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the BC Lymphedema Association insert
P R E S I D E N T ’ S M E S S A G EP R E S I D E N T ’ S M E S S A G EP R E S I D E N T ’ S M E S S A G Eby Lucette Wesley, Burnaby, BC
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, treat-ment 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.
You will also find an article
IN THE FLOW - BCLA AUTUMN 2012 Page 1
written by Robert Harris, Director of Dr. Vodder School-International 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 Vodder-trained massage therapists in BC and in particular the following people for their commitment to lymphedema education and BCLA:
Carol Armstrong, RMTGarment fitter, facilitator of the lymphedema program at InspireHealth in Victoria, BCLA volunteer.
Koby Blanchfield, RMTEducator, member of Canadian Lymphedema Framework (CLF) Education Committee, BCLA volunteer.
Catherine DiCecca, RMTEducator, founding member and past President of BCLA.
Denise Drisdelle, RMTFacilitator of the lymphedema program at Inspire Health in Vancouver.
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 Vice-President, 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 flowIs published by the
BC Lymphedema Association
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Too often we forget that the lymphedema story is not just an adult story. The fact that pri-mary lymphedema is a condi-tion one is born with means that there are babies, children and teenagers who also live with lymphedema. Let me in-troduce you to one of them.
Donovan was born into a won-derful family and he was born with Klippel Trenaunay Syn-drome, 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 in-cluded it in the diagnosis. Donovan was only 6 weeks old.
The next step for Donovan was fortunate indeed. He was re-ferred to the Vascular Anoma-lies Clinic at BC Children’s Hos-
DONOVAN’S STORY: DONOVAN’S STORY: DONOVAN’S STORY: Living with Klippel Trenaunay SyndromeLiving with Klippel Trenaunay SyndromeLiving with Klippel Trenaunay SyndromeBy Leona Towers Surrey BC
pital and, at four months old, he was brought to Dr. Courte-manche and his team. Dono-van’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 lym-phatic fluid. It was the accu-mulation of lymphatic fluid that caused his leg and foot to swell. Dr. Courtemanche in-formed them that although lymphedema could not be “cured,” Donovan would re-ceive 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
Page 2 IN THE FLOW - BCLA AUTUMN 2012
PRESIDENT Lucette Wesley
VICE-PRESIDENT VACANT
SECRETARY VACANT
TREASURER Michelle Kinakin
DIRECTORS Lene Tonnisen
Leona Towers
Elliott Weiss
FUNDRAISING VACANT
MEMBERSHIP VACANT
NEWSLETTER Wendy Bowles
WEBSITE Lene TonnisenCyndi Cassidy
Membership is temporarily being managed by Lynn Holloway
For exceptional service and experience for ALL your compression and lymphedema needs
Compression garments - off the shelf & custom madeLymphedema day and night-time garmentsMastectomy supplies, specialty brasLymphapress - sales, rental, onsite pump therapyFull line of home health care products
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Phone: 604-888-8811Toll-free: 1-888-988-5882
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2 locations to serve you - Coquitlam & Burnaby - call for an appt.
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Welcome new members! I = Individual P = Professional C = Corporate
I Beth Brooks VancouverI Sandy Janzen Agassiz
I Heather Parker Surrey
M E M B E R S H I P
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.
F U N D R A I S I N G
IN THE FLOW - BCLA AUTUMN 2012 Page 3
compression bandaging to manage the swelling. A compression garment was pre-scribed. 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 immedi-ate 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 frustra-tion 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 tod-dler is wearing a compression garment!
Parents and grandparents had to learn how to help Donovan into his garment as well as how to wrap his leg with compression ban-dages. They also learned the need to be patient and accepting even when discover-ing that Donovan, driven by discomfort, had removed the bandages. His wise mother recognizes that the habit of wearing com-pression garments/bandages is best achieved when one is young, but it some-times 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, com-pression 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 kindergar-ten, 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 chal-lenge as an opportunity to rise above it.
The relaxed attitude of his family encour-ages 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 gar-ments to allow him to wear thongs by cus-tomizing his garments for full toe exposure!
Donovan hasn’t had any recurrence of cellu-litis. 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 ex-tended family that encourages rather than pampers, empowers rather than overpro-tects 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 ex-periences to make himself the best person he can be.
CORPORATE MEMBERSBACK ON TRACK FITNESS - MOVING BEYOND CANCERJoanne Morgan, 731 W 16th Ave, VancouverTel: 604-787-1494 / [email protected]: www.backontrackfitness.ca
BC CANCER AGENCY - LIBRARIESCovering all five health authoritiesTel: 604-675-8004 / Fax: [email protected] / www.bccancer.bc.ca
BC MEDEQUIP HOME HEALTH CARE LTD2230 Springer Ave, Burnaby, BC V5B 3M7Tel: 604-888-8811 / Toll-Free: [email protected] / www.bcmedequip.com
DR VODDER SCHOOL™ INTERNATIONALPO Box 5121, VictoriaTel: 250-598-9862 / Fax: [email protected] / www.vodderschool.com
LIFECARE MEDICALTara Hashemi - Garment Fitter#130 - 3030 Lincoln Ave, Coquitlam, Tel: [email protected] / www.lifecare1.ca
LYMPHEDEMA DEPOT LTD12 - 111 Fourth Ave, Ste 347, St Catharines, ONTel: 905-687-8500 / [email protected]
MACDONALD’S PRESCRIPTIONS LTD - #32188 W Broadway, VancouverTel: [email protected] / www.unipharm.com
MACDONALD’S PRESCRIPTIONS LTD 746 W Broadway, VancouverTel: [email protected] / www.unipharm.com
MEDICAL TOWER DRUGS#6 - 2151 McCallum Rd, AbbotsfordTel: [email protected]
MASTECTOMY SHOP, TheCindy Loftus, RPN, Garment Fitter#5 - 13665 96th Ave, SurreyTel: 604-581-0089 / [email protected]
SHOPPERS HOME HEALTH CARE#202 - 370 E Broadway, VancouverTel: [email protected]
P R O F E S S I O N A L D I R E C T O R YP R O F E S S I O N A L D I R E C T O R YP R O F E S S I O N A L D I R E C T O R Y
Page 4 IN THE FLOW - BCLA AUTUMN 2012
PROFESSIONAL MEMBERSMARLENE ALLEN , Shoppers Home Health Care709-1301 Main St, PentictonTel: [email protected]
CAROL ARMSTRONG, BA, RMT, EGF-Garment FitterFairfield area, VictoriaTel: 250-598-8004 / Fax: [email protected]
KYLA BECK, RMTGrandview Massage Therapy Clinic#303 - 2730 Commercial Dr, VancouverTel: 604-872-1675 / [email protected]
KOBY (Linda) BLANCHFIELD, RMTCedar Hills Lymphatic & Massage Therapy Clinic9474 - 126th St, Bsmt, SurreyTel: 604-589-2291 / [email protected]
SHAWNA BOND, Breast Health NavigatorBreast Health Centre - Victoria General Hospital1 Hospital Way, VictoriaTel: 250-727-4467 / [email protected]
MELANIE BRANCATO, RMT4560 Waldy Rd, Cowichan BayTel: [email protected]
ELIZABETH CARTER, RMT239 East Valley Dr, SE, Marietta, GA, USATel: 770-565-1608 [email protected]
C JULIE CHATELAIN, RMTMassage Therapy Group#201 - 821 Burdett Ave, VictoriaTel: 250-383-3011 / [email protected]
JESSICA DECKER, RMTJessica Decker Massage Therapy Clinic#313 - 1095 McKenzie Ave, VictoriaTel: 250-580-4210 / [email protected]
GRACE DEDINSKY-RUTHERFORD, RMTNorth Shore Lymphedema Clinic1372 Marine Dr, North VancouverTel: -551-8202 / [email protected]
CATHERINE DICECCA, RMTMillstone Massage Therapy402 Millstone Ave, NanaimoTel: 250-619-4109 / [email protected]
ANGELA DICKSON, RMTAbbotsford Chiropractic & Massage Therapy#220 - 3033 Immel St, AbbotsfordTel: 604-852-5133 / [email protected]
DENISE DRISDELLE, RMT#303 - 2730 Commercial Dr, VancouverTel: [email protected] / www.manuallymphdrainage.ca
GABRIELLA FRIESEN, RMTGrandview Massage Therapy#303 - 2730 Commercial Dr, VancouverTel: 604-872-1675 / [email protected]
HELEN GARFIELD, Garment FitterHealthy Life Garments5864 Gardi Rd, KamloopsTel: 778-220-2269 / [email protected]
SARA HODSONLive Well Exercise Clinic Inc306-1676 Martin Dr, SurreyTel: 604-541-2846 / [email protected]
DIANE LJULJOVIC, RMTNorthview Massage Therapy Clinic#300 - 124 Lonsdale Ave, North VancouverTel: 604-986-3771 / [email protected]
CHRISTINE MILLER, RMTMotion Massage Therapy#210 - 1001 Gibsons Way, GibsonsTel: 604-886-9012 / [email protected]
SONJA REDDEN, PTHealing Rivers Physiotherapy#206 - 1811 Victoria St, Prince GeorgeTel: 250-649-0886 / [email protected]
EVA SHAM, RNVancouver Coastal Health Authority3425 Crowley Dr, VancouverTel: 604-707-3614 / [email protected]
BYRON SHIER, MBA, BSc, OT, CLT-LANA, CHECanadian Lymphedema & Rehabilitation Services, Inc.Tel: 604-566-0824 / Fax: 604-566-0859www.canadianlymphedema.com
DAWN SPARKS, RMTCross Roads Physio & Massage Therapy#350 - 507 W Broadway, VancouverTel: 604-568-1337 / [email protected]
JANET SPRAGUE, BHScPT/LANAKeary Physiotherapy Clinic413 E Columbia St, New WestminsterTel: 604-526-2111 / [email protected]
COLETTE SWAIN, RMT#6D - 530 Horse Lake Rd, 100 Mile HouseTel: [email protected]
LENE TONNISEN, BA (Hon) PE, RMTCertified CDT Therapist & JoViPak Fitter9474 - 126th St, SurreyTel: 604-807-3449 / [email protected]
GWEN VALENTIC-MORRISON, RMTAscension Massage Therapy14939 71st Ave, SurreyTel: 778-991-4263 / [email protected]
LESLIE WILLIAMS, RMT Serenity Wellness Clinic#201 - 636 W Broadway, VancouverTel: 604-879-5995 / [email protected]
ANNUAL MEMBERSHIP FEES
INDIVIDUAL $ 25, 1 copy of PATHWAYS, 1 vote
PROFESSIONAL$ 50, 2 copies of PATHWAYS, 1 voteFREE ADS - 4-lines in Professional Directory of newsletter and on website
CORPORATE$100, 5 copies of PATHWAYS, 1 voteFREE 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
Lymphedema Association of Manitoba—Fall 2012
week set the landscape for an exceptional learning tool.
During the International Lymphoedema Framework conference, a quick present-ation 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 main-tenance 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 per-sonal learning experience. Thank you!!
Notre sincère gratitude à l'ILF, Université de Montpellier, tous les animateurs et les étu-diants qui ont assuré la semaine des activi-tés de long ont été apprécié et bénéfique pour notre propre expérience d'apprentis-sage personnelle.
Je vous remercie!
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 lymph-edema. 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 commu-nicate. 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
International Lymphoedema Children’s Camp by Kim Avanthay
Box 403
Lac du Bonnet
Manitoba
R0E 1A0
lymphmanitoba @yahoo.ca
WEB
www.lymphmanitoba.ca
Lymphedema
Association of
Manitoba
Swelling
with Emotion
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
Fall 2012 Volume 1, Issue 3
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
Lymphedema Association of Manitoba—Fall 2012
Page 2 Swelling with Emotion
International Lymphoedema Children’s Camp (continued from page 1)
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 fascinat-ing. 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 Mont-pellier, and it would have been a shame."
Olivier de Robien (parent)
Bandaging session
Austin, Leo and Soren on the field trip to Epidaure
Writing activity at the camp
Anna, Ludivine, Guillaume, Theo, Marin, Austin and Leo
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
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!”
International Lymphoedema Children’s Camp (continued)
Guillaume, Marin, Arthur and Theo
Camp attendees at the ILF Conference
The children with the camp facilitators at the Gala Dinner
Parents’ table at the Gala Dinner
43 Media’s table at the Gala Dinner
Lymphedema Association of Manitoba—Fall 2012
Page 4 Swelling with Emotion
4th International Lymphoedema Framework Conference Review by Wanda Guenther
The following is a review by Wanda Guenther of her experience while attending the International Lymphoedema Frame-work Conference that was held in Mont-pellier, 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 cur-rent issues important to lymphedema professionals, patients, families, and all those connected to that world. The vari-ous topics were covered via workshops, lectures, and discussions and I have summarized my experience and com-ments of those of which I attended.
Lymphoedema and disability was pre-sented by Pierre Castelein and Pierre Brantus.
The discussion emphasised how expen-sive 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 thera-pists, 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 re-duce 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 ser-vices.
Parents need to work with the profes-sionals and the existing school sys-tem. The school alone can present some challenges, depending on awareness and flexibility of the sys-tem.
Child patients and their siblings typi-cally 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 in-vested in one child, such as jealousy and envy.
Parental conflict associated with tak-ing 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
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 vari-ous adopted coping mechanisms, such as denial, hiding, acting "normal", and emotional distance. Some healthy re-sponses can include acceptance and meeting other teens with a similar condition.
For parents, coping may include cele-brating small gains, constant comparison (small gains are big), normalizing as much as possible and planning for the future.
Some tough challenges remain on re-ceiving 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 impor-tant 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” presenta-tion.
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 multi-disciplinary 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
suction may be possible. Liposuction is expensive as it is recognized as a treat-ment 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?
There is no breakthrough for daily prac-tice for lymphedema treatment in terms of surgery. Some lymphedema volume reduction with liposuction can be suc-cessful. However, with obesity, liposuc-tion 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 wrap-ping. It is impressive that so much com-passion 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
one of the overheads to start this ses-sion.
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 lymph-edema 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 lymph-edema.
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 discov-ering 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 compas-sion of my colleagues and look forward to continuing our work to better the life of the person living with lymphedema.
wants, keeping in mind that a referral from the oncologist and ongoing dia-logue with the oncologist is essential. The oncologist should know about the treatment as well as the patient response to the treatment.
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 some-thing from everyone that I provide treatment for. Everyone has a different need but the treatment for lymph-edema is the same; providing compres-sion 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 re-moving 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-
Page 5 Volume 1, Issue 3
4th ILF Conference Review (continued)
Disclaimer:The views that are expressed through-out “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 by Katherine Styrchak
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.
I attended the ILF conference in Mont-pellier, 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 lymph-edema from all over the world, getting together and presenting the latest re-search on the care and management of this chronic, often misdiagnosed and misunderstood, condition.
The research presentations were fasci-nating. 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.
Lymphscintigraphy is a test done to trace "large molecules from the inter-stitial space back to the vascular com-partment".1 Essentially, a radioactive tracer is injected into the interstitial space and its uptake by the lymph sys-tem is followed using a gamma camera.2
Lymphfluoroscopy injects a non-radioactive 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 re-ports that bio-impedence detects problems with the lymphatic system eight months before the patient could
detect that something was wrong, and well before measuring circumference and calculating volume were able to show a difference.4
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 pres-sure, 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 pro-portion 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 respon-sible for certain kinds of primary lymph-edema was incredible news. With VEGF-C mutations, “lymphedema is due to low-grade inflammation caused by de-creased clearance of inflammatory mediators secreted by immune cells
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 lymph-edema 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 se-quences, getting excited about ongoing research and potential results. But it is always about the people. It was inter-esting to hear patients’ different ways of managing their condition and under which circumstances they would "cheat". Therapists would call this "non-compliance"; patients view it as "living and trying to fit in".
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 af-fected 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 ask-ing 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)
Breast Cancer Lymphedema
Support Group
Meets in Winnipeg at 6:30 p.m.
On the third Tuesday
of the month
EMAIL:
You can also find us
on FacebookDavid Coburn (actor)
capable of managing his or her lymph-edema, 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 lymph-edema is and the direction in which it is going. The coming months and years are
exciting for the doctors, researchers, and therapists. Nevertheless, one can-not forget the impact lymphedema is having on millions of people and that the field must strive to remain patient-centered in order to improve lives.
1KEELY, Vaughn, The use of lymphscintigraphy in the management of chronic edema, Journal of Lymphoedema, 2006, Vol 1, No 1, pp 42.
2KEELY, Vaughn, The use of lymphscintigraphy in the management of chronic edema, Journal of Lymphoedema, 2006, Vol 1, No 1, pp 42.
3BELGRADO, Jean-Paul, Lymphfluorscopie associee au traitement physique pour le lymphademe, presented at the ILF Conference,Montpellier, France, 2012.
4PILLER, Neil, Review of impact of relationship issues with veins and their pathologies, presented at the ILF Conference,Montpellier, France, 2012.
5PILLER, Neil, Review of impact of relationship issues with veins and their pathologies, presented at the ILF Conference,Montpellier, France, 2012.
6JOHANSSEN, Mads, Peripheral circulation in breast cancer related lymphedema, presented at the ILF Conference, Montpellier,France, 2012.
7COUPE, Marlene, Éducation thérapeutique du patient. Presented at the ILF Conference, Montpellier, France, 2012.
8COUPE, Marlene, Éducation thérapeutique du patient. Presented at the ILF Conference, Montpellier, France, 2012.
The International Lymphoedema Children’s Camp Participants included:
Austin AvanthayTheo BortolottiAnna De Robien
Marin DumasLudivine Fuster
Soren JeppessenChristopher JohanssonGuillaume Marchand
Leo Terninck
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!!
Lymphedema Association of Manitoba—Fall 2012
Lymphedema
Association of
Manitoba
Page 8
Resource Guide
Swelling with Emotion
DISCLAIMERBusinesses 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, MBphone: 204 452-2608
Fall 2012 The Lymphedema Association of Ontario Resource Guide
Knowledge is power
Annual Resource Guide A special edition of Lymphedema Matters
Volume 15 Issue 3 Fall 2012
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
Welcome to the 5th Edition of our Annual Fall Resource Guide.
Navigating through the maze of obtaining a diagnosis, treatment, and reimbursement for lymph-edema 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.
We hope you will find the compila-tion of information helpful and en-courage you to share this guide with your colleagues, family mem-bers, 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 an-other step forward. Lymphedema care in many countries is beginning to follow a chronic disease model - that of self-education, self-monitoring and self-management.
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.
Shannon Moore (left), Outreach and Event Planner and Anna Kennedy (right), Executive Director
2 Resource Guide The Lymphedema Association of Ontario Fall 2012
Disclaimer: The LAO does not guarantee, warrant or endorse any product or service advertised in this publication.
Fall 2012 The Lymphedema Association of Ontario Resource Guide 3
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
International Saskia Thiadens RN CDT
United States-NLN Shetty Lee MD
Austria-Wittlinger Clinic Neil Piller PhD
Australia-Flinders University
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
4161 Dundas Street West Toronto, Ontario M8X 1Y2 Toll Free: 1-877-723-0033
Fax: (416) 236-7604 [email protected]
www.lymphontario.ca
Charitable Registration Number 87165 5049 RR0001
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 lymphe-dema therapy by combining princi-ples 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 with-out increasing swelling. The buoy-ancy 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 wa-ter which increases lymph and ve-nous return (similar to the effect of a compression garment).
ALT involves self-treatment in a group setting. Participants are en-couraged 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 pro-vided with the tools they need to carry out self-treatment at their convenience and the physiothera-pist 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
Clinical Guidelines
Aqua Lymphatic Therapy
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
ISL Consensus Document on the Diagnosis and Treatment of Peripheral Lymphedema (2009) http://www.u.arizona.edu/~witte/2003consensus.pdf
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
TIP: set your internet browser to automatically update you on any lymphedema related news through
Google Alert
4 Resource Guide The Lymphedema Association of Ontario Fall 2012
Lymphedema Certified Therapists (CDT) Barrie/Orillia Cathy Petzoldt PT 705-794-3772 [email protected]
Beaverton 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
Burlington Kimberly Boersen-Gladman RMT 905-332-6542 www.headtofootoasis.ca
Ramona Herman RMT ALT 905-319-2454 [email protected]
Carlos Ospina, D. Ac. MLD 647-705-8995 info@ carlosospinahealthsolutions.com Durham Region Jason Mandalentsis RMT ALT 289-388-6080 [email protected]
Phyllis Christian RMT 905-721-3828 Mobile Therapist (Durham Region)
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]
Hamilton Donna Lue Reise RN LANA 905-385-3176 or 905-523-4999 [email protected]
Maureen Sawyer RPT 905-389-086 [email protected] www.msphysio.ca
Kingston/Brockville 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]
Janet Millward RMT Ayr, Ontario 519-632-9991 [email protected]
Crystal Sivill RMT 519-772-1010 [email protected]
Swelling Solutions 519-749-0102 www.lymphcare.com Catherine Burt RN, RMT ALT Melody Southgate RMT Rachelle Wright RMT CK ALT
London Helen Murray RN Lymphcare Centre 519-913-0181 [email protected]
Midland/Penetang 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]
Mississauga Nancy Scagnetti RN RMT ALT Mobile Therapist 905-607-8422 [email protected]
Kimberly Tweedie RMT 416-569-5349 [email protected]
Newmarket Rebecca Wilkinson RMT ADP ALT 905-830-9700 www.rebeccawilkinsonrmt.com
North Bay Susan Woodman RMT LANA 705-497-0683 [email protected]
Oakville Caroline Bieze RMT LLCC 905-339-3950 www.iahp.com/cbieze
Nancy Shoemaker RN RMT LLCC CDT 905-465-2929 [email protected]
Ray Vickers RMT CK Oakville/Milton 905-699-3451 [email protected]
Orillia Anne Dockendorff RMT 705-327-0457 [email protected]
Oshawa/Port Perry Heather Cirone PT Park Road Physio 905-438–1500 [email protected]
Susan Sweetapple RMT 905-903-3850 [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]
Fall 2012 The Lymphedema Association of Ontario Resource Guide 5
Owen Sound Danuta Valleau PT 519-534-1788 [email protected]
Sharon Evans ALT Kinexions 519-371-8314 [email protected]
Peterborough Janice Simmonds RMT Ashburnham Massage 705-876-8561
Pickering Anne-Marie Craigen RMT 416-616-8672 [email protected]
Richmond Hill Sophia Finkel HD RMT 416-318-4135 Toronto & Richmond Hill 267 Finch Ave & 8905 Bathurst St
St.Catharines 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]
Toronto Sylvia Crowhurst RMT 416-537-3555 www.lymphaticdrainage.ca
Lindsay Davey PT Toronto Physio 416-792-5115 www.torontophysiotherapy.ca
Marnie Gallant RMT 416-732-5218 or 416-482-4476 [email protected] (Mobile)
Sasha Goudriaan RMT 416-523-8364 [email protected]
Pam Hammond RMT 416-928-9650 Spadina & Bloor Massage Therapy Clinic
Veronica Lelchuk RMT 416-315-0640 [email protected]
Nadine Maraj-Nyiri RMT Mobile Therapist 416-569-2280 [email protected] Petra Norris RN 416-841-3119 Toronto and Etobi-coke [email protected]
Catherine Paterson RMT [email protected] 647-351-2222 Yonge/Eglinton
Jo-Anne Racette RMT 416-465-8179 www.massageondanforth.com
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 certifica-tion. 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).
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 Monica McCarron RMT ALT 905-305-1411 www.labalaba.ca
Waterloo 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
6 Resource Guide The Lymphedema Association of Ontario Fall 2012
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 Centre Victoria Hospital London
Linda Evans, PT Gwen St. John
519-685-8117 519-685-8051 (fax)
Primary and secondary LE patients, referred by physician
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
Louise Sylvestre, PT 705-474-8600 Ext. 4843
Laura Lake, PT 705-474-8600 Ext. 4846
Primary and secondary LE with referral
Physiotherapy assessment, ADP authorizer, compression bandaging, education, pump
Sudbury Regional Hospital * Sudbury
Physiotherapy
705-522-6237 Ext. 2175
Secondary LE only with referral from health care professional or self referral
Assessment, ADP, education, MLD, pump
Thunder Bay Regional Health Science Centre Thunder Bay
Leona DiCasmirro, PT/CDT
807-684-6270 Urgent: 807-624-4479
Inpatient and outpatient (designated to cancer patients)
Assessment, education/prevention, treatment (MLD), bandaging, ADP, garment fitting and follow-up education
Odette Regional Cancer Centre—Sunnybrook Health Sciences Centre Toronto
Neda Soltani, RN Susan Bowles, RN Ingrid White, RN
416-480-5000 Ext. 81406
Secondary LE patients of the Odette Cancer Centre
Assessment, ADP, education, refer out for MLD
Princess Margaret Hospital Toronto
Stephanie Phan, OT PMH Survivorship Program—Lymphedema
Acting Clinical Lead 416-946-4501 Ext. 5267
UHN out-patients with LE—upper ex-tremity and upper body or gynce-cological secondary to cancer
Lymphedema Clinic: assessment, ADP, group education and customized individual plan for learning lymphedema self-management, refer out for MLD, skills refresher course
Fall 2012 The Lymphedema Association of Ontario Resource Guide 7
Lymphedema Support Groups
Hospital Contact Referral Base
SickKids - The Hospital for Sick Children Toronto
Pamela Hilliard, PT
416-813-6755 Ext. 0
Upper and lower extremity LE (mostly primary), children under 18
St. Joseph’s Health Centre Toronto
Marie Eason Klatt, OT
416-530-6058 Ext. 3550
Primary and secondary LE within en-catchment 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 secon-dary LE patients
Diagnosis, ADP authorizer, assessment for pump, refer out to CCAC for compression bandaging
Windsor Regional Hospital Windsor
Adriana Golob, PT
519-257-5207 Ext. 72301
Primary and secondary LE patients
Group education classes (one session per month)
Women’s College Hospital * Toronto
Naffisa Nathwani, OT Tania Obljubek, PT
416-323-6400 Ext. 4414
Secondary LE, breast cancer patients at Women’s College Hospital
Assessment, ADP, education, bandaging, initial compression and MLD, refer out for MLD maintenance phase
Assessment, monitoring, education, ADP authorizer, compression recommendations/bandaging, refer out for MLD
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
Brantford 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)
Kingston The group meets 5 or 6 times a year between Septem-ber 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
Waterloo region meets monthly in the Victoria Room, Victoria Place, 290 Queen Street South, Kitchener on the last Tues-day 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
Oshawa 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
Ottawa Workshops-Learn the facts about secondary lymphe-dema, how to self-monitor, important lifestyle recom-mendations, when and where to go for help and exer-cises 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.
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.
8 Resource Guide The Lymphedema Association of Ontario Fall 2012
Become a Corporate Member and promote your services here and on our website.
Corporate Members Local Fitters
Coulter’s Pharmacy London www.coulterspharmacy.com
519-451-0750
Dell Pharmacy www.dellpharmacy.com
Local area numbers available online
Frans Boutique Cambridge www.fransmascetomyboutique.ca
1-877-206-3936
Mansueta Medical Garments Toronto 416-591-0006 700 University Avenue
McNiece T.E.N.S. Inc. SW Ontario
www.mcniecetens.ca 1-800-681-8367
Renaissance Woman Georgetown
www.youngspharmacy.com 905-877-2711
ShoppersHomeHealth Care
www.shoppershomehealthcare.com Local area numbers available online
The Nu Me Boutique Kitchener
www.numeboutique.com 1-800-513-9379
Yurek Home Health London
www.yurekpharmacy.com 519-963-1142
Manufacturers/Dealers
3M Canada www.3m.com
1-800-265-1849
Bauerfeind www.bauerfeind.com
1-877-629-9889
BSN Medical - Jobst Inc. www.jobst.com 1-800-537-1063
Canadian Bandage Shoppe www.cdnbandageshop.com
306-757-7173
Farrow www.farrowmedical.com
1-877-417-5187
JoviPak www.jovipak.com 1-866-888-5684
Juzo
www.juzo.com 1-888-255-1300
Linotrade Ltd.
www.lympholino.com 514-846-1280
Lymphedema Depot
www.lymphedemadepot.com 905-687-8500
Lymphedivas
www.lymphedivas.com 1-855-411-3482
Paradigm Medical Inc. www.paradigmmed.com
1-800-931-2739
Pascoe Canada www.pascoecanada.com
1-866-535-0099
Sigvaris Website
1-800-363-4999
Valco/Mediven www.valco.ca
1-800-361-3153
Venosan www.venosan.ca 613-727-3968
Educators Academy of Lymphatic Studies
www.acols.com 1-800-863-5935
Dr. Vodder School Inter-
national www.vodderschool.com 250-598-9862
Norton School of Lymphatic
Therapy www.nortonschool.com 1-866-445-9674
We encourage all our readers to visit the websites of our
Corporate Members.
Fall 2012 The Lymphedema Association of Ontario Resource Guide 9
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 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
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
Donation Amount $250 $100 $50 $25 Other ___________ Total Payment ______________
Corporate Listing $250 n/a Manufacturers and retailers; includes listing and website link on LAO’s marketplace website plus listing in annual fall Resource Guide.
□ 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 416-236-7604
Charity Challenge and Fundraising
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
The Lymphedema Association of Ontario receives no government funding and relies solely on member-ships and donations to provide programs and ser-vices such as our telephone help line, annual confer-ence, 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 mem-bers 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 map-ping 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.
10 Resource Guide The Lymphedema Association of Ontario Fall 2012
Books
CDs/DVDs Vodder School International- Instructional 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)
Knowledge is the first step to
managing your lymphedema
successfully
Build your lymphedema library
Contact us for the largest selection of lymphedema books
www.lymphontario.ca
Websites 100 Questions and Answers About Lymphedema Saskia Thiadens, Paula Stewart, Nicole Stout (2009)
A Leg Up! On Lymphedema Courtney Blair Day (2009)
Coping With Lymphedema Joan Swirsky (1998)
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)
American Lymphedema Framework Project www.alfp.org
Breast Cancer Action Ottawa www.bcaott.ca/lymphedema/info
Canadian Lymphedema Framework www.canadalymph.org
International Lymphoedema Framework www.lympho.org
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
Fall 2012 The Lymphedema Association of Ontario Resource Guide 11
Financial Assistance ADP-Assistive Devices Program
Compression garments and sleeves for chronic lymph-edema and extremity pumps for primary lymphe-dema 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 reg-istered 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 gen-eral surgery. A General Practitioner in Oncology (GPO) may also provide his assessment. On an ongo-ing basis your family physician can complete the ADP assessment form required every two years.
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 com-pression devices.
Contact For detailed information about the program and to access the most current list of vendors and authoriz-ers in your area, call 416-327-8804 or 1-800-268-6021 toll free or check the ADP website at www.health.gov.on.ca.
Lymphedema Related Costs
Lymphedema treatment is not fully covered by On-tario 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 var-ies greatly. Manual lymph drainage is usually reim-bursed under the categories of physiotherapy, occu-
pational therapy, registered massage therapy or some-times 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.crs-arc.gc.ca and check under forms and publication - Bulle-tin IT519R2—CONSOLID—Medical Expense and Disabil-ity 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.
Lead sponsor
Hosted by
4161 Dundas Street West Toronto, Ontario M8X 1Y2 416-410-2250 416-236-7604 (f)
Learn Discover the latest developments in lymphedema research and treatment
Network Meet other patients, health professionals and exhibitors
Empower Join other patients and health professionals dedicated to increasing their knowledge of lymphedema and promoting awareness
Exhibitors Browse the latest products and services available in Canada for lymphedema management in the Exhibit Hall
CBCF Luncheon Hear CBCF- funded researcher, Doctor Miles Johnston speak about his latest research
Ethnodrama Watch the Ontario premier of “The New Normal”, a theatrical presentation of breast cancer survivors’ experience with lymphedema
Ask the Expert Direct your questions to international lymphedema experts
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...
Bursaries Apply for funding available to breast cancer patients from the Canadian Breast Cancer Foundation (CBCF)
Location Access the conference easily in downtown Toronto at the Courtyard Marriott, just steps from College Subway Station
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
Top Ten Reasons to Attend
(subject to eligibility)
Association québécoise du lymphœdème Lymphedema Association of Quebec L’automne 2012
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 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
Encart de l'Association Québécoise du Lymphoedème page 1
POINTS SAILLANTS DE LA CONFÉRENCE ILF 2012 Pamela Hodgson, Anna Towers, David Keast, Ji l l Al len, Anna Kennedy, Rachel Pritzker
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 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
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 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.
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.handicap-international.org/
étude internationale de la prévalence du lymphoedème. http://www.handicap-international.org/
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 (30-40 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 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/0201_guidelines.pdf
Encart de l'Association Québécoise du Lymphoedème page 3
Encart de l'Association Québécoise du Lymphoedème page 4
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
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/0201_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 page 5
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 informations des deux thérapeutes nous ont aidés à comprendre que les bandages de compression n'étaient 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.
Le lymphoedème de la jambe: perspective du patient et perspective des thérapeutes
séance. Melissa ne maintenait pas cette réduction. Les informations des deux thérapeutes nous ont aidés à comprendre que les bandages de compression n'étaient 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 6
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.
UNE SEMAINE AU CAMP 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 ont rapporté que le lymphoedème pourrait, 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 faible risque et que le fait d’utiliser un vêtement
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.“
GOOD NEWS ON THE LYPHEDEMA EDUCATION FRONT
Encart de l'Association Québécoise du Lymphoedème page 7
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."
DE BONNES NOUVELLES DU CÔTÉ DE L'ÉDUCATION SUR LE LYMPHOEDÈME
Encart de l'Association Québécoise du Lymphoedème page 8
Deux 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.
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
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]
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
BÉNÉVOLES DEMANDÉS VOLUNTEERS NEEDED Aimeriez-vous faire la différence? Would you like to make a difference?
Bottin de resources et conseils pratiques
maintenant disponible. Resource Guide & Tip Sheets now available.
514-979-2643 / [email protected]
ACLN - page 1
Fall 2012
Atlantic Clinical Lymphedema Network
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 scar-tissue 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 2
Atlantic Clinical Lymphedema Network Fall 2012
Lymphedema SurveillanceFor 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, pre-surgical 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.
References1. 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 CDTSt. John, NB
Lymphedema Care Program, Capital Health, Halifax, NSThe 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 3
Atlantic Clinical Lymphedema Network Fall 2012
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Contact the ACLNShannon Andersen
[email protected](902) 893-5554 ext 2198
ACLN - page 4
Certified Lymphedema Therapists in Atlantic Canada Fall 2012
Nova Scotia
Shannon Andersen PT
Colchester East-Hants, NS
902-893-5554 ext [email protected]
Brenda Baxendale BSc, OTSydney, NS902-567-8000 ext [email protected]
Leanne Beaton BSc, OTHalifax, NS, [email protected]
Natalie Bourque PTYarmouth, NS902 742-3542 [email protected]
Audrey Deveaux PTHalifax, NS, [email protected]
Jackie Devoe PTSydney, NS902-567-8000 ext [email protected]
Dana Harrison RMT, CDTKentville, NS, [email protected]
Christine Johnston PTTruro, NS902-893-5554 ext [email protected]
Amilyn Kearney BSc,RMT,CLTSydney NS, 902-539-1218www.belisanasprings.ca
Ramona Kieser BHSc,PT, CDTSackville, NB, [email protected]
Myrna King BSc, OTHalifax, NS [email protected]
Cynthia Lohnes-Ferrolino BSc,RMTChester, [email protected]
Kimberley Lombard MSc, OTShelburne, NS902-875-4144 [email protected]
Heather Lowe MSc, OTYarmouth, NS902 742-3542 [email protected]
Sandra MacDonald RMT, CDTHalifax, NS902-421-7549aj244@[email protected]
Natalie Parker PTColchester East-Hants, [email protected]
Julie Skaling PT, CDTKentville, NS, [email protected]
New BrunswickTammy Betts PT, CDT Moncton, NB [email protected]
Sophie Doiron PT, CDTMoncton, [email protected]
Louise Godin PT, CDTMoncton, [email protected]
Nathalie Hache PT, CDTLameque, [email protected]
Nicole Hache PT, CDTCaraquet, [email protected]
Marie-Andree Legere PT, CDTFredericton, [email protected]
Laine MacKinley PT, CDTSt. John, [email protected]
Tara Mann PT, CDTMoncton, [email protected]
Manon Tardif PT, CDTCampbellton, NB, [email protected]
Andrea Tilley PT, CDTSt. Joseph’s Hospital, St. John, [email protected]
Linda Savoie PT CDTTracadie-Sheila, [email protected]
PEIAlanna Saulnier PT, CDTDept. of Physical MedicineCharlottetown, PEI 902-894-2062, [email protected]
NewfoundlandHeather Buckle PT, CDT Health & Performance, Corner Brook, NL [email protected]
Beverly Lanning RN, CLT-LANARegional Lymphedema NurseCentral Heath, [email protected]
Ingrid Lindner RMT, CDTLabrador Massage Therapy Clinic Goose Bay, NL, [email protected]
Janet Montevecchi RNBN, CDTBreast Screening Centre, St. John’s, [email protected]
Donna Parsons RNNP, CDTDr. Charles LeGrow Health CentrePort Aux Basque, NL, 709-695-4500
Jean Ann Ryan RNBN, CDTDHBMCC, St. John’s, NL [email protected]
Martina Reddick RN, CDTDHBMCC, St. John’s, [email protected]
Teresene Walsh Oakley RMT, CDTPro Motion Therapeutic Services St. John’s,NL, [email protected]
