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Canada’s Lymphedema Magazine
Empowering patients and professionals
Self-management model of care
Surgical treatment options
Should I stay or should I go?
W H A T ’ S I N S I D E … Ask the Expert I Lymphedema mobile apps I Preparing case reports I Benefits of yoga
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Here we go again……. t is hard to believe that I am writing this column for the fourth Editor’s Message of this magazine - having Spring, Summer and Fall 2012 already behind us. After an exciting Spring 2012 launch, Pathways has proven to be more successful than we could have imagined, with positive feedback received from our sponsors, advertisers, and you, our readers. Our readership has expanded significantly within the past eight months, with additional subscribers from the United States and as far away as Hong Kong, Singapore and Australia.
to roll up their sleeves and move our strategic plan forward, focusing on research, education, partnership development and fundraising. Because of the partnerships and networking we are developing, we are able to showcase the work of leading experts as contributors to this magazine. This issue’s feature article is by Janice Cormier, one of those experts, whose excellent review showcases the recent strides made in surgical techniques. Further research is needed, and procedures need to be refined before we see surgery become adopted as standards Keep sending your Letters to the of care, but I am confident Editor, submitting questions for we will see more options our experts, sharing hints and tips. accessible in the future for Canadian lymphedema patients who have not responded to Funding for this magazine is made traditional lymphedema treatment. possible through our sponsors, advertisers Models of care for lymphedema across and subscribers. We especially thank our the globe are evolving in several ways. recurring sponsors who have generously An innovative approach by Princess provided another year of financial support. Margaret Cancer Centre involves a multiTheir funding allows the Canadian disciplinary team to address all aspects Lymphedema Framework (CLF) to continue of lymphedema care. Other hospitalits projects within the CLF Working Groups based lymphedema clinics should take structure. October 26 note of the concepts of the self-managewas the date of ment model this article outlines. our most recent One of our readers shares a personal meeting, when experience of going abroad to a specialized 25 hard working lymphedema clinic for treatment. For participants from many years, central European countries across Canada met have been far ahead in their knowledge, again in Toronto treatment and coverage of lymphedema care. In fact, some countries even fully cover three weeks of in-patient care for their citizens. This is merely a dream for most of us in Canada. We encourage Canadian health professionals to share their knowledge and expertise. Dr. Anna Towers Anna Kennedy
guides those who are just venturing out for the first time or those who want to refine their case studies and presentations. Further practice will give you the confidence to write articles for this magazine and other publications, organize hospital Grand Rounds to educate surgeons and physicians about lymphedema and lead informative workshops for patients and health professionals in your community. Some promising research from Roanne Thomas and her research team is presented, which shows the impact yoga can have on lymphedema—specifically on how people living with it are feeling better about themselves and coping with lymphedema. Your questions are answered in this issue by Dr. David Keast, a recognized expert in infections and wound care. He reminds us that skin care is an important element of daily management for lymphedema patients who are at risk for cellulitis. We would love to hear from you. Keep sending your Letters to the Editor, submitting questions for our experts, sharing hints and tips and consider contributing an article for publication in Pathways. This is your magazine. We want to hear from you! LP Ly m p h e d e m a p a t h w a y s . c a
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Pathways Empowering patients and professionals
Winter 2013 ■ Volume 2 Issue 1
Publisher Pathways is published four times per year by BCS Communications on behalf of the Canadian Lymphedema Framework (CLF) and its provincial affiliates. Editorial Board David Keast MD FCFP Winkle Kwan MD FRCPC Martina Reddick RN CDT Roanne Thomas PhD Anna Towers MD FCFP Lucette Wesley CIM Janice Yurick PT
The Contemporary Surgical Treatment of Lymphedema A popular topic for discussion
Surgical interventions offer some promise for patients unresponsive to traditional treatments alone, however further research is required.
Writing Case Reports and Presentations A skill that requires practice
Practical guidelines for preparing case reports and presentations that are vital in day-to-day work for health professionals.
Model of a Lymphedema Self-Management Clinic Princess Margaret Cancer Centre Canada’s largest comprehensive cancer centre promotes self-management of lymphedema in their survivorship program.
Editor Anna Kennedy Editorial Assistant Shannon Moore Advertising and Submissions We welcome your ideas, contributions, letters and ad copy. All material is subject to Editorial Board approval and inclusion does not constitute an endorsement nor reflection of the views and opinions of the CLF and its Editorial Board. Contents may not be reproduced without written permission of the Canadian Lymphedema Framework. Subscription Rates (1 year) Canada–$25. ■ International–$50. Single copies and back issues–$7. Subscriptions/return mail to Canadian Lymphedema Framework 4161 Dundas Street West, 1st Floor Toronto, Ontario M8X 1Y2 Telephone: 416-410-2250 Email: email@example.com www.canadalymph.ca
Lymph Science Advocacy Program Patients are learning the fundamentals
A unique program for fostering and mentoring patient advocates.
Ask the Expert Minimizing recurring infections and special considerations for wound care
Dr. David Keast answers your questions about cellulitis and explains why chronic wounds are a risk factor for lymphedema.
Exploring the Benefits of Yoga for Lymphedema after Breast Cancer A promising complimentary therapy
Research documents the change in women’s accounts of their well-being.
Cover Photo: BSN Medical Some photos in this issue are courtesy of D.Tidhar, PMCC, NLN, D.Keast, AquaJogger, Peninsula, ALFP, and LymphTracker
Canadian Publications Mail Agreement 40065546 ISSN 1929-1418 Printed in Canada
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Should I Stay or Should I Go? Patient perspective
Weighing the options of seeking specialized treatment abroad.
22 Winter 2013
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The Contemporary Surgical Treatment of Lymphedema
A popular topic for discussion By Janice Cormier and Kate Cromwell
he surgical treatment of lymphedema has become a popular topic for discussion among both patients and healthcare providers. While surgical interventions offer promise for patients with lymphedema that is unresponsive to traditional treatments, such as Complete Decongestive Therapy (CDT), patients often fail to realize that the surgical treatment rarely provides a cure and most patients must continue with compression garments for the rest of their lives. Each surgical procedure has been documented to have associated benefits and risks, and the range of volume reduction reported with each type of procedure varies widely in the literature. As reported in the International Lymphoedema Frameworkâ€™s recently released position document, the American Lymphedema Framework Project (ALFP) conducted a systematic review of 11 major medical indices of the peer-reviewed literature on the surgical treatment of
lymphedema, which summarized the reported risks and benefits, as well as the post-treatment measurements, techniques and associated volume reduction (Table 1). Various types of tissue, including omentum, muscle flaps, and lymph nodes, have been used to try to enhance lymphatic drainage.
The surgical treatment of lymphedema which can broadly be divided into four broad categories of procedures including excisional, liposuction, lymphatic reconstruction and tissue transfer, has become a popular topic for discussion. Excisional procedures The most widely reported techniques harvest healthy lymph nodes from a nonlymphedematous region and transplant them into the region of swelling. An update to the systematic review identified eight studies of tissue transfer with reported volume reduction of 81 percent to an increase of limb volume of 13 percent following surgery. In a recent study, in which donor site limb function was examined using lymphoscintigraphy and limb circumference measurements, the
Janice N. Cormier, MD, MPH, FACS is a Professor in the Department of Surgical Oncology at the University of Texas MD Anderson Cancer Center. Dr. Cormierâ€™s combined expertise in clinical oncology, lymphedema, and outcomes research are internationally recognized. Kate D. Cromwell, MS provides research support to Dr. Cormier at the University of Texas MD Anderson Cancer Center.
investigators reported that 60 percent of patients had demonstrable changes in their lymphatic function at the site of tissue harvest, but none had manifested changes in limb circumference during the follow-up period (range: 8-56 months). Five lymph node transplant procedures are
still under investigation, and similar to other surgical treatments for lymphedema, have not been studied in randomized controlled studies with other surgical or non-surgical (CDT) treatments for lymphedema. Potential complications for lymph node transplant procedures include lymphedema at the donor site and recurrent lymphedema of the affected site. Excisional or debulking surgical options are the most extensive lymphedema surgical option. First described in 1918 by Walter Sistrunk, these operations remove the bulk of subcutaneous tissue and skin in the enlarged limbs with subsequent skin grafting of large areas. More recently the procedures have evolved to spare skin flaps on the lymphedematous limb in order to maintain blood flow to reduce the area of exposed tissue and promote healing.
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Summary of the Surgical Treatment of Lymphedema Type of Procedure Excision
No. Studies 10
No. Range in Patients Reduction (%) 285 16-21
18 - 118
Lymphatic Reconstruction Tissue Transfer
2 - 56
13% increase to 81% decrease
A total of 10 peer-reviewed publications on excisional procedures reported postsurgical limb volume reduction to be between 16-21 percent.1 A number of post-operative complications have been documented following debulking procedures including infection, delayed wound healing, deep vein thrombosis, poor cosmetic appearance, destruction of remaining lymphatics, loss of limb function, and recurrence of swelling. Liposuction While considered a specific type of debulking, liposuction has also been used to reduce limb volume in patients with chronic lymphedema of the upper and lower extremity. The contemporary technique for liposuction was pioneered in Sweden by Dr. Brorson.2 Patients who are candidates for liposuction are first treated with CDT until there is no evidence of pitting edema. Liposuction is performed by making 15-20 small incisions and removing subcutaneous fat. At the conclusion of the operation, custom compression garments, measured preoperatively to fit the non-affected limb, are applied as a dressing and then changed postoperatively and replaced every three months. A total of seven articles were included in the systematic review which reported limb volume reduction of 18-118 percent. The morbidity associated with liposuction includes bleeding, infection, skin loss, and paresthesias (burning or numbness of the skin). Brorson and colleagues emphasize that following liposuction, patients are
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Measurement Techniques Circumference, volumetry, subjective Circumference, water displacement Circumference, water displacement Circumference, water displacement
expected to continue wearing compression garments for the rest of their lives. Lymphatic reconstruction Lymphatic reconstruction occurs when new connections are created between the damaged lymphatics and other lymphatic channels. The goal of the surgery is to create new connections which allow for
While surgical interventions offer promise for some patients with lymphedema, the surgical treatment rarely provides a cure and most patients continue with compression garments for the rest of their lives. the drainage of lymphatic fluid into the lymphatic system. The most commonly used technique for lymphatic reconstruction is lymphatico-venular bypass which creates microsurgical (0.8mm) connections from normal or dilated lymphatic channels to veins.3 These surgical techniques are highly specialized, require training in microvascular surgery and are most commonly performed by physicians trained in plastic surgery. A total of nine studies were identified which reported on the use of lymphatic reconstruction with a resultant range of volume reduction of 2-52 percent. The
associated complications included early failure (occlusion/scarring) of the connections and recurrence of lymphedema. More recently lymphatic imaging with indocyanine green dye has been used in conjunction with this procedure to assist with the visualization of lymphatic channels. A study has recently been published by Boccardo et al., in which lymphaticovenular bypasses were created at the time of axillary node dissection for the treatment of breast cancer to try to prevent the onset of lymphedema.4 Tissue transfer Various types of tissue, including omentum, muscle flaps, and lymph nodes, have been used to try to enhance lymphatic drainage. The most widely reported techniques harvest healthy lymph nodes from a non-lymphedematous region and transplant them into the region of swelling. An update to the systematic review identified eight studies of tissue transfer with reported volume reduction of 81 percent to an increase of limb volume of 13 percent following surgery. In a recent study, in which donor site limb function was examined using lymphoscintigraphy and limb circumference measurements, the investigators reported that 60 percent of patients had demonstrable changes in their lymphatic function at the site of tissue harvest, but none had manifested changes in limb circumference during the follow-up period (range: 8-56 months).5 Lymph node transplant procedures are still under investigation, and similar to other surgical treatments for lymphedema, have not been studied in randomized controlled studies with other surgical or non-surgical (CDT) treatments for lymphedema. Potential complications for lymph node transplant procedures include lymphedema at the donor site and recurrent lymphedema of the affected site.
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Discussion In summary, a number of surgical procedures have been proposed for the surgical treatment of lymphedema. Many of these surgical procedures have demonstrated promising results in select groups of patients; the majority of studies have reported a significant reduction in limb volume. Few studies have reported on the incidence of
associated complications. Ongoing use of compression garments is generally recommended following the surgical treatment of lymphedema. The efficacy of these surgical procedures has not been examined in the context of randomized controlled trials and the long-term results have not been examined in large cohorts of patients. There is significant variability in the volume
reduction reported and aside from liposuction, the optimal patient populations for each of the procedures have not been defined. The surgical treatment of lymphedema is likely to be most successful if integrated into a comprehensive lymphedema care program which includes traditional treatment. LP Editor’s Note: Surgical procedures for lymphedema are evolving in various parts of Canada with many centres just beginning start up programs. The assessment and outcomes of these procedures are important and trials may be necessary before they become adopted as standards of care. Accessibility is limited to 1) local expertise and 2) eligibility on a case-by-case basis, with strict criteria for patient selection. References 1. Cormier JN, Askew RL, Mungovan KS, Xing Y, Ross MI, Armer JM. Lymphedema beyond breast cancer: a systematic review and meta-analysis of cancer-related secondary lymphedema. Cancer. Nov 15 2010; 116(22):5138-5149. 2. Brorson H. Liposuction gives complete reduction of chronic large arm lymphedema after breast cancer. Acta Oncol. 2000; 39(3):407-420.
Lymphedema Lymphedema — Post-Surgical Post-Surgic al EEdema dema — Sports Injur Injuryy Therap Therapyy &ŽƌƌĞůŝĞĨ͕ƐŝŵƉůǇƐŶŝƉĂůŽŶŐƚŚĞĚŽƩĞĚůŝŶĞƐ͕ƉůĂĐĞ ŐĂƌŵĞŶƚΘƚƵƌŶƚĂďƐ͘͘͘ŽƌǇŽƵĐĂŶŐŝǀĞƵƐĂĐĂůů͊ KƵƌ ŝŶŶŽǀĂƟǀĞ ĐĂƌĞ ƉƌŽĚƵĐƚƐ ŚĞůƉ ƌĞĚƵĐĞ ƐǁĞůůŝŶŐ Θ ƉƌŽǀŝĚĞ ƌĞůŝĞĨ ĨƌŽŵ ůǇŵƉŚĞĚĞŵĂ͕ ĂŝĚ ŝŶ ƉŽƐƚͲƐƵƌŐŝĐĂů ƌĞĐŽǀĞƌǇ Θ ƐƉŽƌƚƐ ŝŶũƵƌǇ ƚƌĂƵŵĂ ĨŽƌ Guys and Dolls. There ĂƌĞ :ŽsŝWĂŬ ƉƌŽĚƵĐƚƐ ĂǀĂŝůĂďůĞ ĨŽƌ ĞǀĞƌǇ ƉĂƌƚ ŽĨ ƚŚĞ ďŽĚǇ͘ tĞ ŝŶǀŝƚĞ dŚĞƌĂƉŝƐƚƐ ĂŶĚ DĞĚŝĐĂů ^ƵƉƉůǇ ŽŵƉĂŶŝĞƐ ƚŽ ƐĐŚĞĚƵůĞ Ă :ŽsŝWĂŬ ǀŝƌƚƵĂů ŝŶͲƐĞƌǀŝĐĞ ƚŽ ůĞĂƌŶ ĮƌƐƚͲŚĂŶĚ ĂďŽƵƚŽƵƌƉƌŽĚƵĐƚƐ͘ŽŶƚĂĐƚŽƵƌĂŶĂĚŝĂŶZĞƉƌĞƐĞŶƚĂƟǀĞ Ăƚнϭ;ϮϬϲͿϰϵϳͲϴϳϬϬŽƌĂŶĂĚĂΛũŽǀŝƉĂŬ͘ĐŽŵ͘
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3. Chang DW. Lymphaticovenular bypass for lymphedema management in breast cancer patients: a prospective study. Plastic and reconstructive surgery. Sep 2010; 126(3):752-758. 4. Boccardo FM, Casabona F, Friedman D, et al. Surgical prevention of arm lymphedema after breast cancer treatment. Annals of surgical oncology. Sep 2011; 18(9):2500-2505. 5. Viitanen TP, Maki MT, Seppanen MP, Suominen EA, Saaristo AM. Donor site lymphatic function after microvascular lymph node transfer. Plastic and reconstructive surgery. Aug 8 2012.
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Writing Lymphedema Case Reports and Presentations By Anna Towers
resenting cases in a clear, relevant
and concise manner is a skill that
requires practice. This article, based on lymphedema clinical experience, suggests some basic guidelines that have been adapted from traditional medical case report formats to better suit lymphedema practice.1,2
Objectives of Case Reports
Formats of case reports When one is first learning to present cases, the preparation process may seem timeconsuming. However, continuing practice using a good template, will eventually lead to improvement and less frustration. The report needs to be relevant and concise. The degree of detail depends on the context and the time available. Here is a suggested template for presenting the information which can
• To communicate with physicians or other health care professionals with specific questions • To report back to referring professionals following successful (or unsuccessful) therapy • To consult and collaborate with expert therapists or teachers regarding difficult cases • To educate health professionals or patients regarding lymphedema in continuing education forums • To educate lymphedema therapists regarding difficult and/or successful cases • To contribute to the scientific literature Case reports are vital in day-to-day work as well as in special teaching circumstances. The objective of the communication will determine the varying elements of the case presentation and the amount of detail required.
be modified and simplified according to the therapist’s objective. Introduction: Reason or purpose for the presentation or referral Patient demographics: Age, gender and occupation of patient Etiology: Cause, type of lymphedema - type and status of the cancer (if applicable): remission, recurrence, site of metastases Important and relevant historical medical and social information (review of patients medical record): • Medications list (if relevant) • History of the lymphedema: onset, site(s) affected, hand dominancy • Other symptoms (pain, range of motion or mobility problems) • Family and social history relevant to lymphedema care (family composition, housing, financial status) • Impact of lymphedema and other symptoms on function at home and at work
Anna Towers MD FCFP is the Clinical Director of the Lymphedema Program, McGill University Health Centre and Associate Professor, Departments of Family Medicine and Oncology, McGill University. She is also the Co-chair of the Canadian Lymphedema Framework.
Relevant physical findings and outcome measures: • Lymphedema site, stage and severity • Photos and volume measurement charts Treatments to date: • Lymphedema therapy received in the past, and results • Compression garment history • Exercise history • Present therapy and results List of problems, questions, or teaching points, as appropriate Communicating with physicians In clinical practice one often has questions for physicians about a particular patient. The enquiries usually take the form of letters or emails. These should be concise and simplified to the essentials as physicians often will have less than 20 seconds to quickly scan your written message.
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poor historians as far as their medical perambulations are concerned, and there may be no family members that can help provide information. The therapist may be concerned that there is a contraindication to therapy that has been overlooked. Another situation where more information may be required is during the course of the lymphedema therapy, if the therapist develops a concern. For example, the therapy may not be producing the expected
Example 1 Dear Dr. (Family Physician): Thank you for promptly reassessing this 55-year-old male factory worker regarding the etiology of his leg swelling. He has had bilateral leg edema for the past 18 months, left greater than right, presumed secondary to chronic venous insufficiency (CVI). He has also had left leg pain for the past four months. He tells me that a Doppler test was negative for thrombosis two months ago. He first came to see me three days ago, on your referral. We started compression bandaging treatments to the left leg but because of the pain in that leg he could not tolerate even low-compression bandaging. The left leg is 25% bigger than the right on volume measurements. He has skin changes and varicosities suggestive of chronic venous insufficiency bilaterally. My question: I am not clear on the etiology of left leg pain, as lymphedema is usually painless. I would be grateful if you would either reassess him or provide me with more information from the medical record about the cause of the pain and swelling in his left leg. You may reply on the form below. Many thanks. An efficient method may be to have the patient schedule an appointment with their physician as soon as possible. Have them hand deliver your letter and wait for a response. In letters to physicians, leave spaces, inviting
tomography scans, MRIs, lymphscintigraphy.) Q What is the cancer status? Is there cancer recurrence, or is it in remission? If the patient has metastatic cancer, where are the metastases? Q Are there other factors that might be complicating the chronic edema?
the physician to answer your questions on the same piece of paper or electronic form. Try to keep the entire communication brief and not longer than a half-page. Possible questions that the therapist might want to ask the physician are: Q What are all the factors or etiologies that account for this patientâ€™s edema? Q What are the results of tests or scans that have been done to date to clarify the etiologies? (Examples might be Doppler tests, computed
The most common reason for the communication is that the therapist needs more medical information. This could arise at the time of initial referral or during the course of lymphedema therapy. On the first visit, a referred patient may arrive with insufficient information for the initial database, either regarding the edema or any underlying medical problems (see Example 1). The referral note from the physician may be scant. Some patients may be
Dear Dr. (Oncologist): Thank you for reassessing this patient who presents with new symptoms. You originally referred me this 61-year-old female lawyer with a six-month history of right arm lymphedema. She was treated for cancer in her right breast five years ago. She told me that she is in remission from her cancer, according to your assessment four months ago. She first came to see me three months ago, at which time her right arm was 38% bigger than her left by volume. In spite of our combined best efforts with bandaging treatments over the last four weeks her arm is not reducing significantly. She also has a new 7/10 severity pain in her left upper back and shoulder as of last month. I would be grateful for your reassessment and advice. Many thanks.
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result (see Example 2), i.e. the edema is not reducing well and the therapist may be concerned that there may be a cancer recurrence, or that the lymphedema diagnosis needs to be reassessed. However, remember that cellulitis and deep venous thrombosis are medical emergencies and that you should not take excessive time to compose a complete and well-structured referral letter if you suspect these diagnoses! Using case reports at conferences Case reports for presentation at continuing education forums require more detailed information. However, presenters often have too much material. The time allotted for such presentations is rarely more than 10-15 minutes, including discussion time. Often sessions run late, cutting your actual time even further! Below are guidelines for preparing your material and tips regarding the actual presentation day. Preparing material for the presentation • Include only the essential facts; but be ready to answer any questions about your patient’s lymphedema. • Audiovisual slides should not be too crowded. To ensure visibility and understanding, include no more than 32 words per slide, using the largest font possible.
More words cannot be easily assimilated. • Good quality photographs, images and measurement graphs are helpful. Be sure to obtain written permission from the patient if you plan to use their photographs. • Allow one slide per minute of presentation, excluding photographs. • Begin by stating the reason that inspired you to present the case. Do you want to get advice about a difficult problem? Do you want to showcase a particularly successful new technique or product? Have you seen and treated a patient with a rare disorder? Questions or teaching points need to be clear. • State your purpose in your introduction. Then repeat your purpose and/or questions in your conclusion.
Presenting cases in a clear, relevant and concise manner is a skill that requires practice.
On the day of the presentation • Do what you can to feel comfortable and to have confidence on your side. • Arrive early to familiarize yourself with the presentation room setup. • Be prepared for the possibility that the audiovisual technology may not work. Have a printout of notes that you could use to present the case without using slides. • Speak slowly, facing the audience and remember to look at the participants every once in a while.
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• Project your voice, especially if there is no microphone. • Do not read your presentation; rather, use the notes on your slides to guide you. • If necessary, cut your presentation down to leave appropriate time for discussion. Case reports for publication Case reports for publication are merely a well-structured presentation but in a standard written form. Journals usually have their own suggested formats and guidelines for case presentations, including maximum word counts. Anywhere from one to three cases are usually presented. Once you have targeted a specific journal it is especially useful to review case reports that were previously
published in that particular publication, to get a better idea of their format. Once the case report is submitted the editors will have helpful suggestions for improving and enhancing the report, if necessary. Enjoy practising writing and presenting cases! Constant practice will make the process easier. If you have communication tips to add, or interesting patient case studies you wish to share with your fellow colleagues, please submit them to us for publication in Pathways magazine. LP
Case reports for publication are merely a well-structured presentation but in a standard written form.
References 1. https://depts.washington.edu/medclerk/ drupal/pages/Oral-Presentation-Guidelines 2. http://libraries.umdnj.edu/camlbweb/ patient/presentation.html
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A Model of a Lymphedema Self-Management Clinic
By Pamela Hammond, Sylvia Crowhurst, Stephanie Phan, Aleksandra Chafranskaia and Pamela Catton
ancer and cancer treatment can pose numerous challenges for patients and their families. Cancer-related lymphedema or chronic swelling usually occurs in the limbs or trunk but can occur in any area of the body where lymph nodes have been removed and/or radiated. It can have a profound impact on a patient’s life. The Cancer Survivorship Program at the Princess Margaret Cancer Centre, headed by Dr. Pamela Catton, is dedicated to minimizing the negative impact of cancer and its treatment, by providing patients and their families with the necessary skills, education and support they need throughout their cancer journey.
lymphedema secondary to treatment for gynecological cancer. The goal of the Lymphedema Clinic is to engage, facilitate and encourage patients living with lymphedema through self-management and self-care strategies while using Combined Decongestive Therapy (CDT)
The goal of the Lymphedema Clinic is to engage, facilitate and encourage patients living with lymphedema through selfmanagement and self-care strategies while using CDT principles and International Lymphoedema Framework best practices. The Lymphedema Clinic is part of the Cancer Survivorship Program and was opened in 2005 to bridge patient-identified gaps in lymphedema education, management and care. This clinic is funded by the Weekend to End Women’s Cancers and is accessible to all University Health Network out-patients at no cost with: 1) lymphedema in the upper extremity and upper body secondary to cancer treatment and/or 2)
principles and International Lymphoedema Framework best practices. The Survivorship Program adopted the integration of the chronic disease model and trans-disciplinary team practice. The trans-disciplinary team of health care professionals
Pamela Hammond RMT, CDT, MES; Sylvia Crowhurst RMT,CDT; Stephanie Phan, O.T Reg. (Ont.); Aleksandra Chafranskaia, PT, MHSc; Pamela Catton, MD, MHPE, FRCPC are members of the trans-disciplinary team at the Cancer Survivorship Program Lymphedema Clinic. Princess Margaret Cancer Centre is the largest comprehensive cancer centre in Canada and is devoted exclusively to patient-centered cancer care, research, treatment and education.
consists of nurses, occupational therapists, physiotherapists, social workers and CDT trained registered massage therapists. The clinical team provides assessment, education, support and hands-on-coaching to teach patients and their families the skills necessary to self-manage their lymphedema. Our trans-disciplinary team also helps patients and their families address the emotional, spiritual and psycho-social aspects of cancer relatedlymphedema and management through on-going education, and connection to support and services. The foundation of our teaching clinic is based on the models of chronic disease management, adult education and patient-centered care. We strive to improve our patients’ experience of living with lymphedema by improving their self-care abilities and supporting their choices for quality of life. To date well over 1,200 patients have been seen in the Lymphedema Clinic. Depending on the severity of their lymphedema, patients are followed on an as-needed, quarterly, semi-annual or annual basis. Patients must be referred by an oncologist and cleared for deep vein thrombosis and recurrence of cancer
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before they are seen in the Lymphedema Clinic. During their initial clinical consult patients are educated about all aspects of lymphedema and lymphedema management (anatomy, physiology, risks, risk management, signs and symptoms and treatment options) via an interactive, group PowerPoint presentation. This is immediately followed by a one-on-one comprehensive assessment by a nurse, physiotherapist or occupational therapist in which their medical, lymphedema, and bio-psycho-social history is taken. Lymphedematous tissue is assessed, circumference measurements are taken and volume percentage is calculated. Body mass index is also calculated. Depending on the area of the body affected, either their upper or lower extremity range of motion, function or strength is assessed. Patients also complete either a Disability of the Arm, Shoulder and Hand (DASH) Questionnaire or Lower Extremity Measurement Tools form. The patient and clinician then collaborate to design a personalized, lymphedema self-management program, which involves a series of teaching sessions, in skin care, decongestive exercises, compression bandages/ garments and lymphatic self-massage. During the initial assessment and individual coaching sessions, we follow the Combined Decongestive Therapy (CDT) cornerstones of care. The team reinforces the need for patients to be vigilant in caring for their skin in the areas affected or at risk of lymphedema.
During their initial clinical consult patients are educated about all aspects of lymphedema and lymphedema managementâ€”anatomy, physiology, risks, risk management, signs and symptoms and treatment options. We encourage our patients to stay physically active through a variety of exercises. All patients are taught simple decongestive exercises to promote lymphatic flow. These exercises were designed by the physiotherapist on our team. Teaching is done one-on-one and through a group skills refresher class during annual reviews. Healthy Steps program is offered on a weekly basis for patients. Patients also have the opportunity to participate in Gentle Yoga and Relaxation classes through Wellspring and Gildaâ€™s Club. One of the cornerstones of care for patients with lymphedema is compression. Compression may involve bandaging of the arm, hand or leg, for a determined period of time, followed by wearing a compression garment. Our clinicians factor in the volume of the limb and the ability of patient and/ or family member to do the bandaging when suggesting this option. If patients are unable to do the bandaging themselves a Community Care Access Centre (CCAC) nurse may be able to help. In order to address any potential difficulties, a series of follow-up sessions are made to support the patient and/or caregiver, addressing any questions or difficulties that may arise. Patients are asked to wear their bandages to these follow-up appointments to ensure they feel confident applying bandages and are applying them correctly. A compression garment (a sleeve, glove, gauntlet, vest or stocking) is recommended when the swelling stays the same for a period of time. The goal of the garment is to maintain the size of the swollen area. Lymphatic self-massage, (LSM) as taught at the Lymphedema Clinic, uses simplified but specific massage techniques based on Manual Lymphatic Drainage (MLD) principles. MLD is used to promote lymphatic drainage from areas of stasis and edema to functioning lymphatic vessels and nodes
for patients with lymphedema.1 Patients at the Lymphedema Clinic are taught lymphatic self-massage by a CDT trained massage therapist through individual and group hands-on teaching sessions. Patients are offered individual follow-up sessions with the therapist on an as-needed basis to review technical skills and address challenges or difficulties. The therapist can modify the techniques to accommodate patientâ€™s needs. The number of training sessions that patients require to learn lymphatic self massage varies but from our clinical experience most patients state they feel confident performing LSM after two to four training sessions. Patients are advised to perform the massage every day for at least 10 minutes to help self-manage their lymphedema. Patients who have difficulty performing lymphatic selfmassage because of physical barriers, such as pain or inability to reach swollen tissue, can be referred to either the Function and Mobility Clinic, Toronto Rehab Institute (TRI) Musculoskeletal Program, Health, Exercise, Active Living, and Therapeutic Lifestyle program or one of our community partners to help improve shoulder range of motion. These patients are also encouraged to bring a friend or family member to the teaching session so they can learn and assist their loved ones with lymphatic massage.
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Lymphedema and lymphedema management are often poorly understood by many patients and caregivers alike, therefore reinforcement of knowledge is a very important part of our program. Patients receive educational handouts about the lymphatic system, cancer-related lymphedema (symptoms, risks and triggers), and lymphedema management (healthy weight, skin care, exercise, compression and lymphatic self-massage). Patients who come to the lymphedema clinic for their annual re-assessment are offered a skills refresher group class where lymphatic self-massage and decongestive exercises are reviewed and performed. This forum also provides patients with the opportunity to network and connect with other lymphedema patients and share experiences of what has helped in self-management.
The management of lymphedema is a lifelong commitment as it is a chronic condition. A key objective for the Lymphedema Clinic is to improve patient’s skills and adherence to self-management, in order to prevent negative consequences of lymphedema. This is done through engaging and empowering patients, providing practice opportunities for skills training, supporting behaviour change through follow-up and transitioning into the community. LP References 1. Kilgman L, Wong RK, Johnston M, Laetsch NS. The treatment of lymphedema related breast cancer: a systematic review and evidence summary. Support Care Centre 2004; 12:421-31. We thank Priyanka Hansraj and Lesley Hawkins for their contributions to this article.
CLF Strategic Planning T
he 2009-2012 Strategic Plan for the Canadian Lymphedema Framework includes three initial areas of focus – Research, Education and Partnership Development/ Fundraising. This focus dictated the structure of our Working Groups who have been meeting since 2010. The following is a capture of their individual activities and plans for the future, as planned in the CLF Working Group meetings, held in Toronto on October 26, 2012.
Research Working Group Research needs identified include: • Development of practical, low-cost measurement tools • Identification of chronic lymphedema patient population characteristics • Problem of transition from institutions acute (intensive phase) care to self management at home • Publications that can help influence public policy The group identified ways to facilitate discussion among researchers through symposiums, poster sessions at provincial association conferences, research websites and the use of social media. Pathways will also continue to be a tool to keep
Lymphedema Educational Profiles across Canada helped focus their developing objectives: • Education of Health Professionals – postgraduate specialization certification • Nursing Education – developing nursing modules for community nurses. The first step is identifying the needs through focus groups and surveys • Guidelines or Standards for Lymphedema Specialist Training in Canada – reviewing LANA existing guidelines and unifying standards across North America • Patient Education – creating a repository of information on risk reduction guidelines.
website with a professional, dedicated CLF site by Spring 2013 • Communications – regular electronic news, to keep stakeholders informed of CLF activities • Fundraising campaign – providing a fundraising kit for all CLF Working Group members to personally approach potential donors • Awareness activities include editorials and ad insertions in the National Post and Toronto Star as well as a 5-second commercial on flashing overhead banners in Toronto Go Transit stations during the month of December.
Canadians up-to-date on research.
Partnership Development/Fundraising Working Group Key objectives for this group are: • Website – to replace the temporary
Conclusion After a successful and fruitful meeting, the group participants felt re-energized for the work ahead. LP
Education Working Group The group’s SWOT analysis of
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Passionate Patient Advocates
he Lymph Science Advocacy Program (LSAP), organized by the National Lymphedema Network (NLN), engages and motivates patients and caregivers to action on issues of treatment and research of lymphedema. It provides a unique opportunity for patients to become “experts”, by being introduced to the basic science of the lymphatic system and clinical and diagnostic research of patients living with lymphedema and related disorders. The goals of the LSAP program are for improved and increased dialogue between researchers and advocates, to keep research focused on patient issues, not just the scientific questions, and to train
advocates who can represent the patients’ experiences in the research process. The program components include training through pre-conference webinars, mentorship at NLN conference round table discussions with leading lymphedema experts and individualized action plans for local advocacy initiatives. Piloted at the 2002 NLN conference, there are now 30 alumni including nine LSAP graduates at the recent 10th NLN conference held in Dallas on September 2012. Many graduates are now involved in patient advocacy groups, leading reimbursement initiatives, initiating lymphedema educational websites or patient associations. They continue to come back to each NLN conference to grow their knowledge and expand their network.
Four Canadian LSAP alumni include Cathy McPherson, Kim Avanthay, Janice Goldberg, and Anna Kennedy. Applicants are nominated or selfnominated and participation is open to patients affected with lymphedema as well as advocates, caregivers, and family members or those whose lives have been affected by lymphedema. www.lymphnet.org. LP
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Ask the Expert
Minimizing Recurring Infections Special Considerations for Wound Care By David Keast
I seem to get recurrent cellulitis infections and don’t know what
I can do to minimize the frequency and severity of these infections.
Cellulitis or erysipelas is a common complication of lymphedema. It is
an infection of the skin and tissues below the skin. Normal skin acts as an effective barrier against invasion of bacteria, viruses or fungi. The chronic swelling of lymphedema affects the ability of the skin to protect against this invasion. Bacteria may enter through small cracks, areas of dermatitis or fungal infection. It is most important that you control the swelling of the affected limb through your usual treatment strategies and consistent use of compression garments. The skin must be maintained soft and supple through effective cleansing with mild pH balanced cleansers. After cleansing, the skin must be completely dried including between fingers and toes and in crevices or skin folds. A non-scented hypoallergenic moisturizer may then be applied. Seek medical attention for fungal infections and areas of dermatitis. Use appropriate clothing to protect your skin including gloves if washing dishes or working in the garden. Minor cuts and scrapes should be cleaned immediately with lots of clean water, followed by the application of an
antibiotic cream, and then covered for protection. Finally you should maximize the ability of your body to fight infections with a healthy balanced diet and regular exercise. Despite your best efforts, you may still get one or more episodes of cellulitis per year. If you have more than two episodes per year, prophylactic daily antibiotics should be considered. The International Lymphoedema Framework Best Practice Document recommends low dose daily erythromycin or clindamycin for a period of two years. If there is no reoccurance, the antibiotics may be stopped but if cellulits reoccurs, lifelong prophylaxis should be considered. Finally you may wish to have an emergency supply of antibiotics to have when travelling away from home if recurrent cellulitis has been a problem.
What are the signs and
symptoms of infection?
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Blister-ing is sometimes seen. If you develop fever chills, headache or vomiting, these indicate a severe infection and require immediate medical attention in the nearest emergency department.
Can long standing wounds cause lymphedema?
This is a really good question. Anytime a wound occurs an inflam-
matory response occurs to initiate healing. This will be seen as swelling, warmth and redness caused by leaking of fluid, proteins and inflammatory substances into the tissue. In the area around the acute wound there will be lymph stasis. If healing
Symptoms of infection
may be variable. Some
episodes may onset very quickly in a matter of hours. In other instances symptoms may grumble along over several weeks. You may just feel unwell with no clear reason. Pain, redness,
occurs this resolves, but if the wound becomes chronic the area around the wound may develop a chronic inflammatory response. Ultimately this may overwhelm the ability of the lymphatics to manage this and lymphatic dysfunction may become permanent. This is particularly seen in people with chronic ulcers, many of whom develop lymphedema.
heat and swelling are the usual symptoms which alert you to the developing cellulitis. You may develop red streaks running up
your arm or leg (lymphangitis) or swollen
David Keast MD FCFP is the Medical Director of the Chronic Wound Management Clinic, St. Joseph’s Parkwood Hospital in London, Ontario. He is Clinical Adjunct Professor of Family Medicine, Schulich School of Medicine and Dentistry, Western University—Canada and is also a Co-Chair of the Canadian Lymphedema Framework.
lymph nodes in the groin or armpit.
If you would like to have a question answered by one of the health professionals on our ‘Ask the Expert’ team, please contact us via email:
email@example.com Be sure to put “Ask The Expert” in your subject line.
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Exploring the Benefits of Yoga for Lymphedema after Breast Cancer By Roanne Thomas
survivors who were experiencing pain, range of motion restrictions, and/or lymphedema. The women ranged in age from 51 to 66 years of age. The yoga program was a modified form of Iyengar â€“ a gentle type of yoga which was adapted to meet the requirements of the participants (e.g., sometimes props such as belts and blocks were used for poses). Our yoga instructor had over 18
Roanne Thomas PhD is a Canada Research Chair in Qualitative Health Research with Marginalized Populations in the School of Rehabilitation Sciences at the University of Ottawa. Her research focuses on the psychosocial impact of chronic illnesses, such as lymphedema.
he number of people practising yoga in North America continues to grow and it is one of the most widely practised forms of complementary healing. However, little research has been completed with people living with lymphedema. A key question is: What are the benefits, if any, of yoga for lymphedema? Our research team explored this question with 13 Saskatchewan breast cancer
I have become more accepting of my body.
years of teaching experience and had already designed programs for people with injuries. Each yoga session was about one hour long and was held once per week for eight weeks. While our team took measurements to note potential changes in swelling of participantsâ€™ arms and improvements in range of motion, disappointingly these statistics did not show great improvement over the course of the program. What did change dramatically were the womenâ€™s accounts of their well-being. These were
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I am more flexible, free, and peaceful.
One woman wrote in her journal “By 10pm, I was sound asleep, thoroughly relaxed. I credit the first yoga class…After the second class, I felt an even greater release in the muscles of the chest wall.” Interestingly, even though the yoga
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described through weekly journal entries and in-depth interviews. Some participants conveyed ideas about the influence of yoga on lymphedema symptoms. One woman said that as a result of the yoga, her arm felt more “normal” and that she “could do more things.” Another woman stated “I started the yoga breathing and the aching went away.” Many participants spoke of the benefits of yoga for improving posture. For example, one woman stated “I was very protective of my chest area after surgery…and then my chest, back and arm muscles learned this position. So, I have been re-teaching my chest, back and shoulder muscles to stretch and lengthen and hold my posture. And, it is working! Yeah!” Almost all of the participants said that they slept better and felt more relaxed after participating in the yoga program.
program was experienced as relaxing, the women also found it was energizing. One woman noted that after yoga, “I feel I want to be at work. I’m not tired and draggy and worn out as much.” Another participant said “It’s very refreshing and energizing.” Much more research into yoga for lymphedema is needed including further outcome measures. For instance, yoga has not been researched with men or longer programs and follow-ups are required. However, given the benefits described by our study participants themselves, yoga may be a promising complimentary therapy for those living with lymphedema. LP The research was funded by the Canadian Breast Cancer Research Alliance (CBCRA).
775,%87( 5,%87(& &$5(6,$ $5(6,$ Premium Premium C Custom-Made ustom-Made Nighttime Compression N ighttime C ompression
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Should I Stay
or Should I Go? By Vocem Innominatum Patiens
have congenital hereditary (primary) lymphedema of the lower body (core and legs). In 2001, my condition became significantly worse, most likely as the result of an overseas flight, without sufficient compression. Over the next eight years, I tried various types of treatment such as naturopathic and homeopathic remedies, non-prescribed compression, and Manual Lymphatic Drainage (MLD) sessions. Although I experienced varying degrees of success, none of these treatments were able to restrain the condition from its progressive, debilitating effect on my body. In fact, I suffered through many outbreaks of lymphorrhea and infections, a few of which required hospitalization.
The harsh reality was that the
Canadian experience so far was not meeting my treatment needs...
so I was off to Austria, with
a sense of measured optimism.
It was within this context that I sought out help in 2009, from a centre of considerable expertise in Austria. Even though health-care providers in Ontario had been sympathetic and somewhat helpful in the attention to my condition, the degree of specialized treatment that I required was apparently only available…overseas.
Lymphedema awareness and expertise still have a long way to go within the greater health-care community in Canada, while a few central European countries have longstanding awareness and familiarity with the condition and its complications. Staying in Canada would mean the continuing deterioration of my condition and my quality of life. The Austrian opportunity held the promise of successful care at a world renowned facility for lymphedema – the Wittlinger Therapiezentrum, in Walchsee. The only potential drawbacks would be expense (no certainty of private or government insurance coverage), and uncertainty of success in treatment. With proper planning on the expense issue, only the certainty of success remained in my mind – that issue was resolved matter-of-factly by the harsh reality that the Canadian experience so far was not meeting my treatment needs…so I was off to Austria, with a sense of measured optimism and my spouse for support.
Authors note VIP (Vocem Innominatum Patiens—Latin for "voice of unnamed patient") is someone with lymphedema, who wishes to remain anonymous.
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The following are some of the challenges I/we faced, followed by some of the benefits enjoyed. With this pro/con approach, the hope is that other patients in the same or similar position may make an informed choice of…should I stay or should I go? Challenges Austrian German is the business language of the Centre. English-speaking patients are in the minority, as the clientele is European, with most being native Austrians. The city of Walchsee has limited English-language services available; Proper-fitting garments are critical at the time of return air travel to Canada, so as not to undo any improvements achieved at the Centre; Researching Centre services before leaving Canada – whether for clothing needs, insurance receipt needs, VAT refund purposes, or other specific needs; The strict regime of scheduled activities (meals, treatments, exercise opportunities, etc.), which are in place by necessity (Austrian patients are covered by their insurance plans for specific regimes, which last three weeks.); and, Non-
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lymphedema friendly facilities are on site – one must resist the temptations to use the sauna and whirlpools. Benefits The facilities are comfortable, convenient and the staff is accommodating. They made a point of assigning dining seating arrangements with other English speaking patients, making for a more pleasant social experience. Communications and services are available in English both in the planning phase with the Centre, and in some reference material; The treatments are administered by fully qualified therapists, overseen by instructor physiotherapists, and in regular consultation with on-site medical staff. There are quantified weekly observation and measurements, plus a medical report at check-out providing details about improvement of patient’s general (overall) health and volume reduction of edema etc; The duration of the stay
(my case – four weeks) is on an in-patient basis, with some flexibility in schedules, offering freedom to get out and about in the resort Tyrolean village of Walchsee or for day trips to nearby attractions. Special dietary services and lymphedemaspecific exercise classes are offered, including water-based techniques, as are hands-on workshops for self-care needs such as bandaging. The setting of the Centre is very helpful to the exercise regime…there is a pool (indoors) and there are outstanding and peaceful hiking areas nearby. To fully address the sociological, psychological and physiological effects of lymphedema, great care and attention is evident for the whole of one’s stay at the Centre: from the convenience of getting there (taxi from Munich, Salzburg or Innsbruck), to the regular medical monitoring and well-orchestrated schedule of treatments while there, to the full report, prescription and garment-fitting/provision upon check-out…all of which are offered
with the goal of optimal success of one’s stay as the paramount factor. Outcomes The positive results I initially experienced as a result of my stay included a reduction in volume, increased mobility, restored selfimage, elimination of pain and discomfort, and the ability to again wear proper fitting clothes. I was very pleased with my results. For many patients, results are only sustainable for a few months, and many choose to venture to the clinic on an annual basis for the best results. However, as Hildegard Wittlinger once told me, “the ambiance of the Centre is tremendous for the path of being, doing and feeling better for those with lymphedema.” After a visit to Wittlingertherapiezentrum, you may feel like a renewed “VIP”, too. LP Disclosure: This article was unsolicited and the author was not paid by the Centre or provided with any incentives for this review.
Inpatient Lymphedema Treatment with Combined Decongestive Therapy and Manual Lymph Drainage according to the Dr. Vodder method. With the help of an optimized therapy approach, we want to improve your lasting well-being, not only at the clinic, but also when you return home. Hence, follow-up care is a priority for us.
Your individualized treatment package:
• Accommodation in a single-room with full board or special diet • Combined Decongestive Therapy including Manual Lymph Drainage according to the Dr. Vodder method • Edema gymnastics and aquarobics • Pneumatic compression, if prescribed • Ongoing medical supervision • And much more
• Holistic lymphedema management • Inpatient stay and efficient Lymphedema treatment • Education of your husband/wife how to treat/bandage you Global
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I N T E R N A T I O N A L
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Hints and Tips The power of water Water exercise has been shown to provide benefits to people living with lymphedema. If you can't find an aqua lymphatic program near you, you can simply walk in the water, wearing a floatation device. The AquaJogger buoyancy belt suspends you at shoulder level in deep water allowing you to breathe normally and move freely while performing a wide variety of water exercises. www.aquajogger.com Fashionistas take note Finally, the designers of medical compression garments understand that even people with moderate to severe lymphedema, who require the use of flat knit compression
garments like to look fashionable. No more ugly medical-looking, boring beige or sand colours. Check out the various advertisers in this magazine for refreshing choices in colour, texture and patterns in various compression levels of custom flat knit stockings. Alert - no needles please! It is important that patients with lymphedema or those at risk, have a mechanism to alert medical professionals of their condition during medical procedures such as injections, blood draws, IV insertion, blood pressure readings, etc. Donning a brightly coloured lymphedema alert band on their affected limb will alert technicians to the risk. Contact Peninsula Medical for your free alert band. www.lymphedema.com/alertband.htm LP
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Treat your body. Treat your spirit. Treat yourself. You deserve a compression garment that feels as good as it looks! LympheDIVAs provides either Class 1 or Class 2 medical compression in both sleeves and gauntlets — and we do it in something other than just boring beige. With over 25 patterns, 2 crystal additions and our Diva Tone line with 30 unique skin tones, LympheDIVAs works to provide you with medical compression that you would actually want to wear. All our garments are made in the USA with a state-of-theart breathable and moisture-wicking fabric with 360° stretch to decrease binding at the elbow. Say “Goodbye” to beige and slip into the comfort of LympheDIVAs!
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Did You Know? Mobile app finds therapists Look4LE is a mobile app, by the American Lymphedema Framework Project, to help find therapists in your area who are trained to treat lymphedema. The app currently features almost 1,000 LANA-certified therapists (including some Canadians) and the list is constantly growing with plans to add more therapists soon. You can find therapists using the directory, or by accessing the appâ€™s built-in map feature to search by location name, zip code, or your current location. Each therapist has a contact page where you can find phone,
street, web, and email addresses, view a map, get directions, and add the therapist to your system contacts. There are also a number of resources listed in the app with links to webpages and organizations. Look4LE is funded by the National Library of Medicine and is available for free on your iPhone or iPad in the App Store. You can find more information at www.alfp.org.
Limb volume calculator app LymphTrackerâ„¢ is the first-ever limb volume calculator app available on iPhone and iPad dedicated to the lymphedema patient. It allows patients to measure, follow and share their limb volumes via email. Patients use a tape measure to record measurements at home and get instant feedback on limb volume changes.
KL KLOSE OSE TRAINING ONLINE The education. T he leader in lymphedema lymphedema ym
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