president`s message - Lymphedema Association of Saskatchewan
Transcription
president`s message - Lymphedema Association of Saskatchewan
AUTUMN 2012 the BC Lymphedema Association insert PRESIDENT’S MESSAGE by Lucette Wesley, Burnaby, BC Since the last edition of Pathways, the BCLA Board has held a strategic planning session. It gave us the opportunity to look at where we have come from, celebrate our accomplishments, review and evaluate where we are now, and plan our direction for the next few years. Fatima Inglis, our VicePresident, announced at this meeting that she will be stepping down from the Board at the end of the summer. Although she will not be on the Board of the BCLA, she will still be actively involved in the lymphedema community and will focus on providing education to therapists and nurses within the public health care system. Fatima reports that “There is both an interest and a need to update and expand knowledge in the management of lymphedema. In June, a meeting was held attended by 13 therapists and nurses. The plan is to have IN THE FLOW - BCLA AUTUMN 2012 regular meetings and education sessions and workshops”. We are very sad to see Fatima leave the Board, but we know that her plans for the future will continue to work in tandem with our goals. Thank you, Fatima, for all the years you have dedicated to helping the BCLA achieve its goals. At the same time, she and Dr Elliott Weiss announced that a new lymphedema clinic at Providence Health Care will open in early 2013. The clinic will provide combined consultations from the Physical Medicine & Rehabilitation Specialist and physiotherapists. Services will include medical diagnosis, assessment, treatment recommendations and education. These are exciting changes for the lymphedema community in BC. As you all know, we are a volunteer Board and we need to be realistic about what we can accomplish. In reviewing our strategic plan, we identified that we need to strengthen our Board of Directors and to have a succession plan in place for the future. We are actively seeking new Board Members, and will need to be prepared to elect both a new Vice-President and Secretary in the Spring. Even if you do not reside in the lower mainland, we can arrange to hold meetings by Skype or conference call. We encourage anyone who has an interest and desire to help us continue our work to apply for a Board position. We are a working board, so you will be expected to volunteer a few hours a week and be available for six meetings a year. You would also be expected to help organize our annual conference or other events, and occasionally contribute to our newsletter. Please contact any of the Board members to express your interest. We have limited our activities for the next year until we can add to our Board. We will focus our attention in four areas: 1) create new information brochures, 2) identify and implement ways to educate primary care physicians, 3) organize or sponsor educational events, 4) continue to support Pathways magazine. You will find this edition of Pathways full of educational articles and interesting developments from the 2012 ILF conference in Montpellier, France. written by Robert Harris, Director of Dr. Vodder SchoolInternational in Victoria and BCLA member. In his article, Robert focuses on the impact that massage therapists have had on the management of lymphedema. We would like to take this opportunity to extend our thanks to ALL the Voddertrained massage therapists in BC and in particular the following people for their commitment to lymphedema education and BCLA: Carol Armstrong, RMT Garment fitter, facilitator of the lymphedema program at InspireHealth in Victoria, BCLA volunteer. Koby Blanchfield, RMT Educator, member of Canadian Lymphedema Framework (CLF) Education Committee, BCLA volunteer. Catherine DiCecca, RMT Educator, founding member and past President of BCLA. Denise Drisdelle, RMT Facilitator of the lymphedema program at Inspire Health in Vancouver. You will also find an article Page 1 DONOVAN’S STORY: Living with Klippel Trenaunay Syndrome By Leona Towers Surrey BC in the flow Is published by the BC Lymphedema Association AD/COPY DEADLINES ISSUE DEADLINE Winter Nov 09/12 Spring Feb 08/13 Summer May 10/13 SUBMISSIONS We welcome your ideas, contributions, and letters. They will be subject to editing and available space. ADVERTISING Contact us for rates and sizes for this insert if you are a BC advertiser. National advertisers contact Anna Kennedy at [email protected] or 416410-2250. DISCLAIMER The BCLA does not guarantee, warrant or endorse any products or services advertised in this publication. The views expressed do not necessarily represent the views of the BCLA, its Board of Directors or advertisers. BC LYMPHEDEMA ASSN Mailing Address: #215 - 5589 Byrne Rd Burnaby, BC V5J 3J1 1-866-991-2252 [email protected] www.bclymph.org Too often we forget that the lymphedema story is not just an adult story. The fact that primary lymphedema is a condition one is born with means that there are babies, children and teenagers who also live with lymphedema. Let me introduce you to one of them. Donovan was born into a wonderful family and he was born with Klippel Trenaunay Syndrome, or in layperson’s terms, a port wine stain. It is a genetic mutation that causes a purple mark on the surface of the skin, frequently on the face, but in Donovan’s case, on one of his legs. It soon became apparent that this condition went beyond the surface to include vascular and lymphatic complications. Donovan was only four days old when his leg began to swell from the knee down into his foot. His pediatrician referred him to a dermatologist who, thankfully, was knowledgeable about lymphedema and included it in the diagnosis. Donovan was only 6 weeks old. The next step for Donovan was fortunate indeed. He was referred to the Vascular Anomalies Clinic at BC Children’s Hos- pital and, at four months old, he was brought to Dr. Courtemanche and his team. Donovan’s family learned that in his case, Klippel Trenaunay meant that under the port wine stain was a longer leg bone as well as extra tissue, fat and lymphatic fluid. It was the accumulation of lymphatic fluid that caused his leg and foot to swell. Dr. Courtemanche informed them that although lymphedema could not be “cured,” Donovan would receive treatment to ameliorate symptoms and manage the condition as much as possible. He described the complications inherent in lymphedema and advised that a “treat as you go” approach was best for such a young patient. Donovan was an active, happy baby who brought great joy to his family as he progressed through all the usual baby milestones. However, when he began walking, the swelling got much worse where his ankle was not discernible from his enlarged leg and foot. When he was 13 months old, he was hospitalized with cellulitis. It took three weeks of antibiotics to overcome the infection and BCLA BOARD PRESIDENT Lucette Wesley VICEPRESIDENT VACANT SECRETARY VACANT TREASURER Michelle Kinakin DIRECTORS Lene Tonnisen Leona Towers Elliott Weiss OTHER VOLUNTEERS FUNDRAISING VACANT MEMBERSHIP VACANT Membership is temporarily being managed by Lynn Holloway NEWSLETTER Wendy Bowles WEBSITE Lene Tonnisen Cyndi Cassidy Phone: 604-888-8811 Toll-free: 1-888-988-5882 Fax: 778-355-1185 www.bcmedequip.com 2 locations to serve you - Coquitlam & Burnaby - call for an appt. For exceptional service and experience for ALL your compression and lymphedema needs Compression garments - off the shelf & custom made Lymphedema day and night-time garments Mastectomy supplies, specialty bras Lymphapress - sales, rental, onsite pump therapy Full line of home health care products Patricia Montagano, RN, BSN Certified Lymphedema Consultant, Expert Garment Fitter [email protected] Page 2 IN THE FLOW - BCLA AUTUMN 2012 compression bandaging to manage the swelling. A compression garment was prescribed. The effectiveness of the garment was proven when the measurements taken for ordering this custom toddler garment were compared to measurements taken after just three hours of wear - an immediate decrease of a half size! The challenge was now to convince a toddler the necessity of wearing that garment and to keep the compression bandages on at night. Most people can relate to the frustration of attempting to toilet train a toddler all that on and off with the clothes. Imagine what it must be like to do so when that toddler is wearing a compression garment! BC EVENTS Last Wed of month INSPIREHEALTH - VANCOUVER 604-734-7125 Free lymphedema information sessions for people with cancer (past or present) only. INSPIREHEALTH - VICTORIA 250-595-7125 Sep 30/12 CIBC RUN FOR THE CURE In various BC cities FUNDRAISING Thank you to the following people who have so kindly donated to BCLA since our last newsletter. Eileen Holloway $10/mo Monthly gift in memory of Lorraine Warnock, Lynn Holloway’s mother. Parents and grandparents had to learn how to help Donovan into his garment as well as how to wrap his leg with compression bandages. They also learned the need to be patient and accepting even when discovering that Donovan, driven by discomfort, had removed the bandages. His wise mother recognizes that the habit of wearing compression garments/bandages is best achieved when one is young, but it sometimes means ‘losing a battle to win the war’. Donovan’s compression garments may be small, but that doesn’t mean the cost is. Each pair is $490 and needs to be replaced every six months, or more often depending upon his growth factor. Fortunately, compression garments are fully covered by his parents’ extended medical plan. As Donovan grows, the affected leg is longer, making growth milestones more difficult for him. Donovan is now an active, very social five-year old with lots of energy. He is excited about life and appreciates all it has to offer. He enjoys going to kindergarten, playing with his cousins and friends, and sleepovers at Grandma’s. He is big for five, an attractive boy with dimples when he smiles and big blue eyes that twinkle with enthusiasm. Donovan seldom mentions his leg and never lets it stop him from doing anything he wants. His family never makes a big deal of it, so neither does Donovan. He can become annoyed when people ask him about his leg, simply because he doesn’t think it should be a cause for attention. The very few times he has said, “I hate my leg,” his family encourages him to use this challenge as an opportunity to rise above it. The relaxed attitude of his family encourages everyone to treat things as they come up. When Donovan was reluctant to wear shorts in kindergarten, his garments were ordered black so there was no confusion about him wearing stockings. Now he wears shorts whenever he can. Donovan wasn’t enthusiastic about playing soccer, so he tried skating and discovered that he is good at it. Now he enjoys playing hockey. He is also enthusiastic about learning karate and, in true determined style, Donovan managed to get his family to figure a way to fit his garments to allow him to wear thongs by customizing his garments for full toe exposure! Donovan hasn’t had any recurrence of cellulitis. He wears his garment during the day, and night-time bandaging continues even if he takes them off at times - the philosophy being not to make a big deal of it so that he won’t ever wear them again. Lotion for dry skin is applied daily. He doesn’t yet undergo any massage treatment since being still for that length of time is difficult for someone his age. The team Donovan sees annually at the vascular clinic at Children’s Hospital has grown from the original three to seven health care professionals, which includes a nurse who the parents can call at any time they have a question or concern. Donovan’s greatest asset is his loving, supportive extended family that encourages rather than pampers, empowers rather than overprotects and, rather than having him feel sorry for himself, never let his lymphedema stop him from doing anything he wants to do. They are teaching him that rather than to dwell on his difficulties, he can use his experiences to make himself the best person he can be. MEMBERSHIP Welcome new members! I = Individual P = Professional C = Corporate I Beth Brooks Vancouver I Sandy Janzen Agassiz I Heather Parker Surrey IN THE FLOW - BCLA AUTUMN 2012 Page 3 PROFESSIONAL DIRECTORY CORPORATE MEMBERS PROFESSIONAL MEMBERS BACK ON TRACK FITNESS - MOVING BEYOND CANCER Joanne Morgan, 731 W 16th Ave, Vancouver Tel: 604-787-1494 / [email protected] Website: www.backontrackfitness.ca MARLENE ALLEN , Shoppers Home Health Care 709-1301 Main St, Penticton Tel: 250-492-7592 [email protected] DENISE DRISDELLE, RMT #303 - 2730 Commercial Dr, Vancouver Tel: 604-872-1675 [email protected] / www.manuallymphdrainage.ca BC CANCER AGENCY - LIBRARIES Covering all five health authorities Tel: 604-675-8004 / Fax: 604-675-8009 [email protected] / www.bccancer.bc.ca CAROL ARMSTRONG, BA, RMT, EGF-Garment Fitter Fairfield area, Victoria Tel: 250-598-8004 / Fax: 250-598-8044 [email protected] GABRIELLA FRIESEN, RMT Grandview Massage Therapy #303 - 2730 Commercial Dr, Vancouver Tel: 604-872-1675 / [email protected] BC MEDEQUIP HOME HEALTH CARE LTD 2230 Springer Ave, Burnaby, BC V5B 3M7 Tel: 604-888-8811 / Toll-Free: 1-888-988-5882 [email protected] / www.bcmedequip.com KYLA BECK, RMT Grandview Massage Therapy Clinic #303 - 2730 Commercial Dr, Vancouver Tel: 604-872-1675 / [email protected] HELEN GARFIELD, Garment Fitter Healthy Life Garments 5864 Gardi Rd, Kamloops Tel: 778-220-2269 / [email protected] DR VODDER SCHOOL™ INTERNATIONAL PO Box 5121, Victoria Tel: 250-598-9862 / Fax: 250-598-9841 [email protected] / www.vodderschool.com KOBY (Linda) BLANCHFIELD, RMT Cedar Hills Lymphatic & Massage Therapy Clinic 9474 - 126th St, Bsmt, Surrey Tel: 604-589-2291 / [email protected] SARA HODSON Live Well Exercise Clinic Inc 306-1676 Martin Dr, Surrey Tel: 604-541-2846 / [email protected] LIFECARE MEDICAL Tara Hashemi - Garment Fitter #130 - 3030 Lincoln Ave, Coquitlam, Tel: 604-941-5433 [email protected] / www.lifecare1.ca SHAWNA BOND, Breast Health Navigator Breast Health Centre - Victoria General Hospital 1 Hospital Way, Victoria Tel: 250-727-4467 / [email protected] DIANE LJULJOVIC, RMT Northview Massage Therapy Clinic #300 - 124 Lonsdale Ave, North Vancouver Tel: 604-986-3771 / [email protected] LYMPHEDEMA DEPOT LTD 12 - 111 Fourth Ave, Ste 347, St Catharines, ON Tel: 905-687-8500 / [email protected] www.lymphedemadepot.com MELANIE BRANCATO, RMT 4560 Waldy Rd, Cowichan Bay Tel: 250-748-3351 [email protected] CHRISTINE MILLER, RMT Motion Massage Therapy #210 - 1001 Gibsons Way, Gibsons Tel: 604-886-9012 / [email protected] MACDONALD’S PRESCRIPTIONS LTD - #3 2188 W Broadway, Vancouver Tel: 604-738-0733 [email protected] / www.unipharm.com ELIZABETH CARTER, RMT 239 East Valley Dr, SE, Marietta, GA, USA Tel: 770-565-1608 [email protected] SONJA REDDEN, PT Healing Rivers Physiotherapy #206 - 1811 Victoria St, Prince George Tel: 250-649-0886 / [email protected] MACDONALD’S PRESCRIPTIONS LTD 746 W Broadway, Vancouver Tel: 604-872-5496 [email protected] / www.unipharm.com C JULIE CHATELAIN, RMT Massage Therapy Group #201 - 821 Burdett Ave, Victoria Tel: 250-383-3011 / [email protected] EVA SHAM, RN Vancouver Coastal Health Authority 3425 Crowley Dr, Vancouver Tel: 604-707-3614 / [email protected] MEDICAL TOWER DRUGS #6 - 2151 McCallum Rd, Abbotsford Tel: 604-859-7651 [email protected] JESSICA DECKER, RMT Jessica Decker Massage Therapy Clinic #313 - 1095 McKenzie Ave, Victoria Tel: 250-580-4210 / [email protected] BYRON SHIER, MBA, BSc, OT, CLT-LANA, CHE Canadian Lymphedema & Rehabilitation Services, Inc. Tel: 604-566-0824 / Fax: 604-566-0859 www.canadianlymphedema.com MASTECTOMY SHOP, The Cindy Loftus, RPN, Garment Fitter #5 - 13665 96th Ave, Surrey Tel: 604-581-0089 / [email protected] GRACE DEDINSKY-RUTHERFORD, RMT North Shore Lymphedema Clinic 1372 Marine Dr, North Vancouver Tel: -551-8202 / [email protected] DAWN SPARKS, RMT Cross Roads Physio & Massage Therapy #350 - 507 W Broadway, Vancouver Tel: 604-568-1337 / [email protected] SHOPPERS HOME HEALTH CARE #202 - 370 E Broadway, Vancouver Tel: 604-876-4186 [email protected] CATHERINE DICECCA, RMT Millstone Massage Therapy 402 Millstone Ave, Nanaimo Tel: 250-619-4109 / [email protected] JANET SPRAGUE, BHScPT/LANA Keary Physiotherapy Clinic 413 E Columbia St, New Westminster Tel: 604-526-2111 / [email protected] ANGELA DICKSON, RMT Abbotsford Chiropractic & Massage Therapy #220 - 3033 Immel St, Abbotsford Tel: 604-852-5133 / [email protected] COLETTE SWAIN, RMT #6D - 530 Horse Lake Rd, 100 Mile House Tel: 250-706-8765 [email protected] ANNUAL MEMBERSHIP FEES INDIVIDUAL $ 25, 1 copy of PATHWAYS, 1 vote PROFESSIONAL $ 50, 2 copies of PATHWAYS, 1 vote FREE ADS - 4-lines in Professional Directory of newsletter and on website CORPORATE $100, 5 copies of PATHWAYS, 1 vote FREE ADS - 4-lines in Professional Directory of newsletter and on website GOLD FREE - Available by special request for people with lymphedema who find the membership fee prohibitive, no voting privileges Page 4 LENE TONNISEN, BA (Hon) PE, RMT Certified CDT Therapist & JoViPak Fitter 9474 - 126th St, Surrey Tel: 604-807-3449 / [email protected] GWEN VALENTIC-MORRISON, RMT Ascension Massage Therapy 14939 71st Ave, Surrey Tel: 778-991-4263 / [email protected] LESLIE WILLIAMS, RMT Serenity Wellness Clinic #201 - 636 W Broadway, Vancouver Tel: 604-879-5995 / [email protected] IN THE FLOW - BCLA AUTUMN 2012 Fall 2012 Volume 1, Issue 3 Lymphedema Association of Manitoba Swelling with Emotion International Lymphoedema Children’s Camp This issue of Swelling with Emotion is dedicated to the 4th International Lymphoedema Framework Conference and the International Lymphoedema Children’s Camp which was held in Montpellier, France in June 2012. I personally attended the children’s camp with my son Austin and I have to say, it was the most amazing experience; one that Austin and I will not forget. For me, it was all about Austin. I wanted Austin to meet other kids with lymphedema. I wanted him to see that there are other children out there that have the same condition as him. I wanted him to know that he was not alone and that there are others, older children, that he can talk to. Austin was so happy to meet the other children. Language was a bit of an issue but somehow they were still able to communicate. We were fortunate to have other parents in attendance that spoke English and who could translate for their children. The week long extravaganza was video taped by a professional media crew. The intent of the ILF is to create a documentary about children with lymphedema and this Box 403 Lac du Bonnet Manitoba R0E 1A0 by Kim Avanthay EMAIL lymphmanitoba @yahoo.ca week set the landscape for an exceptional learning tool. During the International Lymphoedema Framework conference, a quick presentation highlighting the week long adventures of the camp, was shown to the conference delegates. If this is any indication of what the documentary will be like, we will surely be blown away. The video was so moving that you couldn’t help but swell with emotion as you were watching it. Amazing!! I’ve been to many conferences regarding lymphedema. Austin has not. This was a benefit to him to be able to see through his own eyes, the information that I’ve been sharing with him and trying to get him to understand. It was great that the teachers were someone other than his mother and that he was able to grasp the importance of our daily routine and see how other maintenance options could be incorporated. The camp was truly an amazing experience for both parent and child and I hope that in time, this will be an experience that we can offer to others, closer to home. Our sincere gratitude to the ILF, Montpellier University, all of the facilitators and students who ensured the week long activities were enjoyable and beneficial for our own personal learning experience. Thank you!! Notre sincère gratitude à l'ILF, Université de Montpellier, tous les animateurs et les étudiants qui ont assuré la semaine des activités de long ont été apprécié et bénéfique pour notre propre expérience d'apprentissage personnelle. Je vous remercie! Lymphedema Association of Manitoba—Fall 2012 WEB www.lymphmanitoba.ca Inside this issue: ILF Children’s Camp (continued) 2, 3 4th ILF Conference Review 4, 5, My Experience at the 4th ILF Conference 6, 7 Resource Guide 8 We need you! The Lymphedema Association of Manitoba is sending out a call for help. Please contact the LAM for information on volunteer opportunities: Fundraising/Partnership Development Conference/Symposium Planning Newsletter Committee Website Development Page 2 Swelling with Emotion International Lymphoedema Children’s Camp (continued from page 1) Bandaging session Writing activity at the camp Anna, Ludivine, Guillaume, Theo, Marin, Austin and Leo Austin, Leo and Soren on the field trip to Epidaure It was an extraordinary experience for my daughter Anna and me. Anna had much fun making the film. The team crew was just wonderful, comprehensive, loving, and very professional too. The Montpellier hospital team did a great job too. They were staying there, caring for us, paying attention and laughing with us. Meeting other people from all over the world was fascinating. It's good to be able to share about lymphedema with people that have the same problem. My daughter's conclusion : "If I hadn't had lymphedema on my leg, I wouldn't have met those fine friends in Montpellier, and it would have been a shame." Olivier de Robien (parent) The last photo shoot at the camp - Christopher with the rest of the children Lymphedema Association of Manitoba—Fall 2012 Page 3 Volume 1, Issue 3 International Lymphoedema Children’s Camp (continued) Parents’ table at the Gala Dinner Camp attendees at the ILF Conference 43 Media’s table at the Gala Dinner The children with the camp facilitators at the Gala Dinner 43 Media were invited by the ILF to come to the summer camp in Montpellier to make a short documentary about children with lymphedema. The children's involvement in the film gave them experience on a real film set, working with a film-crew...both in front of and behind the cameras. Their participation was vital to the content of the film of course, but their professionalism, patience and dedication to the project were invaluable! “The organization of the camp, with its careful balance of information-giving workshops; free time for the families to share their experiences and have fun together; and the tight film schedule (which had to be shot while we had all the children there together), made for a truly remarkable week which has had a profound effect on all of us at 43 Media”, Amanda Atkins from 43 Media stated. “Here's to the next one!” Guillaume, Marin, Arthur and Theo Lymphedema Association of Manitoba—Fall 2012 Page 4 Swelling with Emotion 4th International Lymphoedema Framework Conference Review The following is a review by Wanda Guenther of her experience while attending the International Lymphoedema Framework Conference that was held in Montpellier, France, June 28—30. Wanda is a certified lymphedema therapist (RMT, MLD), living and working in Winnipeg, Manitoba. I had the opportunity to attend the 4th International Lymphoedema Conference, held in Montpellier France, this year. Montpellier is a beautiful city. A lot of shopping happens in this city and the European setting is so amazing; small streets, shutters on screen-less windows (coming from Manitoba, it's amazing) and lots of people. Montpellier was a great place to attend a conference and I considered it a privilege to do so. The conference covered the major current issues important to lymphedema professionals, patients, families, and all those connected to that world. The various topics were covered via workshops, lectures, and discussions and I have summarized my experience and comments of those of which I attended. Lymphoedema and disability was presented by Pierre Castelein and Pierre Brantus. The discussion emphasised how expensive it can be to live with lymphedema— the cost associated with diagnosis, treatment and ongoing maintenance of this condition. Treatment alone includes MLD therapy, compression wrapping, wound management and the ongoing self-management of compression garments, skin care and exercise. Through discussions with other therapists, I learned that lipedema is normal round fat cells gone wild - it just keeps building because of life style, presence of lymphedema, etc. Lipedema cells grow in a different shape, in other words, they are not a normal cell. That is why it cannot be managed with diet or exercise alone. When measurement after treatment for lipedema indicates a positive difference, it is not the fat we have gotten rid of, it is the edema locked into the cells—diet does not reduce lipedema. It was recommended to use Manual Lymph Drainage (MLD) and low pressure bandages and garments to avoid lymph vessel collapse and to support volume loss. Therapeutic education of children with lymphoedema and their families. Some issues discussed included: The painful journey for the families with a focus on the difficulty of the initial diagnosis and obtaining the correct diagnosis. "Reaching the expert" along with the fear of loss regarding expert care; the need for local care and access to services. Parents need to work with the professionals and the existing school system. The school alone can present some challenges, depending on awareness and flexibility of the system. Child patients and their siblings typically have to take responsibility at an early age. Family time and sibling time together can be more limited. Potential sibling responses to the situation of time and resources invested in one child, such as jealousy and envy. Parental conflict associated with taking care of the sick child. In general, family life can suffer from lack of spontaneity. There is the challenge to normalize the family experience and minimize the impact. Yet, as one parent stated, "we have to consider lymphedema in everything we do." Consideration is by Wanda Guenther required for the tensions which normally come with childhood, even without the health challenges. As the children grow to adolescent age, the condition generally has more impact. Issues can include body image and various adopted coping mechanisms, such as denial, hiding, acting "normal", and emotional distance. Some healthy responses can include acceptance and meeting other teens with a similar condition. For parents, coping may include celebrating small gains, constant comparison (small gains are big), normalizing as much as possible and planning for the future. Some tough challenges remain on receiving accurate information, proper diagnosis, getting the treatment, cost of the treatment and ongoing maintenance. The impact on family life and siblings, the problems with garments, shoes and poor professional knowledge are important for quality of life and cannot be overstated. Palliative care and lymphoedema session was presented by Dr. Anna Towers. I have attended this before but continue to gain knowledge and insight through this expert, passionate and “view from the physician to the therapist” presentation. It is important to know that lymphedema is a problem and if left untreated, can become more of a problem. Solutions may include to set goals for today to improve function, provide comfort and help with today's problems. Palliative care dictates that it is a multidisciplinary relationship; the diagnosis, prognosis and consent. To do something for the patient is better than nothing if that is what the patient Lymphedema Association of Manitoba—Fall 2012 Page 5 Volume 1, Issue 3 4th ILF Conference Review (continued) wants, keeping in mind that a referral from the oncologist and ongoing dialogue with the oncologist is essential. The oncologist should know about the treatment as well as the patient response to the treatment. suction may be possible. Liposuction is expensive as it is recognized as a treatment for cosmetic disorder but not all countries have the same standards. For successful treatment with liposuction there may be a need for 4-5 multiple surgeries and the ongoing maintenance of wearing daily compression garments, along with exercise and skin care. This is a life-time commitment. The relevant questions are: who benefits, when is the best timing for the surgery, what is the associated morbidity, and who pays for the procedure? Therapists need to work within the patient's tolerance, teach and be a support to the family to enhance quality of life. Sometimes the family needs to be involved in the care and the therapist may facilitate that, keeping in mind the ability of the individuals and other practical considerations. You may need to seek support from the caregivers already involved with the goal to provide the best possible support— emotionally and physically. From working in this field for the past 11.5 years, I continue to learn something from everyone that I provide treatment for. Everyone has a different need but the treatment for lymphedema is the same; providing compression wrapping as patients are able to tolerate, teaching the self-wrapping if they and/or their family are able and/or willing to learn this, posturing and removing the wrapping or garments that cause discomfort. One piece of advice I never will forget came from Hildegard Wittlinger at the Vodder School of North America - "If you don't know what to do or where to begin, start with the face", this will provide relaxation, build trust, and give the touch that is so often needed. Surgery and lymphoedema: Launch of International Position Document on Surgery and Lymphoedema. In this session Robert Damstra states that "everything starts tiny". He talked about basic care, diagnosis, prevention and self-management. Also for some, surgery could be an option. MLD and CDT is the recommended treatment but if there is no pitting, lipo- one of the overheads to start this session. This session included the topic of “Primary lymphoedema” by Vaughan Keeley, “A glimpse of the future of the vessels ultrasound” by Michel Dauzat and “Emerging and future treatments” by Stanley Rockson. Discussions included: Diagnosis and treatment of lymphedema based on molecular approaches, familial history and presentation at birth. Genetic factors with the different types of genetics involved. Research and testing to improve the diagnosis and treatment for lymphedema. There is no breakthrough for daily practice for lymphedema treatment in terms of surgery. Some lymphedema volume reduction with liposuction can be successful. However, with obesity, liposuction may not be effective and weight loss may have to happen first. I also attended a workshop on foot and hand strapping. This is an alternative technique that was demonstrated to deal with the edematous hands and feet. Foot and hand strapping could be appropriate for patients who do not respond to the regular method of wrapping. It is impressive that so much compassion and care went into finding a way to improve the quality of life for patients in this particular circumstance. New/future developments in the management of lymphoedema. "Being Ignorant is not as much a shame as unwilling to learn" was written on Overall I feel so privileged to have been able to attend this conference; to meet other therapists in the field, hear what the doctors and researchers are discovering and together anticipate future and positive changes. We are a community moving forward and support for each other is essential. I found these sessions so interesting and stimulating. Some information is of course repetitive, but that is good as well. It is often refreshed and serves as a good reminder for our important work. The new developments are encouraging for the future of lymphedema and I am proud to be part of this community. I am proud of the passion and compassion of my colleagues and look forward to continuing our work to better the life of the person living with lymphedema. Disclaimer: The views that are expressed throughout “Swelling with Emotion” are those of the authors and not necessarily those of the Lymphedema Association of Manitoba. Lymphedema Association of Manitoba—Fall 2012 Page 6 Swelling with Emotion My Experience at the 4th ILF Conference The following is written by Katherine Styrchak, RMT, CLT/CDT. This is a recap of her experience while attending the International Lymphoedema Framework Conference that was held in Montpellier, France, June 28—30. Katherine is a lymphedema therapist living and working in Winnipeg, Manitoba. detect that something was wrong, and well before measuring circumference and calculating volume were able to show a difference.4 Lymphscintigraphy is a test done to trace "large molecules from the interstitial space back to the vascular compartment".1 Essentially, a radioactive tracer is injected into the interstitial space and its uptake by the lymph system is followed using a gamma camera.2 Lymphfluoroscopy injects a nonradioactive solution, a protein actually, that is absorbed harmlessly into the body. It shows up under infrared light.3 This is the same biochemistry that makes fireflies glow. Bio-impedence spectroscopy uses high and low frequencies of electrical current to go through different tissues to detect fluid accumulation. Fluid is the first sign of a failing lymphatic system. Piller reports that bio-impedence detects problems with the lymphatic system eight months before the patient could and/or adipocytes”.6 There may one day be gene therapy, an injection if you can imagine, that would cure certain kinds of primary lymphedema! Those few days in France, I met people afflicted with lymphedema, and it was their experience of living with lymphedema that brought me back to why we need better ways to detect and measure lymphedema. It was easy to get lost in the lab research, looking at gene sequences, getting excited about ongoing research and potential results. But it is always about the people. It was interesting to hear patients’ different ways of managing their condition and under which circumstances they would "cheat". Therapists would call this "noncompliance"; patients view it as "living and trying to fit in". I attended the ILF conference in Montpellier, France at the end of June, 2012. As a "new" MLD therapist (trained in the Dr. Vodder technique in spring 2011), I was thrilled to see doctors, researchers, therapists and people living with lymphedema from all over the world, getting together and presenting the latest research on the care and management of this chronic, often misdiagnosed and misunderstood, condition. The research presentations were fascinating. I loved listening to presenters list the techniques used, view and identify lymph vessels, measure fluid density with bioimpedence and volume with volumetry and of course, measuring tapes. by Katherine Styrchak While the mechanical tonometer had been widely used to measure pitting, it must be held flat on the tissue within 5 degrees of upright to be accurate. Viscoelastic tonometry (VE) measures the tissues' responses to applied pressure, which can indicate fibre and tissue changes. This is still in the research phase. The problem with just using tape measures to calculate volume is that the proportion of tissues may change, while the volume of a limb may stay the same. Fluid, fat and muscle can change in proportion depending on weight gain, loss, increase in exercise, etc. 5 To hear and see that specific genes (FOXC2, VEGF-C, KIFF11, etc.) have been identified as malfunctioning and responsible for certain kinds of primary lymphedema was incredible news. With VEGFC mutations, “lymphedema is due to low-grade inflammation caused by decreased clearance of inflammatory mediators secreted by immune cells Research shows that lymphedema patients want independence and control over their therapy. 7 When properly educated in skin care, diet and exercise, self-bandaging and simple self-drainage, quality of life improves. While there may be a slight increase in volume months into the maintenance phase of treatment, this does not necessarily impact quality of life. 8 Lymph fluid is exactly that: fluid. It moves and the affected limb(s) adjust accordingly. When a person with lymphedema feels that their therapy is maintaining their limb(s) to their expected activity level, that the limb is not interfering with their social life and activities, quality of life is also maintained. The therapist can play a role in identifying patients who may slip through the psychosocial cracks by asking questions about the patient's social interactions. One would not necessarily ask "Are you participating socially?", however, asking what one is doing for exercise or for the weekend is a good way to find out if the person is managing socially. Lymphedema does not affect just the lymphatic system. The more a patient is Lymphedema Association of Manitoba—Fall 2012 Page 7 Volume 1, Issue 3 My Experience (continued) capable of managing his or her lymphedema, the more they are empowered and in effect, become better prepared to move forward with their lives. Participating in the ILF conference in Montpellier gave me the chance to see just how complex the field of lymphedema is and the direction in which it is going. The coming months and years are exciting for the doctors, researchers, and therapists. Nevertheless, one cannot forget the impact lymphedema is having on millions of people and that the field must strive to remain patientcentered in order to improve lives. 1 KEELY, Vaughn, The use of lymphscintigraphy in the management of chronic edema, Journal of Lymphoedema, 2006, Vol 1, No 1, pp 42. 2 KEELY, Vaughn, The use of lymphscintigraphy in the management of chronic edema, Journal of Lymphoedema, 2006, Vol 1, No 1, pp 42. 3 BELGRADO, Jean-Paul, Lymphfluorscopie associee au traitement physique pour le lymphademe, presented at the ILF Conference,Montpellier, France, 2012. 4 PILLER, Neil, Review of impact of relationship issues with veins and their pathologies, presented at the ILF Conference, Montpellier, France, 2012. 5 PILLER, Neil, Review of impact of relationship issues with veins and their pathologies, presented at the ILF Conference, Montpellier, France, 2012. 6 JOHANSSEN, Mads, Peripheral circulation in breast cancer related lymphedema, presented at the ILF Conference, Montpellier, France, 2012. 7 COUPE, Marlene, Éducation thérapeutique du patient. Presented at the ILF Conference, Montpellier, France, 2012. 8 COUPE, Marlene, Éducation thérapeutique du patient. Presented at the ILF Conference, Montpellier, France, 2012. The International Lymphoedema Children’s Camp Participants included: Breast Cancer Lymphedema Support Group Austin Avanthay Theo Bortolotti Anna De Robien Marin Dumas Ludivine Fuster Soren Jeppessen Christopher Johansson Guillaume Marchand Leo Terninck Meets in Winnipeg at 6:30 p.m. On the third Tuesday of the month EMAIL: The children all got to know the actor, David Coburn, very well as they spent a lot of time with him both on and off the air. Thanks to all involved for making this experience truly amazing!! [email protected] You can also find us David Coburn (actor) Lymphedema Association of Manitoba—Fall 2012 on Facebook Page 8 Swelling with Emotion Resource Guide Lymphedema Association of Manitoba DISCLAIMER Businesses and service providers pay a fee to be listed. The Lymphedema Association of Manitoba is not responsible for quality of service or rates charged. KAREN DOBBIN, BMRPT, CDT/CLT Licensed physiotherapist certified in the area of lymphedema care and cancer rehabilitation Donna Sarna Physiotherapy & Rehabilitation 102 – 897 Corydon Avenue, Winnipeg, MB phone: 204 452-2608 Lymphedema Association of Manitoba—Fall 2012 Annual Resource Guide A special edition of Lymphedema Matters Volume 15 Issue 3 Fall 2012 Knowledge is power Welcome to the 5th Edition of our Annual Fall Resource Guide. Navigating through the maze of obtaining a diagnosis, treatment, and reimbursement for lymphedema care can be a challenging and daunting task. That is why the Lymphedema Association of Ontario has prepared this resource guide to help you, regardless of whether you are a patient learning to live with lymphedema, a health professional working with lymphedema patients, or a compression garment fitter who is trying to provide outstanding service to your clients. Just as someone who lives with another chronic condition such as diabetes or arthritis, it is knowledge and access to information that will empower one to confidently manage their lymphedema. We are committed to providing you with the tools and resources to facilitate this process and make your journey easier. From the LAO Board and Staff We hope you will find the compilation of information helpful and encourage you to share this guide with your colleagues, family members, doctor and other members of your health care team. We still have a long way to go in spreading awareness and education of lymph– edema to all health professionals in Ontario. Sharing this guide is another step forward. Lymphedema care in many countries is beginning to follow a chronic disease model - that of selfeducation, self-monitoring and selfmanagement. Fall 2012 Shannon Moore (left), Outreach and Event Planner and Anna Kennedy (right), Executive Director The Lymphedema Association of Ontario Contact us for your free copy of our information pamphlet, outlining the lymphatic system, types of lymphedema, symptoms, components of lymphedema management and important precautions to take. Resource Guide Disclaimer: The LAO does not guarantee, warrant or endorse any product or service advertised in this publication. 2 Resource Guide The Lymphedema Association of Ontario Fall 2012 Lymphedema Association of Ontario Committed to improving the lives of people living with lymphedema MEDICAL ADVISORY BOARD Miles Johnson PhD Toronto Sunnybrook Centre Ian Dayes MD Hamilton Juravinski Centre Robert Harris RMT CDT Vodder International School Donna Lue Reise RN CDT Talspar Nursing Services Martina Reddick RN CDT Eastern Health Services ISL Consensus Document on the Diagnosis and Treatment of Peripheral Lymphedema (2009) http://www.u.arizona.edu/~witte/2003consensus.pdf International National Lymphedema Network (USA) Guidelines and Position Documents http://www.lymphnet.org A prospective surveillance model for rehabilitation for women with breast cancer (2012) http://www.ncbi.nlm.nih.gov/pubmed BOARD OF DIRECTORS Kim Gagan President Leona DiCasmirro Vice-President Janice Goldberg Secretary Fran Suran Acting Treasurer Directors at Large Ruby Kreindler, Sarah Wigan STAFF Anna Kennedy Executive Director Shannon Moore Outreach and Event Planner Honorary Patron Honourable David C. Onley Lieutenant Governor of Ontario Lymphedema Association of Ontario Charitable Registration Number 87165 5049 RR0001 Fall 2012 International Lymphoedema Framework (ILF) Best Practise Document - 2nd Edition • Position Document: Compression Therapy (2012) • Position Document: Surgical Intervention (2012) ILF Focus Document - Care of Children with Lymphoedema (2011) ILF Focus Document - The Management of Lymphoedema in Advanced Cancer and Oedema At the End of Life (2011) International Consensus Document - Best Practice for the Management of Lymphoedema - 1st Edition (2006) http://www.lympho.org/link/php ACS - A primer on the identification and management of lymph-edema in Oncology (2009) http://caonline.amcancersoc.org/cgi/content/full/59/1/8 Saskia Thiadens RN CDT United States-NLN Shetty Lee MD Austria-Wittlinger Clinic Neil Piller PhD Australia-Flinders University 4161 Dundas Street West Toronto, Ontario M8X 1Y2 Toll Free: 1-877-723-0033 Fax: (416) 236-7604 [email protected] www.lymphontario.ca Clinical Guidelines TIP: set your internet browser to automatically update you on any lymphedema related news through Google Alert Aqua Lymphatic Therapy Aqua Lymphatic Therapy (ALT) is based on the principles of the Casley–Smith exercise program for lymphedema and is applied in an aquatic environment. The method enhances traditional CDT lymphedema therapy by combining principles of lymphatic anatomy and physiology with the effect of water immersion. The water temperature ranges from 31°C to 33°C (78.8-91.4°F). At this temperature slow limb movement can be performed without increasing swelling. The buoyancy of the water holds the limb afloat, enabling exercises and self massage with minimal effort while swelling reduction is facilitated by the hydrostatic pressure of the water which increases lymph and venous return (similar to the effect of a compression garment). The Lymphedema Association of Ontario ALT involves self-treatment in a group setting. Participants are encouraged to choose the exercises which benefit them the most. They are provided a chart with their limb measurement results every month to help them decide how best to continue their individual treatment plan. The participants are thus provided with the tools they need to carry out self-treatment at their convenience and the physiotherapist serves as a resource, but does not direct the individual plans of care. This method provides active opportunities for self-directed care that may enhance self-advocacy, independence and self-esteem. For more information about ALT, including therapists that are trained in ALT and/or group classes visit www.aqua-lymphatic-therapy.com Resource Guide 3 Lymphedema Certified Therapists (CDT) Barrie/Orillia Hamilton Mississauga Cathy Petzoldt PT 705-794-3772 [email protected] Donna Lue Reise RN LANA 905-385-3176 or 905-523-4999 [email protected] Beaverton Maureen Sawyer RPT 905-389-086 [email protected] www.msphysio.ca Kimberly Tweedie RMT 416-569-5349 [email protected] Kingston/Brockville Rebecca Wilkinson RMT ADP ALT 905-830-9700 www.rebeccawilkinsonrmt.com Sarah Cowley RN RMT 705-426-2894 Beamsville Vivian Dim OT Reg(Ont) LLCC 289-897-8707 [email protected] Brampton Angela Hunt RMT LLCC ALT 905-495-7308 www.angeladhunt.com Brantford Pamela Monarch RMT 519-751-7096 ext.3414 www.pammonarchrmt.com Lynette MacKinnon RMT 613-507-3344 www.westendmassagetherapy.com Jennifer Phillips RMT Kingston 613-340-0306 Brockville 613-342-3333 Kitchener Louise Danieli RMT 519-569-8555 [email protected] Nancy Scagnetti RN RMT ALT Mobile Therapist 905-607-8422 [email protected] Newmarket North Bay Susan Woodman RMT LANA 705-497-0683 [email protected] Oakville Caroline Bieze RMT LLCC 905-339-3950 www.iahp.com/cbieze Janet Millward RMT Ayr, Ontario 519-632-9991 [email protected] Nancy Shoemaker RN RMT LLCC CDT 905-465-2929 [email protected] Crystal Sivill RMT 519-772-1010 [email protected] Ray Vickers RMT CK Oakville/Milton 905-699-3451 [email protected] Orillia Carlos Ospina, D. Ac. MLD 647-705-8995 info@ carlosospinahealthsolutions.com Swelling Solutions 519-749-0102 www.lymphcare.com Catherine Burt RN, RMT ALT Melody Southgate RMT Rachelle Wright RMT CK ALT Durham Region London Oshawa/Port Perry Burlington Kimberly Boersen-Gladman RMT 905-332-6542 www.headtofootoasis.ca Ramona Herman RMT ALT 905-319-2454 [email protected] Anne Dockendorff RMT 705-327-0457 [email protected] Jason Mandalentsis RMT ALT 289-388-6080 [email protected] Helen Murray RN Lymphcare Centre 519-913-0181 [email protected] Heather Cirone PT Park Road Physio 905-438–1500 [email protected] Phyllis Christian RMT 905-721-3828 Mobile Therapist (Durham Region) Midland/Penetang Susan Sweetapple RMT 905-903-3850 [email protected] Etobicoke/West Toronto Alison Glasbey RPT 416-251-2300 [email protected] Violetta Soffe RMT Mobile 416-727-0020 [email protected] Guelph Renata DeForest RMT 519-993-2736 (cell) [email protected] 4 Resource Guide Eryn Lorriman RMT 705-549-1700 www.georgianbay massagetherapy.ca Markham Reshmi Cain RMT 905-471-5311 www.villagewellnessclinic.com Ann DiMenna PT Mobile-Toronto and Area 647-500-4771 www.anndimennaphysio.com Milton Rae Baron RMT 905-878-9041 [email protected] Ottawa Catherine Croteau RMT 613-297-9325 www.croteaurmt.ca Julie Dagenais-Watson RMT ADP 613-255-2255 www.cancerrehabmassage.com Haley Rehab Clinic 613-422-5061 two locations www.haleyrehab.ca Louise Killens RPT Mary Hutton RN [email protected] The Lymphedema Association of Ontario Fall 2012 Owen Sound Toronto Danuta Valleau PT 519-534-1788 [email protected] Sylvia Crowhurst RMT 416-537-3555 www.lymphaticdrainage.ca Sharon Evans ALT Kinexions 519-371-8314 [email protected] Lindsay Davey PT Toronto Physio 416-792-5115 www.torontophysiotherapy.ca Peterborough Marnie Gallant RMT 416-732-5218 or 416-482-4476 [email protected] (Mobile) Janice Simmonds RMT Ashburnham Massage 705-876-8561 Sasha Goudriaan RMT 416-523-8364 [email protected] Pickering Anne-Marie Craigen RMT 416-616-8672 [email protected] Lucy Romano RMT 647-342-1801 [email protected] Toronto Lymphocare Centre 416-531-7612 or 705-458-2156 www.torontolymphocare.com Niki Travers PT 647-701-5582 Spadina & Bloor Massage Therapy Clinic Akari Yokokawa RMT 416-792-4400 www.careforlymph.com www.mahayaforesthill.com Unionville Pam Hammond RMT 416-928-9650 Spadina & Bloor Massage Therapy Clinic Monica McCarron RMT ALT 905-305-1411 www.labalaba.ca Sophia Finkel HD RMT 416-318-4135 Toronto & Richmond Hill 267 Finch Ave & 8905 Bathurst St Veronica Lelchuk RMT 416-315-0640 [email protected] Waterloo St.Catharines Nadine Maraj-Nyiri RMT Mobile Therapist 416-569-2280 [email protected] Richmond Hill John Mulligan RMT LANA 905-687-1828 www.lymphedematherapist.com Cindy Schultz RMT Port Health Clinic 905-684-6066 [email protected] Thornbury Esther Epp-Kaethler RN ALT 519-599-6597 [email protected] Tillsonberg Jeanne Magashazi RMT 519-842-3702 [email protected] Petra Norris RN 416-841-3119 Toronto and Etobicoke [email protected] Catherine Paterson RMT [email protected] 647-351-2222 Yonge/Eglinton Jo-Anne Racette RMT 416-465-8179 www.massageondanforth.com Janmari Baas Ross RMT 519-884-4848 [email protected] Bernadette Tallon RMT 519-884-4848 [email protected] New Hamburg 519-662-9331 Become a Member Place your listing here by becoming a Professional Member with CDT LISTING Contact us today at 1-877-723-0033 or send in the membership form on page 9 Ly Raha RMT 416-446-5911 Legend All therapists listed have been trained by a LANA approved school and received a minimum of 135 hours of post graduate training (1/3 theoretical, 2/3 practical) specific to the treatment of lymphedema including the following Complete Decongestive Therapy Components: Manual Lymph Drainage, bandaging, compression devices review, exercise, diet/nutrition and skin care. The therapists are either Registered Nurses (RN), Physiotherapists (PT), Occupational Therapists (OT) or Registered Massage Therapists (RMT) and have provided proof of certification. Those who have additionally certified in Aqua Lymphatic Therapy are indicated with ALT. Disclaimer Therapists pay a fee for listing their services. The LAO is not responsible for the services performed or rates charged. Fees Hourly rates for lymphedema therapy can range from $70 to $140. Insurance plans will reimburse only to the standard provincial rates of therapy that MLD is billed under. As an example, the Registered Massage Therapists Association of Ontario’s standard 2011 rate is $93 for 60 minutes of treatment (including HST). Fall 2012 The Lymphedema Association of Ontario Resource Guide 5 Hospital Based Lymphedema Care Hospital Contact Referral Base Royal Victoria Regional Health Center Barrie Rowena Hill, PT/CDT 705-728-9090 Ext. 43522 Oncology related secondary LE Assessment, education, MLD, compression bandaging, exercise, ADP authorizer Juravinski Cancer Centre Hamilton Margaret Forbes, RN (EC) Nurse Practitioner 905-387-9495 Ext. 64176 Breast cancer & melanoma patients of oncologists affiliated with the JCC Assessment, treatment plan, education, compression bandaging through CCAC, ADP authorizer, refer out for MLD Grand River Regional Cancer Centre Kitchener Janet Millward, PT, 519-749-4370 Ext.5781 519-749-4382 (fax) LE secondary to cancer only Assessment, ADP authorizer, education, bandaging, MLD London Health Science Linda Evans, PT 519-685-8117 Primary and secondary LE patients, Centre Victoria Hospital Gwen St. John 519-685-8051 (fax) referred by physician London Assessment, ADP authorizer, compression bandaging, education, pump, refer out for MLD London Regional Cancer Program East London Mia Pearson Intake Clerk (New patient referral) 519-685-8664 (fax) Lyn Kligman, Acute Care Nurse Practitioner 519-685-8602 Secondary LE related to all cancers Weekly clinic every Monday: assessment, education for self management, referral to community resources for garment fitting, physiotherapy, MLD, CCAC for compression bandaging, ADP authorizer, insurance prescriptions St Joseph’s Parkwood Hospital London Chronic Wound Management Clinic David Keast, MD FCFP Anne LeMesurier, RN 519-685-4027 519-685-4075 (fax) Intake by physician referral Assessment, diagnosis, initiation of compression, wound care, referral to CCAC, education, ADP prescriber and authorizer, work with Certified Advanced Fitters in community Credit Valley Hospital * Mississauga Physiotherapy Department 905-813-1571 905-813-4209 (fax) Outpatient PT (upper extremity only) Referrals only from CVH doctors on staff Assessment and treatment, compression bandaging, education, pump, refer out for MLD North Bay Regional Health Centre North Bay Physiotherapy assessment, Sudbury Regional Hospital * Sudbury Louise Sylvestre, PT Laura Lake, PT Primary and 705-474-8600 705-474-8600 secondary LE with referral Ext. 4843 Ext. 4846 ADP authorizer, compression bandaging, education, pump Physiotherapy 705-522-6237 Ext. 2175 Secondary LE only with referral from health care professional or self referral 807-684-6270 Urgent: 807-624-4479 Inpatient and outpatient (designated to cancer patients) Assessment, ADP, education, MLD, pump Thunder Bay Regional Health Science Centre Thunder Bay Leona DiCasmirro, PT/CDT Assessment, education/prevention, treatment (MLD), bandaging, ADP, garment fitting and follow-up education Odette Regional Cancer Neda Soltani, RN Susan Bowles, RN Centre—Sunnybrook Ingrid White, RN Health Sciences Centre Toronto Assessment, ADP, education, refer out for MLD 416-480-5000 Ext. 81406 Secondary LE patients of the Odette Cancer Centre Princess Margaret Hospital Toronto Acting Clinical Lead 416-946-4501 Ext. 5267 UHN out-patients with LE—upper extremity and upper body or gyncecological secondary to cancer Stephanie Phan, OT PMH Survivorship Program—Lymphedema Lymphedema Clinic: assessment, ADP, group education and customized individual plan for learning lymphedema self-management, refer out for MLD, skills refresher course 6 Resource Guide The Lymphedema Association of Ontario Fall 2012 Hospital Contact SickKids - The Hospital for Sick Children Toronto Pamela Hilliard, PT Referral Base 416-813-6755 Ext. 0 Upper and lower extremity LE (mostly primary), children under 18 Assessment, monitoring, education, ADP authorizer, compression recommendations/bandaging, refer out for MLD St. Joseph’s Health Centre Toronto Marie Eason Klatt, OT 416-530-6058 Ext. 3550 Primary and secondary LE within encatchment area with referral Assessment, ADP, education, teach compression bandaging, assessment for pump, refer out for MLD Toronto General Hospital Cindy Dixon, RN 416-340-3380 416-340-5029 (fax) Lower extremity Primary and secondary LE patients Diagnosis, ADP authorizer, assessment for pump, refer out to CCAC for compression bandaging Windsor Regional Hospital Adriana Golob, PT Windsor Group education classes (one session per month) 519-257-5207 Ext. 72301 Primary and secondary LE patients Women’s College Hospital * Toronto 416-323-6400 Ext. 4414 Secondary LE, breast cancer patients at Women’s College Hospital Naffisa Nathwani, OT Tania Obljubek, PT Assessment, ADP, education, bandaging, initial compression and MLD, refer out for MLD maintenance phase LEGEND: ADP - Authorizers for Assistive Devices Program compression garments, CCAC—Community Care Access Centre, CDT - Complete Decongestive Therapy, LE - Lymphedema, MLD - Manual Lymph Drainage, OT- Occupational Therapist, PT - Physiotherapist, Pump - pneumatic extremity pump, RN - Registered Nurse *information could not be validated Lymphedema Support Groups Brantford Oshawa Meetings are held every second Tuesday of the month from 6:00-7:30 at St. Joseph’s Lifecare Centre: 99 Wayne Gretzky Parkway, 4th Floor (Boardroom). Contact Pam Monarch at 519-751-7096 x3414 (Mon) or 519-756-2920 x255 (Tues and Wed) Information, emotional and practical support for those with lymphedema, and for those at risk. The group meets every third Thursday evening of the month, from 7 p.m. to 9 p.m. 86 Colborne St. West. For more information or to register call Hearth Place at 905-579-4833 Kingston Ottawa The group meets 5 or 6 times a year between September and June, usually on the last Wednesday of a month. One-on-one support is available at other times. Contact Breast Cancer Action Kingston at 613-531-7912 or visit www.bcakingston.org Workshops-Learn the facts about secondary lymphedema, how to self-monitor, important lifestyle recommendations, when and where to go for help and exercises to delay the onset or manage lymphedema. Go with the Flow is an exercise program designed for breast cancer patients to minimize and reduce the risk of lymphedema. To register for the lymphedema workshop or exercise programs, please call Breast Cancer Action Ottawa at 613-736-5921 or visit www.bcaott.ca for further information. Waterloo region meets monthly in the Victoria Room, Victoria Place, 290 Queen Street South, Kitchener on the last Tuesday of each month at 7pm. Call Melody Southgate at 519-749-0102 North Bay Educational workshops are offered free of charge by Caring Treatments Massage and Lymphedema Clinic and will run once a season. To register and obtain the meeting site, please call Susan Woodman at 705-497-0683 Fall 2012 Toronto Sponsored by the LAO in connection with Wellspring. Sessions are held on the second Thursday of the month between 10:00 am and 12:00 pm at Wellspring in Toronto. To register, please call the LAO at 416-410-2250 or 877-723-0033 toll free. The Lymphedema Association of Ontario Resource Guide 7 Corporate Members Local Fitters Manufacturers/Dealers Coulter’s Pharmacy London www.coulterspharmacy.com 519-451-0750 3M Canada www.3m.com 1-800-265-1849 Paradigm Medical Inc. www.paradigmmed.com 1-800-931-2739 Dell Pharmacy www.dellpharmacy.com Local area numbers available online Bauerfeind www.bauerfeind.com 1-877-629-9889 Pascoe Canada www.pascoecanada.com 1-866-535-0099 Frans Boutique Cambridge www.fransmascetomyboutique.ca 1-877-206-3936 BSN Medical - Jobst Inc. www.jobst.com 1-800-537-1063 Sigvaris Website 1-800-363-4999 Mansueta Medical Garments Toronto 416-591-0006 700 University Avenue Canadian Bandage Shoppe www.cdnbandageshop.com 306-757-7173 Valco/Mediven www.valco.ca 1-800-361-3153 McNiece T.E.N.S. Inc. SW Ontario www.mcniecetens.ca 1-800-681-8367 Farrow www.farrowmedical.com 1-877-417-5187 Venosan www.venosan.ca 613-727-3968 Renaissance Woman Georgetown www.youngspharmacy.com 905-877-2711 JoviPak www.jovipak.com 1-866-888-5684 ShoppersHomeHealth Care www.shoppershomehealthcare.com Local area numbers available online Juzo www.juzo.com 1-888-255-1300 Academy of Lymphatic Studies www.acols.com 1-800-863-5935 The Nu Me Boutique Kitchener www.numeboutique.com 1-800-513-9379 Linotrade Ltd. www.lympholino.com 514-846-1280 Dr. Vodder School International www.vodderschool.com 250-598-9862 Yurek Home Health London www.yurekpharmacy.com 519-963-1142 Lymphedema Depot www.lymphedemadepot.com 905-687-8500 Norton School of Lymphatic Therapy www.nortonschool.com 1-866-445-9674 Become a Corporate Member and promote your services here and on our website. Lymphedivas www.lymphedivas.com 1-855-411-3482 We encourage all our readers to visit the websites of our Corporate Members. 8 Resource Guide Educators The Lymphedema Association of Ontario Fall 2012 Charity Challenge and Fundraising The Lymphedema Association of Ontario receives no government funding and relies solely on memberships and donations to provide programs and services such as our telephone help line, annual conference, Lymphedema Matters and resource guide, the Big Book for Kids Program and our advocacy and awareness activities. Toronto Charity Challenge October 14, 2012 This fall marks the 5th year we will be participating in the Scotia Bank sponsored Charity Challenge 5km walk or run event as Team Lymphedema, raising money and awareness in downtown Toronto. We really need your help and are calling all those living with and at risk for lymphedema, their family members and friends, therapists and health professionals to join us in this walk on Sunday, October 14. Ontario Wide Fundraising If you don`t live in Toronto, you can still participate by considering several options. You can join one of the Charity Challenge satellite teams in Thunder Bay, Niagara or Kitchener-Waterloo or organize your own event in your local city and neighborhood. It can be as simple as just walking, running or cycling in your local park with a friend, or can be more organized by mapping out a walk route and recruiting family, friends and neighbours to participate and solicit their own pledges and sponsorships. If you have another fundraiser idea….call us and we can provide you with tools to help you promote a jewellery party, garage sale fundraiser, Zumba party or idea of your choice. The possibilities are endless. Remember—every dollar counts. Sat. October 13 Kitchener 5km Walk Fundraising Event at Swelling Solutions Sun. October 14 TORONTO SCOTIA CHARITY CHALLENGE Fundraising event Lace up your shoes and mark your calendars to join us Membership has its privileges Your membership and donation make our work possible Annual membership now offers two valuable subscriptions for one low price Name ______________________________ Street ________________________________________________ City ________________________ Province _______________________ Postal Code _____________________ Phone (day) ________________ (evening) ________________ Email _________________________________ 1-Year 2-Year Individual $40 $75 Family $55 $100 Professional $125 $225 Therapists, hospital staff, fitters and non-profit organizations; includes 5 copies of each issue of Pathways, and the LAO local insert Lymphedema Matters, discounts to conferences as well as notification of the AGM—non-voting member. Therapist Listing $50 $95 Added to the professional fee. Includes listing of services in newsletter and website Corporate Listing $250 n/a Donation Amount $250 $100 □ Individual patients and their family members—annual membership fee includes an annual subscription to Pathways, Canada’s Lymphedema Magazine, Lymphedema Matters, as well as membership discounts to conferences and a single vote per adult at the Annual General Meeting Manufacturers and retailers; includes listing and website link on LAO’s marketplace website plus listing in annual fall Resource Guide. $50 $25 Other ___________ Total Payment ______________ Cheque to the Lymphedema Association of Ontario □ MasterCard □ Visa □ Amex Card Number ______________________________________________ Expiry Date (mm/yy) _______________ Name on Card __________________________ Signature ________________________ Date ______________ Mail or fax your completed form to 4161 Dundas Street West, Toronto, Ontario M8X 1Y2 Fall 2012 The Lymphedema Association of Ontario 416-236-7604 Resource Guide 9 Books Websites 100 Questions and Answers About Lymphedema Saskia Thiadens, Paula Stewart, Nicole Stout (2009) American Lymphedema Framework Project www.alfp.org A Leg Up! On Lymphedema Courtney Blair Day (2009) Breast Cancer Action Ottawa www.bcaott.ca/lymphedema/info Coping With Lymphedema Joan Swirsky (1998) Canadian Lymphedema Framework www.canadalymph.org Living Well With Lymphedema Ann B. Ehrlich, A.Vinji-Harrewijn, E. McMahon (2005) Lymphedema: A Breast Cancer Patient’s Guide to Prevention and Healing Jeannie Burt (2005) Lymphedema Caregiver’s Guide Mary Kathleen Kearse, E. McMahon, A. Ehrlich (2009) Lymphedema: Diagnosis and Treatment Horst Weissleder and Christian Schuchhardt (2008) Lymphedema Management: The Comprehensive Guide for Practitioners Joachim Ernst Zuther (2009) Lymphedema: Understanding and Managing Lymphedema After Cancer Treatment American Cancer Society (2006) Overcoming the Emotional Challenges of Lymphedema Elizabeth McMahon and Ann B. Ehrlich (2005) The Big Book of Lymphoedema (for children) Jacquelyne Todd (2009) Thriving After Breast Cancer: Essential Healing Exercises for Body and Mind Sherry Davis and Stephanie Gunning (2002) Voices of Lymphedema Ann B. Ehrlich, C. Burns, E. McMahon (2007) Where the Rivers Meet the Sea: Using the Body Mind Spirit Connections in the Management of Lymphedema Sharon Langfield and Janet McFarland (2nd Edition, 2009) Where the Sky Meets the Earth: A Lymphedema Therapist’s Guide to Working with the Whole Person Sharon Langfield, Janet McFarland, David Rankine (2010) CDs/DVDs International Society of Lymphology www.u.arizona.edu/~witte/ISL.htm Lymphatic Research Foundation www.lymphaticresearch.org Lymphedema People www.lymphedemapeople.com Lymphedema Support Network (Britain) www.lymphoedema.org/lsn Lymph Notes www.lymphnotes.org Lymphoedema Network Australia www.lymphoedema.org.au Lymphology Association of North America www.clt-lana.org Lymphovenous Canada www.lymphovenous-canada.ca Lymph site for children www.lymph4Kidz.com LymTeen website for lymphedema www.lymTeen.com McGill Lymphedema Research Program www.mcgill.ca/lymphedema-research National Lymphedema Network (USA) www.lymphnet.org StepUp-SpeakOut www.stepup-speakout.org Knowledge is the first step to managing your lymphedema successfully Build your lymphedema library Vodder School InternationalInstructional DVDs: Arm Exercise, Leg Exercise and MLD and Lymphedema Patient Education: Educational Series (CD) NEW from the Academy of Lymphatic Studies The Vital Essence: Understanding the lymphatic system in health and disease (CD - professional or patient version) 10 Resource Guide International Lymphoedema Framework www.lympho.org Contact us for the largest selection of lymphedema books www.lymphontario.ca The Lymphedema Association of Ontario Fall 2012 Financial Assistance ADP-Assistive Devices Program Compression garments and sleeves for chronic lymph -edema and extremity pumps for primary lymphedema are partially covered through the Assistive Devices Program (ADP), Ministry of Health and Long Term Care. Any resident of Ontario with a valid health card is eligible to apply. ADP will pay 75 % of the approved cost. Those receiving social assistance benefits may be eligible to receive more money. Lymphedema compression garments are replaced as needed to a maximum of three sets of two outfits each, within a 12 month period. An ADP Equipment/Supply Authorization form can be obtained from an approved authorizer or vendor registered with the ADP or requested directly from the ADP. Step 1: Assessment You must be examined for an initial diagnosis by a medical specialist in the area of vascular surgery, orthopaedic surgery, radiation or medical oncology, internal medicine, paediatrics, plastic surgery or general surgery. A General Practitioner in Oncology (GPO) may also provide his assessment. On an ongoing basis your family physician can complete the ADP assessment form required every two years. pational therapy, registered massage therapy or sometimes nursing care. If submitted expenses are refused by your insurance provider, it is prudent to challenge the decision by speaking with a program administrator and sending them information about lymphedema. A letter of support from your therapist or physician may also help. Income Tax Deductions Certain medical expenses can be itemized as deductions on your income tax return to help reduce the amount of income tax you pay. Examples of eligible costs are: ● Unpaid balance of expenses for treatment/supplies not covered by ADP or insurance ● Travel expenses related to MLD treatment ● Purchase of compression short stretch bandaging supplies For more information on allowable expenses, refer to the Canada Customs and Revenue website at www.crsarc.gc.ca and check under forms and publication - Bulletin IT519R2—CONSOLID—Medical Expense and Disability Tax Credits. Community Support Some community groups provide financial assistance for cancer related expenses to low income individuals. Check www.cancer.ca for an extensive database on the community services available. You can also check with your local parish, Kiwanis, Lions or Rotary Club. Step 2: Authorizer An authorizer will assess the exact type of device required. Authorizers are occupational therapists, physiotherapists, registered massage therapists and registered nurses who have registered with the ADP. Step 3: Purchase Compression garments and sleeves can be purchased from a vendor registered with the ADP who have staff trained in the assessment and fitting of compression devices. Contact For detailed information about the program and to access the most current list of vendors and authorizers in your area, call 416-327-8804 or 1-800-2686021 toll free or check the ADP website at www.health.gov.on.ca. Lymphedema Related Costs Lymphedema treatment is not fully covered by Ontario Healthcare. However, government support is only one source of funding patients should explore. Insurance Providers The coverage provided by specific employee based health benefits and private insurance programs varies greatly. Manual lymph drainage is usually reimbursed under the categories of physiotherapy, occu- Fall 2012 The Lymphedema Association of Ontario Resource Guide 11 Top Ten Reasons to Attend Speakers Attend plenary sessions and workshops and hear lymphedema experts such as Dr. Anna Towers, Dr. David Keast, Andreas and Hildegard Wittlinger, Jill Binkley, Margie McNeeley, Robert Harris, and more... Exhibitors Browse the latest products and services available in Canada for lymphedema management in the Exhibit Hall Location Access the conference easily in downtown Toronto at the Courtyard Marriott, just steps from College Subway Station Ethnodrama Watch the Ontario premier of “The New Normal”, a theatrical presentation of breast cancer survivors’ experience with lymphedema Bursaries Apply for funding available to breast cancer patients from the Canadian Breast Cancer Foundation (CBCF)(subject to eligibility) CBCF Luncheon Hear CBCF- funded researcher, Doctor Miles Johnston speak about his latest research Learn Discover the latest developments in lymphedema research and treatment Ask the Expert Direct your questions to international lymphedema experts Network Meet other patients, It’s not too late REGISTER by Oct 24 For more information on conference agenda, prices, and how to register please visit www.lymphontario.ca health professionals and exhibitors Empower Join other patients and health professionals dedicated to increasing their knowledge of lymphedema and promoting awareness Hosted by 4161 Dundas Street West Toronto, Ontario M8X 1Y2 416-410-2250 416-236-7604 (f) Lead sponsor Association québécoise du lymphœdème Lymphedema Association of Quebec L automne 2012 POINTS SAILLANTS DE LA CONFÉRENCE ILF 2012 Pamela Hodgson, Anna Towers, David Keast, Jill Allen, Anna Kennedy, R achel Pritzker Le comité exécutif du Partenariat canadien du lymphoedème (CLF) est heureux de présenter ce rapport incluant les points saillants de la conférence ILF 2012, tenue du 28 au 30 juin à Montpellier (France). Délégués, thérapeutes et praticiens ont pu partager l’espoir lié au fait que les progrès dans la recherche, le diagnostic et le traitement avancent à grands pas .Grâce à la coopération et aux partenariats internationaux, nous pourrons réaliser notre vision commune, à savoir une meilleure prise en charge du lymphoedème dans le monde. Même si certaines des présentations peuvent paraître très scientifiques aux yeux des patients, c’est là le genre de recherche qui est utile pour les personnes souffrant de lymphoedème. Lancement du document sur la thérapie par compression www.lympho.org. L’International Lymphoedema Framework a publié les deux premiers documents d’une série d’études très poussées qui contribueront à la deuxième édition du document sur les pratiques exemplaires. Un résumé des 12 documents prévus, tous réalisés à partir des revues systématiques de la littérature entreprises par l’American Lymphedema Framework Project, sera disponible en 2014. Les documents de positionnement seront disponibles en format pdf sur le site web de l’ILF. Le document sur la thérapie de compression reflète l’état de la recherche, les différentes pratiques cliniques en cours dans le monde, les dernières observations physiologiques ainsi que les changements intervenus dans la façon de voir les choses. Les données probantes actuelles confirment que la compression est l’élément le plus important dans le traitement du lymphoedème mais elle ne doit pas gêner le fonctionnement ou la mobilité générale du patient. Trois nouveaux arguments ont été particulièrement Encart de l'Association Québécoise 1) duon Lymphoedème intéressants pour les thérapeutes: réalise rarement les profils de compression graduée selon la Loi de Laplace, 2) les approches traditionnelles utilisées pour remplir les plis cutanés accentués peuvent Trois nouveaux arguments ont été particulièrement intéressants pour les thérapeutes: 1) on réalise rarement les profils de compression graduée selon la Loi de Laplace, 2) les approches traditionnelles utilisées pour remplir les plis cutanés accentués peuvent produire une pression négative, et 3) un capitonnage de mousse excessif réduit la compression appliquée sur le membre. Les effets de la compression sur les systèmes circulatoires lymphatique et vasculaire laissent penser que l’on peut utiliser la compression chez les patients avec artères compromises. Une présentation a porté sur les concepts de pression et de rigidité et sur le mode d’action de différents types de matériaux. Document de positionnement sur les interventions chirurgicales pour le lymphoedème Les thérapies décongestives conservatrices restent la norme dans le traitement du lymphoedème. Cependant, en cas d’échec, la lipectomie assistée par succion (CSAL) ou liposuccion peut être efficace et sans danger si elle est exécutée par un chirurgien spécialement formé. L’application, immédiatement après l’intervention et dans la salle d’opération, ainsi que le maintien en place, pendant 48 heures, d’un vêtement de compression prémesuré est un facteur essentiel d’après nous. Après l’opération, les vêtements de compression doivent être portés continuellement et à vie. Les techniques de microchirurgie, telles que l’anastamose lymphatico-veineuse, nécessitent encore du travail. Aux États-Unis les données probantes en faveur de la chirurgie ne sont pas considérées comme suffisantes pour justifier un remboursement. Traitements émergents et futurs - thérapies géniques et moléculaires Le Dr. Stanley Rockson de l’Université Stanford a parlé de biomarqueurs et de thérapies moléculaires. Voir page 2 Les chercheurs peuvent, à l’aide des biomarqueurs, détecter le lymphoedème au stade 0 ainsi quepage la 1 prédisposition génétique des personnes à risque. Les agents ciblés, par exemple ceux qui augmentent le VEGFR3, peuvent être utilisés contre les anomalies fonctionnelles du lymphoedème. Ces Conférence ILF 2012 cont. de page 1 Les chercheurs peuvent, à l’aide des biomarqueurs, détecter le lymphoedème au stade 0 ainsi que la prédisposition génétique des personnes à risque. Les agents ciblés, par exemple ceux qui augmentent le VEGFR3, peuvent être utilisés contre les anomalies fonctionnelles du lymphoedème. Ces agents peuvent provoquer une lymphangiogénèse qui peut aussi inverser le cours du lymphoedème. Finalement, le Dr. Rockson fait également des recherches passionnantes sur la réaction des processus inflammatoires du lymphoedème aux médicaments anti-inflammatoires qui pourraient ralentir la progression du lymphoedème de stade 2. Pour les informations les plus récentes, prière de consulter ‘Literature Watch’ dans la revue Lymphatic Research and Biology édité par le Dr. Rockson. Application de téléphone intelligent pour mesurer le volume d’un membre Le prix du «travail le plus original» a été décerné à Lachlan McFetridge, étudiant de médecine australien détenteur d’un PhD en génie électronique. Sa présentation intitulée “Photogrammetry for limb volume measurement” (Photogramétrie pour mesurer le volume d’un membre) a montré comment les caméras à haute résolution portables combinées aux techniques d’imagerie par ordinateur pouvaient calculer le volume d’un membre à partir de plusieurs images de ce membre. Des marqueurs sur le membre permettent au logiciel de faire les réglages voulus en cas de changement de distance ou d’angle. M. McFetridge travaille à la mise au point d’une application ingénieuse pour téléphone intelligent, appelée LymphTracker, qui permettrait aux patients de surveiller eux-mêmes le volume d’un membre à l’aide d’un iPhone ou d’un iPad. membre permettent au logiciel de faire les réglages voulus en cas de changement de distance ou d’angle. M. McFetridge travaille à la mise au point d’une application ingénieuse pour téléphone intelligent, appelée LymphTracker, qui permettrait aux patients de surveiller eux-mêmes le volume d’un membre à l’aide d’un iPhone ou d’un iPad. Rôle de la génétique dans la classification du lymphoedème primaire, secondaire et du lipoedème Des études génétiques récentes révèlent l’existence d’une prédisposition à l’oedème chez les personnes qui développent un lymphoedème après un traitement pour le cancer ou après un autre traumatisme. Les mutations de la voie HGF/MET en sont un exemple. Le Dr. Vaughan Keeley du Royal Derby Hospital, au Royaume-Uni, a parlé du rôle de la génétique dans le maintien et la croissance des systèmes, y inclus celui des vaisseaux lymphatiques. Il a dit comment cela pouvait aider à comprendre pourquoi le lymphoedème se développe. Des cliniciens et des généticiens sont en train de mettre au point une classification phénotypique détaillée de syndromes qui incluent le lymphoedème. Nous finirons par disposer de classifications à partir de tests génétiques quand on découvrira plus de mutations génétiques comme, par exemple, la mutation de VEGFR3 dans la maladie de Milroy. Des gènes qui peuvent prédisposer au lymphoedème sont également à l’étude. Voir page 3 Encart de l'Association Québécoise du Lymphoedème page 2 Conférence ILF 2012 cont. de page 2 Modèle de surveillance prospective dans le suivi de patientes avec un cancer du sein L’identification précoce du lymphoedème sous-clinique peut ralentir la progression du lymphoedème mesurée à un an. Nicole Stout, physiothérapeute et chercheure à Bethesda, aux États-Unis, a soutenu qu’un modèle de surveillance pouvait nettement diminuer les coûts de la prise en charge du lymphoedème (modèle de la surveillance à 636$ par an comparé à 3124$ pour une prise en charge traditionnelle). Pour plus de détails et PDF gratuits, consulter le supplément de la revue CANCER, avril 2012, http://onlinelibrary.wiley.com/doi/10.1002/cncr.v118. 8s/issuetoc Avancées dans lutte contre la filariose La filariose lymphatique est une maladie parasitaire tropicale qui mène à un lymphoedème invalidant et à de l’hydrocèle. Il existe quelque 900 millions de personnes à risque dans le monde et 65 millions souffrent de complications. Le Dr Pierre Brantus, de Handicap International, a fait une présentation optimiste sur notre capacité à lutter contre cette maladie dans les pays du tiers monde en faisant de la prévention à l’aide de médicaments antifilariens. L’international Lymphoedema Framework, dans le cadre de son plan stratégique, travaillera en collaboration avec Handicap International sur des événements de sensibilisation mondiaux et sur une étude internationale de la prévalence du lymphoedème. http://www.handicapinternational.org/ 4RAITEMENTS DES LYMPHOEDÒMES PRIMAIRES ET SECONDAIRES $RAINAGE LYMPHATIQUE MANUEL 6ODDER $,- 4ECHNIQUE DE DÏCONGESTION COMBINÏE 4$# -ASSOTHÏRAPIE POUR ADULTES ENFANTS ET BÏBÏS 3OINS ESTHÏTIQUES étude internationale de la prévalence lymphoedème. http://www.handicap-international.org/ du Pressions différentes pour les bras et les jambes, et expansion de l’utilisation de dispositifs de velcro Le Dr Robert Damstra a présenté les observations d’une étude faite en 2011 pour déterminer les pressions optimales dans le bandage de compression à couches multiples. La compression appliquée pour traiter le lymphoedème du bras s’est révélée plus efficace à des niveaux de compression plus bas (3040 mmHg) tandis que pour les jambes un niveau supérieur (40-60 mmHg mais pas plus) a donné de meilleurs résultats. Dans une autre étude, à publier sous peu, le groupe du Dr. Damastra a utilisé le dispositif au velcro Juxtafit pour traiter le lymphoedème dans la phase intensive. Comparé au bandage traditionnel (Trico), le dispositif a permis d’obtenir une réduction plus grande de l’oedème à 2 heures et à 24 heures. Ce système a des niveaux de rigidité dynamique et statique plus bas et est équipé d’attaches auto-adhésives réglables que les patients apprennent à ajuster si nécessaire. http://www.ncbi.nlm.nih.gov/pubmed/22233613 Un modèle de soins pour cas chroniques - une aspiration Plusieurs conférenciers ont été d’avis que le traitement du lymphoedème devrait inclure un modèle pour maladie chronique selon lequel les Voir page 4 en interaction avec des patients éclairés en vue d’obtenir de meilleurs résultats. Robert Damstra a décrit un service néerlandais qui utilise une prise en 3OUTIENS GORGE ET MAILLOTS charge desADAPTÏS soins interdisciplinaires et met l’accent sur la communication, l’autogestion et l’utilisation POUR PROTHÒSES MAMMAIRES d’instruments de mesure pour détecter les améliorations qui sont significatives sur le plan 3OUTIENS GORGE POUR SEINS VOLUMINEUXclinique. Le but visé est l’autogestion encadré par un soutien. En phase aigüe, les patients sont traités dans une clinique spécialisée avant de passer aux soins -ATÏRIEL ET ÏQUIPEMENTS ambulatoires puis à l’autogestion pour les soins MÏDICAUX d’entretien. http://www.lymphormation.org/journal/content/0201 0ROTHÒSES MAMMAIRES _guidelines.pdf 6ÐTEMENTS COMPRESSIFS 4RAITEMENT AQUA LYMPHATIQUE "OULEVARD DE L(ÙPITAL ,OCAL 'ATINEAU 1# *6 4 WWWCLOOUTAOUAISCA Encart de l'Association Québécoise du Lymphoedème page 3 Conférence ILF 2012 cont. de page 3 praticiens du réseau de soins de santé et de la collectivité agiraient en interaction avec des patients éclairés en vue d’obtenir de meilleurs résultats. Robert Damstra a décrit un service néerlandais qui utilise une prise en charge des soins interdisciplinaires et met l’accent sur la communication, l’autogestion et l’utilisation d’instruments de mesure pour détecter les améliorations qui sont significatives sur le plan clinique. Le but visé est l’autogestion encadré par un soutien. En phase aigüe, les patients sont traités dans une clinique spécialisée avant de passer aux soins ambulatoires puis à l’autogestion pour les soins d’entretien. http://www.lymphormation.org/journal/content/020 1_guidelines.pdf Projet pour les enfants souffrant de lymphoedème La Dre Isabelle Quéré et son équipe ont ouvert un camp pour enfants souffrant de lymphoedème et le petit film sur l’expérience des enfants au camp de cette année a été très inspirant (voir l’histoire de Kim Avanthay). L’étude sur la qualité de vie de Christine Moffatt a souligné, une fois de plus, l’impact psychologique aussi bien que physiologique du lymphoedème sur les enfants. Penny Sanderson, une infirmière de la Mercy Health Lymphedema Clinic, à Melbourne en Australie, a parlé de la collaboration et de l’intégration de leurs services pédiatriques avec la clinique du lymphoedème pour adultes en vue d’assurer une transition facile vers le traitement pour adultes. Pendant les congés scolaires, les services tiennent une journée des jeunes pendant laquelle les traitements sont analysés individuellement avec le personnel médical. Des séances d’information et des groupes de soutien pour jeunes d’âges similaires sont prévus ensuite. Elle a rappelé qu’il était important de prendre en compte les questions psychosociales, de prendre le temps voulu pour créer une relation de confiance, de faire preuve de souplesse et de faire participer la personne à son plan de traitement. Il faut laisser le jeune donner le pas tout en encourageant chez lui le sentiment de maîtrise et de pouvoir personnel. Le drainage lymphatique manuel – quelle est sa place dans le traitement du lymphoedème? Est-ce que tous les patients souffrant de lymphoedème devraient recevoir un drainage lymphatique manuel (DLM) dans le cadre de leur thérapie décongestive? Le consensus a semblé indiquer que non: tous les patients n’en ont pas besoin; tous les patients n’y ont pas accès et le traitement est onéreux. Au Royaume uni, pour des questions de remboursement, on est en train de revoir les données probantes sur le DLM dans le traitement Encart de l'Association Québécoise du Lymphoedème traitement du lymphoedème lié au cancer du sein. Dans les publications il est dit que le DLM améliore la fonction contractile lymphatique ainsi que la qualité de vie, diminue la fragilité capillaire et les niveaux de liquide tissulaire mais les données probantes restent, dans l’ensemble, ambigües. D’après Devooght, le DLM, après un évidement axillaire pour cancer du sein, s’il est effectué en plus de l’exercice et de l’éducation, n’aurait pas plus d’effet sur la prévention du lymphoedème que l’exercice et l’éducation seuls. (Abstract: http://www.ncbi.nlm.nih.gov/pubmed/22784598) Forner-Cordero, de son côté, n’a observé aucun effet lié à l’ajout de DLM au bandage de compression multicouches ou à la compression pneumatique intermittente dans les cas du lymphoedème lié au cancer du sein. Le DLM semble plus indiqué pour les oedèmes du tronc, du sein et autres types. Il faudra plus de recherches si on veut déterminer quelle serait la fourchette optimale pour la pression appliquée par les thérapeutes et connaître l’efficacité des différentes méthodes de DLM. Innovations thérapeutiques - pour les personnes à risque et pour celles souffrant de lymphoedème Pour le professeur Neil Piller, il faut promouvoir l’identification pré-opératoire des patients à haut risque ainsi que les technologies et techniques novatrices dans les domaines de l’équipement, des vêtements, de l’exercice ainsi que du traitement holistique des patients souffrant de lymphoedème. L’éducation des patients est cruciale. Il a souligné à quel point il est important de présenter les résultats de nos innovations et de faire une évaluation des coûts/bénéfices. Il a encouragé le recours à des mesures précises, objectives et appropriées de ce que nous faisons, l’utilisation des lignes directrices et documents de concensus internationaux ainsi que la contribution et participation aux bases de données minimales et aux réseaux de recherche internationaux. Dr David Keast, Jill Allen, Anna Kennedy, Pamela Hodgson, Rachel Pritzker, and Dr. Anna Towers page 4 Le lymphoedème de la jambe: perspective du patient et perspective des thérapeutes Par Melissa, Dorit Tidhar et Maureen Adelman Melissa, la patiente, écrit: "A l'âge de 10 ans, on m'a diagnostiqué un sarcome d'Ewing. Cela fait 16 ans que je suis en rémission. Je veux raconter mon histoire ici pour créer une prise de conscience autour du lymphoedème, pour fournir des données aux chercheurs et pour aider les autres patients vivant avec le lymphoedème. Pendant des années j'ai vécu dans la souffrance, une douleur continue. Avec mes parents, nous avons vu des médecins qui n’ont rien pu trouver comme problème. On a fini par nous dire que j'avais une tumeur cancéreuse. J'ai eu à subir une radiothérapie, une chimiothérapie, la perte d'un corps sans marques et la perte de mes cheveux. Je suis passée au travers de mois difficiles de réadaptation et j'ai subi plus d'opérations que je ne peux en compter avec les doigts de mes mains. J'étais enfin en rémission. Il y a un an, j'ai remarqué des changements à ma jambe gauche: douleurs, enflure, puis des blessures au niveau de l'extérieur du mollet et de la hanche. J'étais toujours fatiguée et exténuée, mais je tentais de cacher ma peur: je ne voulais pas gâcher la journée de mon mariage. Quand la douleur est devenue insupportable mon mari a insisté pour m'emmener à l'hôpital. La circonférence de ma jambe gauche dépassait de 10 cm celle de la droite. J'ai été tellement soulagée quand on m'a dit que j'avais une thrombose veineuse profonde sans signe de cancer. Avec des médicaments et des bas de compression, l'enflure a légèrement diminué, mais je me suis sentie découragée. Heureusement, mon docteur a trouvé la Clinique du lymphoedème du Centre universitaire de santé McGill (CUSM). En octobre 2011, j'ai fait la connaissance de la Dre Anna Towers et de son équipe, une physiothérapeute spécialiste du lymphoedème et une ergothérapeute. On m'a prescrit une thérapie décongestive complète (TDC). l'enflure a légèrement diminué, mais je me suis sentie découragée. Heureusement, mon docteur a trouvé la Clinique du lymphoedème du Centre universitaire de santé McGill (CUSM). En octobre 2011, j'ai fait la connaissance de la Dre Anna Towers et de son équipe, une physiothérapeute spécialiste du lymphoedème et un entraineur. On m'a prescrit une thérapie décongestive complète (TDC). C'était encore stressant. Les premières semaines ont été les plus dures, le temps que mon corps s'habitue aux bandages. Parfois je sentais des crampes brûlantes ou des douleurs aiguës autour de la cheville. Je m`étais aussi blessée à la cheville, donc la présence d'un pansement 24h par jour et 7 jours par semaine était difficile à supporter. Parfois, je n’en pouvais plus! En novembre 2011, en plus de la TDC, j'ai commencé la thérapie aqua-lymphatique (TAL). Cependant, les coûts augmentaient. J'étais en congé de maladie, alors mon mari et moi avons appris à pratiquer le massage lymphatique et à appliquer les bandages. Après un mois de divers traitements, ma thérapeute m'a dit que j'avais atteint un plateau et que l'on pouvait à présent prendre mes mesures pour me confectionner un bas de compression sur mesure, mais je voulais réduire davantage le volume de ma jambe." Perspective de l'équipe de la clinique du lymphoedème du CUSM: "Melissa a été réévaluée après un mois de TDC. Les mesures prises par les thérapeutes de TDC indiquaient une certaine stabilisation. Cependant la thérapeute de la TAL a signalé des diminutions de 400 à 500 ml après chaque séance. Melissa ne maintenait pas cette réduction. Les séance. Melissa ne informations des deux thérapeutes maintenait nous ont pas aidés cetteà comprendre que les bandages de compression n'étaient réduction. Les pas efficaces. Nous avons demandé informations à Melissa des de deux nous montrer ses techniques d'autobandage: deux couches thérapeutes nous ont de bandages ont été appliquées sur à une mousse molle aidés comprendre que enroulée du pied à l'aine. Le les système bandages semblait léger de mais on a vu une plaque rouge se former surn'étaient l’aspect compression frontal de la cheville. pas efficaces. Nous avons demandé à Melissa de nous montrer ses techniques d'autobandage: deux couches de bandages ont été appliquées sur une mousse molle enroulée du pied à l'aine. Le système semblait léger mais on a vu une plaque rouge se former sur l’aspect frontal de la cheville. Voir page 8 Encart de l'Association Québécoise du Lymphoedème page 5 UNE SEM AINE AU C AM P POUR ENFANTS par Kim Avanthay Après un long vol transatlantique, nous sommes arrivés à Montpellier, en France et nous avons rencontré les autres familles qui se connaissaient déjà presque toutes des camps précédents. Au total, deux filles et sept garçons de Suède, du Danemark, de France et du Canada étaient venus accompagnés de leurs parents. Les enfants avaient de 6 à 21 ans et mon fils, Austin, était le plus jeune. Même si Austin savait qu'il y aurait d'autres campeurs atteints de lymphoedème, il m'a surprise en demandant à un des garçons pourquoi il portait une manche de compression. Cela m'a ouvert les yeux et a confirmé l'objectif de ce voyage avec Austin: qu'il connaisse d'autres enfants ayant le lymphoedème et qu'il comprenne qu'il n'était pas seul. Au fur et à mesure que nous faisions connaissance avec nos hôtes (International Lymphoedema Framework (ILF), l'Hôpital de l'Université de Montpellier, l'équipe vidéo et les animateurs du camp, Fabienne, Véronique et Florence), je sentais que cela allait être une très belle semaine! Cette équipe allait veiller à tous nos besoins de santé avec des phytothérapeutes, un psychologue, des médecins, des angiologues, des dermatologues, des podologues et des diététiciens. Les études de Casley-Smith 1996 et Ward and al. 2009 rapporté Québécoise que le lymphoedème pourrait, Encart de ont l'Association du Lymphoedème chez certaines personnes, être déclenché ou augmenté par le vol. De son côté, Graham 2002 a conclu que les voyages en avion de moins de 4.5 heures seraient à Parmi les sessions d'information, un cours d'autobandage nous a enseigné l'usage de différents produits et techniques. C'était bien de voir Austin prendre l'initiative de faire cela lui-même en suivant les instructions. Avec un peu de pratique, nous pourrions intégrer ceci à notre routine nocturne. La session de soins des pieds a été pour moi très pertinente, car je m'inquiète pour les pieds d'Austin et son absence d'arche. On nous a enseigné la bonne méthode pour couper les ongles d'orteils et on nous a expliqué l'importance d'être chaussé à sa taille. Un podiatre m'a indiqué les points de pression des pieds d'Austin auxquels je dois être attentive. Les enfants ont passé plusieurs heures à s'amuser dans la piscine, à jouer au water-polo ou encore dans les glissades d'eau. Ces activités, en plus de répandre le rire et la bonne humeur, sont thérapeutiques, car l'eau agit comme agent de compression. Le vendredi 29 juin, Austin était excité de fêter son 7ème anniversaire en France. Les familles ont rejoint en tram les délégués de la conférence ILF. Austin a été très ému lorsque tout le monde lui a chanté joyeux anniversaire. Au souper de conférence, on lui a servi un gâteau d'anniversaire avec un feu de Bengale, sous ses yeux écarquillés. Ce fut une finale exceptionnelle d'une semaine qu'Austin n'oubliera jamais. page 6 DE BONNES NOUVELLES DU CÔTÉ DE L'ÉDUCATION SUR LE LYMPHOEDÈME Depuis 1999, l'AQL fait des démarches auprès des gouvernements fédéral et provincial afin d'obtenir un remboursement des traitements. Cette année, le gouvernement du Québec a accordé une subvention à l'AQL afin de lancer le Centre AQL d’information sur la prévention du lymphoedème qui permettra de mieux faire connaître aux professionnels de la santé et aux patients les stratégies de la réduction des risques du lymphoedème. Au Québec on estime à quelque 70 000 le nombre d'hommes, femmes et enfants qui souffrent d’une forme ou une autre de lymphoedème. Environ 25% des survivants du cancer vont souffrir d'un lymphoedème après l’intervention chirurgicale, la chimiothérapie ou la radiothérapie, et on ne connait aucun remède. Si la condition n'est pas traitée, elle peut mener à des infections à répétition ou à l'invalidité. Cependant, seule une minorité de patients atteints de lymphoedème bénéficie de soins adéquats et un grand nombre doit attendre des années avant de trouver un professionnel de la santé qui sait reconnaître les symptômes et peut les orienter là où ils recevront un traitement efficace. La Dre Anna Towers, directrice de la Clinique du lymphoedème du CUSM, explique: "Pour obtenir des résultats positifs chez les patients, il est essentiel d'éduquer les médecins, le personnel infirmier, les physiothérapeutes et autres professionnels de la santé, afin de leur donner les outils de détection précoce et qu'ils puissent ainsi référer les patients adéquatement. Avec une prise en charge rapide et une éducation adéquate sur la réduction des risques et l'autogestion, les personnes vivant avec le lymphoedème peuvent éviter ou réduire les effets débilitants de cette condition." "C'est une étape cruciale pour l'AQL, déclare Rachel Pritzker, présidente de l'AQL. La reconnaissance de l'importance de l'éducation et de la réduction des risques de lymphoedème ainsi que l'engagement de notre gouvernement à soutenir les programmes d'éducation et de formation vont nous permettre de rejoindre tout le Québec et de partager notre savoir et nos ressources avec les professionnels de la santé qui pourront, à leur tour, fournir les traitements dont ont besoin leurs patients pour mener une vie active et gérer efficacement leur lymphoedème." GOOD NEWS ON THE LYPHEDEMA EDUCATION FRONT Since 1999, the LAQ has lobbied the Canadian and Quebec governments to cover treatment and has provided resources and training for professionals and education and support to people living with lymphedema. Finally this year our efforts have paid off. The Quebec government has awarded a grant to the LAQ to initiate The LAQ Information Centre for the Prevention of Lymphedema to further educate health professionals and patients on strategies to reduce the risks of lymphedema. In Quebec, it is estimated that approximately 70,000 men, women and children have some form of lymphedema. Approximately 25% of cancer survivors will develop lymphedema following surgery, chemotherapy or radiation treatment, and there is no known cure. Recurrent infections and disability will occur if the condition is not controlled. Yet only a minority of patients with lymphedema are treated appropriately and many wait years before they find a health professional who can recognize and diagnose their symptoms for effective treatment. “Educating doctors, nurses, physiotherapists and other health care professionals about lymphedema, and providing them with the tools for early detection and referral is essential in achieving positive patient outcomes” says Dr. Anna Towers, Director, MUHC Lymphedema Clinic. “With prompt treatment and education in risk reduction and self management, people living with lymphedema can avoid or reduce the debilitating effects associated with this condition”. “This is a very important milestone for the LAQ”, says Rachel Pritzker, President of the LAQ. “Recognition of the importance of lymphedema education and risk reduction and our government’s commitment to support education and training programs will enable us to expand our reach throughout Quebec to provide the knowledge and resources to healthcare professionals and facilitate the treatment that patients need to live active productive lives and effectively manage their lymphedema.“ Encart de l'Association Québécoise du Lymphoedème page 7 Bottin de resources et conseils pratiques maintenant disponible. Resource Guide & Tip Sheets now available. D eux perspectives… cont de page 5 Deux modifications ont été apportées à la technique de bandage. Afin d'effectuer un système de bandage efficace, nous avons implanté la "loi de Laplace". Une couche de matériau mou et doux a été ajoutée sous le bandage et un protecteur de mousse de 1 cm d'épaisseur est rajouté pour protéger le tibia, le haut du pied et les malléoles, de façon à créer un cône. Afin d’obtenir un bandage rigide et de maintenir une tension égale au cours de toute l'application, les bandages ont d'abord été tendus puis enroulés. La région de la cheville a été bandée en position de flexion, afin d'éviter que les couches de bandages ne s'enroulent en marchant, ce qui causerait encore plus de pression sur le tendon tibial antérieur. Au fil du temps, tel qu'illustré dans le graphique 2, la jambe de Melissa a encore diminué de volume. Certains des résultats obtenus par la TAL se sont maintenus et globalement, Melissa a encore perdu du volume avant de se stabiliser de nouveau. 514-979-2643 / [email protected] Voir les graphiques et photos dans l'article de l'édition principale. Soutien communautaire PROGRAMME DE RETOURS D’APPELS PAR DES THÉRAPEUTES OFFERT PAR L’AQL Depuis 2007, l’AQL offre un service d’information téléphonique et par internet destiné aux personnes désireuses de recevoir des renseignements sur le lymphoedème. Ce programme se veut une continuité de la mission de l’AQL soit de donner de l’information reliée à la réduction de risques ainsi qu’à la gestion du lymphoedème. Que ce soit les professionnels de la santé, les personnes atteintes ou à risque de développer un lymphoedème, un membre de leur famille ou un proche, tous peuvent communiquer avec l’AQL et laisser leurs coordonnées ainsi qu’une brève description du sujet qui les préoccupe. Le message sera ensuite acheminé à un thérapeute bénévole désigné, certifié en DLM/TDC, qui se chargera de retourner l’appel rapidement afin de les renseigner. Un autre moyen que l’AQL a choisi pour sensibiliser le grand public à cette cause et promouvoir les services appropriés pour les personnes atteintes de lymphoedème. Mireille Goyette MT DLM/TDC BÉNÉVOLES DEMANDÉS Aimeriez-vous faire la différence? VOLUNTEERS NEEDED Would you like to make a difference? Nous cherchons d’aide avec: We can use help with: Événements spéciaux/Special events Soutien bureau et téléphone/Help in the office Traduction & rédaction/ Translation & editing Animer groupe d’entraide/ Facilitate groups Graphiques/Graphic design Levée de fonds/ Raising funds Encart de l'Association Québécoise du Lymphoedème Joignez-vous à notre équipe. On a besoin vos talents et votre expertise. Join our team of wonderful people. We can use your special skills and expertise. 514-979-2643 / [email protected] page 8 Atlantic Clinical Lymphedema Network Fall 2012 Therapist making a difference in Newfoundland Teresene Walsh-Oakley is a Registered Massage Therapist (RMT), who specializes in Complete Decongestive Therapy / Manual Lymph Drainage (CDT/MLD), and Myo-Fascial/Scar Tissue release. Her clinic, Pro-Motion Therapeutic Services, is a private practice situated in the New World Fitness Building on Topsail Road in St. John’s, NL. Teresene (Terry) has been a practicing massage therapist since 1999 and a lymphedema therapist since 2004. She is a member of the ACLN (Atlantic Clinical Lymphedema Network), LAO (Lymphedema Association of Ontario), Board Member of NLMTA (NL Massage Therapy Association), CMTA (Canadian Massage Therapy Alliance), and participant in the local Lymphedema Support Group in St. John’s. She is a certified fitter for compression garments, and a certified personal trainer. The CDT/MLD portion of her practice encompasses approximately 50% of the therapy provided to patients. Being the only private practicing lymphedema therapist in the area, Terry consults and works very closely with lymphedema nurse coordinators and therapists throughout Atlantic Canada but especially with colleagues at the Dr. H. Bliss Murphy Cancer Clinic at the Health Science Center in St. John’s. Lymphedema patients are referred through nurse coordinators, physiotherapists, and various doctors for treatment of both primary and secondary symptoms of lymphedema. Terry encourages every patient she works with, provides education, and teaches self management techniques for lymphedema. It has been Terry’s experience that most patients who present with lymphedema symptoms will have Myo-fascial restrictions and/or scartissue as well. Her primary goal for each and every patient is to provide empowerment, education, and encouragement before, during, and especially after each treatment. This promotes a positive experience and enhances quality of life. It truly is a treatment that has a lasting effect on the patient. For additional information, contact Terry at Pro-Motion Therapeutic Services Telephone: 709-747-7766 e-mail: [email protected] ACLN - page 1 Atlantic Clinical Lymphedema Network Fall 2012 Lymphedema Surveillance For lymphedema therapists, it is common knowledge that it is easier to treat lymphedema (LE) that is caught in the beginning phase rather than later after it has progressed. In a randomized controlled trial, Stout (2008) found LE that was identified early through surveillance programs could be well managed and sometimes reversed.(1) A lymphedema surveillance program is one which identifies the individuals who are at risk of developing LE and follows them at regular intervals, in an attempt to recognize early signs and symptoms of swelling. Ideally, presurgical measures should be available at standard anatomical landmarks so that the individual’s (lymphatic normal) baseline arm measurements and weight are recorded. More women are surviving breast cancer and awareness of breast cancer survivorship issues are increasing. Common impairments and functional limitations due to breast cancer treatment include upper extremity motion restriction, fatigue, weight gain, pain, and chemotherapy-induced peripheral neuropathy, as well as lymphedema. Recently in April 2012, a supplement to the journal “Cancer” was published addressing the common impairments that often follow breast cancer treatment. “Supplement: A Prospective Surveillance Model for Rehabilitation for Women With Breast Cancer” includes sixteen articles written by various prominent North American breast cancer researchers.(2) These articles outline the prospective surveillance model, recommend it and discuss implementation strategies as well as patient perspectives. We are fortunate in Saint John, NB to have had a formal breast cancer rehabilitation program for the past three and a half years with lymphedema surveillance as an integral part. Thanks to a grant from the CBCF, education sessions about this type of breast cancer rehab program will be given in four different New Brunswick cities this fall. References 1. Stout Gergich NL, Pfalzer LA, McGarvey C, Springer B, Gerber LH, Soballe P. Preoperative assessment enables the early diagnosis and successful treatment of lymphedema. Cancer. 2008; 112: 2809-2819. 2. Kathryn H. Schmitz, Nicole L. Stout, Kimberly Andrews, Jill M. Binkley and Robert A. Smith et al. Supplement: A Prospective Surveillance Model for Rehabilitation for Women With Breast Cancer. Cancer. 2012;118; S8; 2187–2333. Andrea Tilley, PT CDT St. John, NB Lymphedema Care Program, Capital Health, Halifax, NS The Lymphedema Care program at Capital District Health Authority is located in the Rehab Services Department in the Dickson Building of Victoria General Hospital Site. The client services are provided by an occupational therapist and a physiotherapist who both have certification training in Complex Lymphedema Therapy. This is a multi-faceted program that offers education for those at risk of developing lymphedema; acts as a triage/liaison service for those who wish to access treatment in other parts of the province; and provides treatment to clients experiencing lymphedema. Once a month, an education and screening session is offered to women who have had a diagnosis of breast cancer and are at risk of developing lymphedema post surgery and radiotherapy treatments. Clients are also seen on an individual basis that have lymphedema as a result of cancer for assessment and treatment. Assessment and consultative services are offered to clients/family/physicians regarding lymphedema that is not related to a diagnosis of cancer. Audrey Deveaux, PT Leanne Beaton, BSc OT Halifax, NS ACLN - page 2 Atlantic Clinical Lymphedema Network Fall 2012 We are ready to meet your home healthcare needs with a full Mobile Medical range of products and services. Shoppers Drug Mart Mastectomy Products Compression Products 3430 Joseph Howe Drive In home fitting and delivery at no extra charge Phone: 1(506)738-2351 or 1(800)830-1611 Cell: 1(506)636-1450 Fax:1(506)217-0211 Halifax, NS Ph: (902) 443-6084 Fax: (902) 443-6294 Email: [email protected] Carmel Sullivan Owner/Operator Email: [email protected] Contact the ACLN Shannon Andersen [email protected] (902) 893-5554 ext 2198 ACLN - page 3 Certified Lymphedema Therapists in Atlantic Canada Nova Scotia Shannon Andersen PT Colchester East-Hants, NS 902-893-5554 ext 2198 [email protected] Brenda Baxendale BSc, OT Sydney, NS 902-567-8000 ext 2265 [email protected] Leanne Beaton BSc, OT Halifax, NS, 902-472-2151 [email protected] Heather Lowe MSc, OT Yarmouth, NS 902 742-3542 ext.1288 [email protected] Sandra MacDonald RMT, CDT Halifax, NS 902-421-7549 aj244@[email protected] Natalie Parker PT Colchester East-Hants, NS 902-893-5520 Natalie.Parker@cehha. nshealth.ca Natalie Bourque PT Yarmouth, NS 902 742-3542 ext.1154 [email protected] Julie Skaling PT, CDT Kentville, NS, 902-678-3422 [email protected] Audrey Deveaux PT Halifax, NS, 902-473-2151 Audrey.deveaux@cdha. nshealth.ca New Brunswick Tammy Betts PT, CDT Moncton, NB 506-857-5326 [email protected] Jackie Devoe PT Sydney, NS 902-567-8000 ext 2196 [email protected] Dana Harrison RMT, CDT Kentville, NS, 902-687-3422 [email protected] Christine Johnston PT Truro, NS 902-893-5554 ext 2210 [email protected] Amilyn Kearney BSc,RMT,CLT Sydney NS, 902-539-1218 www.belisanasprings.ca Ramona Kieser BHSc,PT, CDT Sackville, NB, 506-536-8081 [email protected] Myrna King BSc, OT Halifax, NS 902-473-1257 [email protected] Sophie Doiron PT, CDT Moncton, NB 506-862-4100 [email protected] Louise Godin PT, CDT Moncton, NB 506-862-4100 [email protected] Nathalie Hache PT, CDT Lameque, NB 506-344-3419 [email protected] Nicole Hache PT, CDT Caraquet, NB 506-726-2275 [email protected] Marie-Andree Legere PT, CDT Fredericton, NB 506-452-5239 [email protected] Fall 2012 Manon Tardif PT, CDT Campbellton, NB, 506-789-5017 [email protected] Andrea Tilley PT, CDT St. Joseph’s Hospital, St. John, NB 506-632-5510 [email protected] Linda Savoie PT CDT Tracadie-Sheila, NB 506-394-3004 [email protected] PEI Alanna Saulnier PT, CDT Dept. of Physical Medicine Charlottetown, PEI 902-894-2062, [email protected] Newfoundland Heather Buckle PT, CDT Health & Performance, Corner Brook, NL 709-632-2266 [email protected] Beverly Lanning RN, CLT-LANA Regional Lymphedema Nurse Central Heath, NL 709-489-4418 [email protected] Ingrid Lindner RMT, CDT Labrador Massage Therapy Clinic Goose Bay, NL, 709-896-3843 [email protected] Janet Montevecchi RNBN, CDT Breast Screening Centre, St. John’s, NL 709-752-3626 [email protected] Donna Parsons RNNP, CDT Dr. Charles LeGrow Health Centre Port Aux Basque, NL, 709-695-4500 Jean Ann Ryan RNBN, CDT DHBMCC, St. John’s, NL 709-777-8713 [email protected] [email protected] Laine MacKinley PT, CDT St. John, NB 506-648-7981 [email protected] Martina Reddick RN, CDT DHBMCC, St. John’s, NL 709-777-8713 Kimberley Lombard MSc, OT Shelburne, NS 902-875-4144 ext.284 [email protected] Tara Mann PT, CDT Moncton, NB 506-857-5326 [email protected] Teresene Walsh Oakley RMT, CDT Pro Motion Therapeutic Services St. John’s,NL, 709-747-7766 Cynthia Lohnes-Ferrolino BSc,RMT Chester, NS 902-275-8089 ACLN - page 4 [email protected] [email protected]