new marker of lymphatic disease has been found for people with lipedema independent of the amount of fat tissue on the body.11 Edema is present in lipedema tissue; we just need to incorporate into our educational curriculums the pathophysiology of the interstitial space that has been known for decades.12 Articles by Drs. Erbacher and Bertsch, including the Myths and Facts series, as well as Klose, seek to de-legitimize manual lymphatic drainage (MLD) as treatment for lipedema based on a flawed understanding of lipedema physiology and contravening clinical evidence. MLD can help reduce volume and pain in lipedema when it includes deeper tissue techniques that are different from the techniques recommended for lymphedema. Secondly, the series of articles entitled Lipedema—Myths and Facts, Parts 1-5, by Bertsch and Erbacher cited by Klose are not a new paradigm for lipedema; instead, they begin to push lipedema back in time when it was viewed as “just obesity”. According to Klose, “An additional challenge in diagnosing and treating lipedema is that patients often have comorbidities such as obesity and subsequent obesity-associated lymphedema. Because there is significant overlap between these conditions, clear differentiation may be impossible, even for very experienced professionals.” The authors from the Foeldi Clinic in Germany primarily care for women with obesity and mistake women that have obesity for women that have lipedema.9 But not all women with lipedema are obese though the majority of women in the Foeldi Clinic may have obesity; the Foeldi Clinic population does not represent all women with lipedema. The Myths and Facts authors state that women with lipedema can lose lipedema fat after bariatric surgery. However, part of the definition of lipedema is fat that resists loss by diet, exercise and bariatric surgery.13-15 The Foeldi Clinic authors support the concept of lipohypertrophy, an increase in fat tissue that looks like lipedema but has no pain or edema. Perhaps Drs. Bertsch and Erbacher
mistake lipohypertrophy for lipedema. Experienced professionals can clearly diagnose and differentiate obesity from lipedema as we palpate the tissue and find nodules and other markers of fibrotic tissue. Delayed or inaccurate diagnosis of lipedema contributes to the physical and psychological pain and suffering experienced by many women. We can reduce this pain by pushing for earlier diagnosis and treatment, including screening younger women. In addition, readers should be aware that inappropriate language towards patients has been used in the articles by Bertsch and Erbacher including this statement when discussing weight gain with people with lipedema: “It is laborious and time-consuming to convince patients that they are misinformed and that there are other factors that lead to an increase in weight, and it is certainly not due to lipoedema.” This statement has no proof, suggests that the patient is always at fault, and closes the door to any further research into weight gain in association with the development of lipedema. The third issue is the statement “mental health issues were present before the onset of symptoms typically associated with lipedema and that these issues have an influence on the patient’s perception of pain”.9 The authors state that women with lipedema develop mental health issues prior to the symptoms of lipedema developing, especially pain.16 The idea that mental health diseases such as depression and anxiety can increase the perception of pain is not new. Reports of rates of depression and other mental health disorders in lipedema are not inconsistent with patients with other chronic pain disorders.17 We want to make it clear that women can develop lipedema tissue well before pain develops, and that this can result in the development of depression and anxiety as they see themselves different than their peers. We also want to be clear that mental health issues are not the sole source of pain in women with lipedema. However, mental health disorders can hinder the ability to cope with chronic pain.18 The fourth issue that we feel requires clarification is the following statement by Klose: “There is a common misperception that liposuction can eliminate lipedema and along with it, a patient’s emotional and psychological burdens. Although liposuction can reduce the size of a limb, there are grave risks…” There is no misconception that liposuction will eliminate lipedema. Liposuction removes diseased fat in Spring 2021
the areas of liposuction but the patient still has lipedema and has to continue appropriate exercise and diet. There are now studies that demonstrate the long-term benefits of liposuction not only on tissue reduction but improved quality of life.19-23 Mobility, function and pain are decreased after liposuction which has a positive effect on the patients psyche and also enables patients to participate in activities they may not have been able to do prior to liposuction. If liposuction is performed
by a skilled surgeon, there are no grave risks. We advise caution in reading the articles by Drs. Erbacher and Bertsch because they put at risk the progress we and others in this field have made towards improving our understanding of lipedema and the lives of women with lipedema. To simply state that lipedema is obesity that can be solved by treatment methods aimed solely at obesity, neglecting the etiology of lipedema and the fibrotic nature of the lipedema tissue which requires a
different treatment paradigm is not progress and certainly not a new paradigm. Find more here: Letter to the Editor regarding Lipoedema – myths and facts, Part 1 and Part 5. European Best Practice of Lipoedema – Summary of the European Lipoedema Forum consensus. Phlebologie 2020; 49: 31–49. A full set of references can be found at www.lymphedemapathways.ca
In Response to Herbst’s Letter to the Editors of Pathways Tobias Bertsch, MD, PhD Foeldi Clinic; European Center of Lymphology, Hinterzarten, Germany, Gabriele Erbacher, Clinical Psychologist, Foeldi Clinic; European Center of Lymphology, Hinterzarten, Germany; Guenter Klose, MLD/CDT CI, CLT-LANA, Klose Training & Consulting, Lafayette, Colorado, USA.
We are responding to the letter to the editors of Pathways from Karen Herbst and her colleagues (“the authors”). Their statements made, are only superficially directed to the contribution to Pathways made by Klose, but essentially are directed to the lead authors of the recently published International Consensus Document on Lipedema.1 Therefore, it is only appropriate that the following is a joint response by Bertsch, Erbacher and Klose. The statements made by Herbst and colleagues provide an opportunity to clarify essential aspects regarding lipedema. On one hand, readers of Pathways are able to see the perspective of Herbst and her colleagues. On the other hand, there is the International Consensus on Lipedema which was summarized by both Bertsch and Klose in the Fall and Winter issues of Pathways—and which is supported by renowned experts from 10 European countries, as well as from key opinion leaders from the U.S. and Australia.1,2 Below, we respond to and debunk the four disputed points put forth by the authors. 1) Unfortunately, the authors confuse three diseases - lymphedema, lipedema and obesity. Although many of our patients with lipedema additionally present with obesity3 and, in cases of severe obesity, obesity-related lymphedema4, it is essential to consider all three diseases individually, and with their own specific pathophysiology. In the first two paragraphs of their letter, Herbst and her colleagues correctly describe the situation we see in patients with lymphedema – but not in patients with lipedema. All the sources mentioned in these paragraphs refer to lymphedema – not
to lipedema. In the third paragraph, Herbst and colleagues write: “In support of edema in lipedema as bound fluid, as fat tissue increases on the body, so do proteoglycans in the interstitial space.” The reference the authors cite is NOT an article about lipedema; in fact, the term lipedema is not mentioned at all. That reference is an article about proteoglycans in obesity-induced dysfunction. In other words, none of the sources refer to lipedema. There is no scientific evidence for the claim that lipedema is marked by edema. If it were the case (hypothetically) that there was relevant edema in lipedema, and furthermore, that this mild edema would be the cause of the pain of our patients, as Herbst claims in other articles (e.g.5), then patients with lymphedema would also have pain. We all know that this is not the case. Furthermore, Herbst and colleagues write: “Using the very powerful imaging modality, magnetic resonance lymphography, there is clearly free fluid present in lipedema tissue…” However, the authors’ reference is an article by Cellina et al. In contrast to the claim of the Herbst group, only patients who suffered from lymphedema, in addition to their lipedema, showed—of course—free fluid in the tissues. Cellina et al., who investigated patients with lipedema by magnetic resonance lymphography, stated: “The fat tissue was homogeneous, without any signs of edema in patients with pure lipedema.” Moreover, Herbst and her colleagues claim: “Lymphatic dysfunction has also been documented in early and late stages of lipedema.” The authors reference an article by Forner-Cordero et al. Let us
quote the authors cited: “…because of a lack of a test of diagnostic certainty of lipedema, we may have included patients with lymphedema instead of lipedema.” Additionally, to this very essential scientific incertitude, the investigated patient population in the study by Forner-Cordero was old (up to 80 years of age). It is well established and documented that lymphatic function declines with age - even in healthy people.6 In addition, there is definitely no “new marker of lymphatic disease …for people with lipedema,” as Herbst and her colleagues claim. To debunk this, we refer to an article by Bertsch and Erbacher in which this issue is discussed in detail.7 To be clear, edema is defined as an “abnormal accumulation of fluid” in the tissue8. Neither clinical examination, nor imaging techniques like those mentioned above, could ever prove relevant edema in patients with pure lipedema.9,10 Reich-Schupke et al. wrote in their pioneering article in 2012: “The term ‘lipedema’ is actually misleading, since it is not an edema in a sense of accumulation of fluid in the tissue”.11 This was confirmed by the authors of the Dutch lipedema guidelines, in which they described lipedema as an “unfortunate term,” as it suggests fluid in the tissue where no fluid can be found.12 Finally, the European Lipedema Forum— an international group of high-ranking experts from various European countries—summarized in a highly-recognized consensus paper: “There is no [emphasized in the original] scientific evidence that lipedema is an ‘edema problem’”.2 To reiterate, there are patients who, in addition to
Thank you! To all of the family caregivers, front-line and essential workers and health professionals who are working hard to care for us, feed us canadianabilities.org and keep us all safe. Spring 2021
L y m p h e d e m a p a t h w a y s . c a 21
their lipedema, also suffer from lymphedema—e.g. primary or obesity-induced lymphedema. Others (not only patients with lipedema) experience orthostatic edema after long periods of standing or during the hot summer months. But there is no scientific evidence that lipedema is the cause of any relevant edema—an edema that necessitates treatment. 2) We reply to the following statement from Herbst and her colleagues: “The authors from the Foeldi Clinic in Germany primarily care for women with obesity.” The Foeldi Clinic in Germany is in fact the largest and most prestigious hospital for patients with lymphedema and lipedema from all over the world. The Foeldi Clinic is not an “obesity clinic”. Herbst and her colleagues continue: “But not all women with lipedema are obese though the majority of women in the Foeldi Clinic may have obesity; the Foeldi Clinic population does not represent all women with lipedema.” We agree that, not all; but the majority of patients with lipedema are obese (BMI > 30 kg/m2) and around 50% are even morbidly obese (BMI > 40 kg/m2).14,19 These are not only numbers from the Foeldi Clinic but also from several other European centers.3, 13-17 We found data by Karen Herbst herself in which she described that 76% of her patient population in the U.S. is obese.18 It is obvious that the patient population at the Foeldi Clinic is very representative. Furthermore; it is not “part of the definition of lipedema is fat that resists loss by diet, exercise and bariatric surgery.” Apart from the fact that there is no scientific basis for this claim, this statement by Herbst and her colleagues contradicts the daily clinical experience at the Foeldi Clinic since the 1970’s with these patients. Moreover, what is the pathophysiological concept behind this statement? When you lose weight, why should you lose weight everywhere but not in the legs? The references the authors used to support their statement are case studies by Bast (consisting of one patient) and Pouwels (consisting of two patients). At the same time, Herbst and her colleagues ignore the data that the Foeldi Clinic published in collaboration with the University of Freiburg, Germany last year. This data shows the tremendous impact of bariatric surgery on patients with lipedema—particularly on the volume of the legs.19
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Regarding the term “lipohypertrophy,” we, once again, refer to the publication by Bertsch and Erbacher in which we already explained the well-established European concept in response to another letter to the editor by the Herbst group.7 Regarding the “inappropriate language” that (at least in the view of the Herbst group) Bertsch and Erbacher have used in their articles when discussing weight gain “that the patient is always at fault,” this statement is surprising. In all their articles, Bertsch and Erbacher emphasize that obesity is a disease, a disease with multiple causes and definitely not a matter of fault.3,4 Moreover, Karen Herbst personally attended several lectures given by Bertsch in Dallas, Denver, and Chicago, during which he emphasized exactly this issue. To maintain that the opposite is true is really remarkable. 3) We are glad that Herbst and her colleagues accept the important role of mental health issues in patients who are diagnosed with lipedema, as well as the data by Erbacher et al.14 that indicates these mental health disorders usually exist prior to the development of lipedema symptoms. The claim of the authors that depression and anxiety could also be the result of disproportionate fat tissue in the legs is conceivable. Unfortunately, the authors didn’t provide any scientific evidence for this statement. 4) Herbst and her colleagues criticize Klose’s cautions about lipedema, claiming: “There is no misconception that liposuction will eliminate lipedema.” We recommend that readers take a look at the references the authors cited in support of their statement. Surgeons who perform liposuction write nearly all these sources mentioned by the authors themselves—and who earn a great deal of money with this procedure. Does anyone expect results other than those supporting liposuction from these surgeons? The only study mentioned by the authors that is not conducted by surgeons is a recent review directed at healthcare providers in Canada which came to a completely different result: “The findings have to be interpreted with caution, given that they are from single-arm, non-randomized studies based on patients’ self-assessment data collected using tools that have not been validated for the assessment of lipedema-related complaints”.20 The same
conclusions were obtained by Bertsch, Erbacher, and Torio21 as conveyed in Part 4 of their article series about the myths and facts about lipedema. To put it in a nutshell, studies regarding liposuction in patients with lipedema are poorly conducted, and the results are biased. Furthermore, the authors ignore the only prospective randomized study addressing this issue in which women with disproportional adiposetissue presentation demonstrated accumulation of abdominal adipose tissue following thigh liposuction to an extent that offset the initial body-fat loss in the thigh region.22 In our view, patients who are interested in liposuction must be fully informed of these important facts. In conclusion: In our contributions to Pathways, we didn’t express our individual opinions. Rather, we know that our statements are consistent with high-quality scientific studies and the International Consensus on Lipedema. Renowned Lymphology and Lipedema Experts from ten European countries, as well as experts from beyond Europe, support this consensus, which constitutes a paradigm shift in lipedema. The Foeldi Clinic in Germany, as the most renowned clinic in this field worldwide, already successfully treats patients with lipedema according to this new therapeutic concept. Nevertheless, we have to acknowledge that, as always when things change, there is resistance to these changes. Ultimately, however, this clinging to the “old lore” by Herbst and her colleagues must also be understood as a concern, a concern about change. But exactly this change, this paradigm shift, is urgently needed. As health professionals we have to focus on the real suffering of our patients with lipedema which is definitely not edema—but which is pain, weight gain, psychosocial issues, and a lack of self-acceptance, not least because of the current beauty ideal. In their final sentence Herbst and her colleagues referred to yet another Letter to the Editors of Phlebologie by her that was published in Phlebologie 2020. The response by Bertsch and Erbacher to that letter is our reference #7. LP A full set of references can be found at www.lymphedemapathways.ca
Spring 2021
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Helpful Suggestions
Hints and Tips Set reminders for exercise If you are working from a desk at home it can be easy to let the time get away from you. Set reminders on your phone or an alarm on your clock that reminds you to get up and do your exercises or move every hour. Protect your feet Always wear slippers, sandals or shoes at home when living with leg lymphedema. Walking around the house with bare feet may increase the risk of injury and a serious infection called cellulitis. If you also have diabetes and have lost sensation in your feet, professionally
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fitted footwear with orthotics is a must for wearing in the house. Adapt your workspace We’re all spending a lot more time at home lately, so we might as well make it comfortable. If you have lower-extremity lymphedema this could mean getting an elevated footrest for under your desk. If you have upper-extremity lymphedema you could get a wrist cushion for your keyboard and/or mouse so your arm is kept at an ergonomic position. Source: The Lymphie Life
Make resolutions any time of year Well-intentioned New Year’s resolutions made in January unfortunately subside for many people, by the middle of February. However eating healthy and staying fit are not just “nice to have” intentions when you have lymphedema, they are a necessity. A difference of even 5-10 pounds can significantly impact your lymphedema. Following Canada’s Food Guide suggestions of eating a healthy diet with 7-10 daily servings of fruit and vegetables plus getting the recommended 150 minutes of physical activity each week will keep you on track.
LP
Spring 2021
Research Advances
Did You Know?
Image: British Medical Journa (BMJ)
Objectives: To investigate the prevalence and risk factors of cellulitis in chronic leg edema, including lymphedema. Methods: A crosssectional study, including 40 sites in nine countries, 2014-2017. Adults with clinically proven unilateral or bilateral chronic edema (edema >3 months) of the lower leg were included. The main outcome measures were frequency and risk factors for cellulitis within the last 12 months. Results: Out of 7477 patients, 15.78% had cellulitis within the last 12 months, with a life-time prevalence of 37.47%. The following risk factors for cellulitis were identified by multivariable analysis: wounds [odds ratio (OR) 2.37, 95% confidence interval (CI) 2.03–2.78], morbid obesity (OR 1.51, CI 95% 1.27–1.80), obesity (OR 1.21, CI 95% 1.03–1.41), midline swelling (OR 1.32, CI 95% 1.04–1.66), male sex (OR 1.32, CI 95% 1.15–1.52) and diabetes (OR 1.27, CI 95% 1.08–1.49). Controlled swelling was associated with a reduced risk (OR 0.59, CI 95% 0.51–0.67). In a subgroup analysis, the risk increased with the stage of oedema [International Society of Lymphology (ISL), stage II OR 2.04, CI 95% 1.23–3.38, and stage III OR 4.88, CI 95% 2.77–8.56]. Conclusions: Cellulitis in chronic
Spring 2021
leg edema is a global problem. Several risk factors for cellulitis were identified, of which some are potentially preventable. Our findings suggest that edema control, is one of these.
was no correlation between the target and actual pressures. Only 3 participants had an actual MLB pressure within 5 mmHg of their target. Conclusions: The mean MLB pressure was 55.3 ± 4.1 mmHg, which was thought to be too high for the upper limb. Education about applying appropriate MLB pressures to the limbs is necessary.
Source: Br J Dermatol. 2021 Jan 6. Online ahead of print. PMID:33405247 | DOI:10.1111/bjd.19803
Compression pressure variability in bandaging
Source: Lymphat Res Biol. 2020 Dec 30. doi: 10.1089/lrb.2020.0083.
Even experienced LE therapists have difficulty applying multilayer bandaging (MLB) bandages correctly. This study’s aim was to demonstrate upper limb MLB pressure variability applied by LE therapists. Methods and Results: 24 LE therapists were asked to apply MLB to the healthy volunteer’s upper limb. They included licensed massage therapists, nurses, a judo therapist, an occupational therapist, and a medical doctor. 83.3% had clinical experience applying MLB. Compression pressure was measured with PicoPress at 5 cm proximal to the wrist, immediately after the application (phase 1) and after exercise (phase 2). The mean MLB pressure was 67.7 ± 5.0 mmHg in phase 1 and 55.3 ± 4.1 mmHg in phase 2, which were significantly different. There was a weak negative correlation between how long the therapist had been practicing MLB and MLB pressure. 70.8% expressed that they had a target pressure in mind when performing MLB. Among the 17 participants, there
Image: 3M
Cellulitis in chronic edema of the lower leg
Clinical pearls for providers
Lymphedema is classified as either primary or secondary, the latter resulting from trauma, chronic lymphatic system overload, or the sequelae of cancer treatments. In the present article, we focus on secondary cancer-related lymphedema (crl), a potential survivorship treatment-related effect. Treatments for breast, gynecologic, prostate, and head-and-neck cancers, and melanoma and other skin cancers are most frequently associated with crl. Given the lack of a universal definition and diagnostic criteria, the prevalence of crl is difficult to ascertain; current estimates suggest that more than 300,000 Canadians are affected by crl. Here, we present an overview of crl, divided into 5 subtopics: lymphedema risk factors; early identification and intervention; diagnosis and staging; management, with emphasis on the volume reduction and maintenance phases, plus patient support and education; and clinical pearls to help providers integrate knowledge about crl into their practice. LP Source: Curr Oncol. 2020 Dec;27(6):336-340. Epub 2020 Dec 1. PMID:33380866 | PMC:PMC7755442 | DOI:10.3747/co.27.7225
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Education Education
Canadian and International Events March 6, 2020 World Lymphedema Day. Contact your country or provincial lymphedema association to learn about local events and activities that you can join in for raising awareness for lymphedema and advancing care for millions of people living with this disease. May 14-16, 2021 – Gold Coast, Australia 2021 Australasian Lymphology Association. Join us for the 2021 ALA Symposium, where together we will be exploring new pathways. n www.lymphoedema.org.au May 28, 2021 – Virtual Wounds Canada offers three interactive virtual conferences in 2021 with the Limb Preservation Symposium being the first. ONE low registration fee for all events. n woundscanada2021.ca October 1-3, 2021 – Boston, Massachusetts National Lymphedema Network Conference. This year’s conference theme will be “A Mysterious Experience of Lymphology”. n www.lymphnet.org Nov 18-20, 2021 – Copenhagen, Denmark 10th International Lymphoedema Framework Conference. The 2021 Symposium will highlight innovative ideas and research. n www.lympho.org November 26-27, 2021 – Virtual The highly interactive, National Lymphedema Conference is hosted by the Canadian Lymphedema Framework, in collaboration with Wounds Canada. n www.canadalymph.ca
Letters to the Editor... __________ ______ __________ ______ __________ ______ __________ ______ __________ ______ __________ __ __ __________ __ __ __________ ______ ______ __ __ __ __________ __ __ __________ ____ ______ __________ __ __ __ __ __________ __________ ______ __ __ __ __ __ __________ __________ ____ ______ __ __ __ __ __________ __ __ __________ ______ ______ __ __ __ __ __ __ __ __________ __________ ______ __________ __________ ______ __________ ______ __________ ______ ______ __________ __________ ______ ______ ______ __________ __________ ______ __ __ __________ __ __________ ______ __ ______ __ __ __ __ __ __________ ____________ ______ __________ ______ __________ ______ ______ __________ __________ ______ __________ __ ______ ____ __ __ __ __ __ __________ __ ____ ________ ______ __________ __________ ______ ______ ______ __________ __________ ______ __________ ____ ______ __ __ __ __ __ __________ __________ __ ____ ______ __________ __________ ______ ______ ______ __________ __________ ______ __________ __________ ______ ______ __________ __________ ______ ____ __ __ __ __________ __ __ __ __ __________ ______ ______ ______ __ __ __ __________ __________ __ ______ __________ __________ ______ __________ __________ __ ______ ______ __________ ______ ______ ____ __ __ ______ __ __ __________ __________ ____ __________ __________ ______ ______ __________ __________ __ ______ __________ __ __ ______ ______ ________________ ______ __________ __________ ______ __ __________ __ __________ ______ ________ __ __ __ __ __________ ____ ____ ____ ____ __ ______ __ __ __ __ __ __ __ __________ __________ __ ____ ______ __________ __________ ______ __________ ____ ______ __________ ______ ____ ______ ____ _____ ______ ____
ur to be solute hono What an ab in your ry o are my st sh to d e sk a proud to I would be magazine. ways. ory in Path have my st my favourite It’s one of for Thank you magazines! day. making my ell, Graham Sn an Saskatchew , Saskatoon
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issues. on 36 e. Please s n o ti find ou tula urc r reque permiss Congra onderful reso st for re ion for w a p is ri t w n a the t Le articles Wh Moore by Mari exercise annon ze Ibrah h Angela S io r im and Yung. W , Onta ea distribu Toronto te lamin re planning to ate and fitt ers in th d copies to C LT e provin March ce durin s 2021 A g warene This sa Excellent Jo ss mon nitiz th. urnal! as a low able copy can Dorit Tidha be used contact r activity COVID, Beersheba during for thos , Israel e who a lymphe lr eady se dema p e atients review th and can e exerc ises wit Angela h them Dunphy . We would love to Preside nt, hear from you... Lymphe dema A ssociati Newfou If you would like to drop us a o n ndland and Lab of line, please do so at: rador
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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.
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CANADIAN LYMPHEDEMA FRAMEWORK
Congratulatio ns; well don e on the production & publicatio n of the 35th edition of … “Canad a’s Lymphedem a Magazine” . As a longtime advoca te for “the ca use” … a longer-tim e primar y L E af flictee, & a supporte r since day one of the CLF & its si gnature mag azine ef forts, I encourage continuation of Pathways Stephen Kel ! land Ottawa, Can ada
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