president`s message - Lymphedema Association of Saskatchewan



president`s message - Lymphedema Association of Saskatchewan
the BC Lymphedema Association insert
by Lucette Wesley, Burnaby, BC
Since the last edition of
Pathways, the BCLA Board has
held a strategic planning
It gave us the
opportunity to look at where
we have come from, celebrate
our accomplishments, review
and evaluate where we are
now, and plan our direction for
the next few years.
Fatima Inglis,
our VicePresident, announced at this
meeting that she will be
stepping down from the Board
at the end of the summer.
Although she will not be on the
Board of the BCLA, she will still
be actively involved in the
lymphedema community and
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
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
consultations from the Physical
Medicine & Rehabilitation
Specialist and physiotherapists.
Services will include medical
diagnosis, assessment, treatment recommendations and
education. These are exciting
changes for the lymphedema
community in BC.
As you all know, we are a
volunteer Board and we need
to be realistic about what we
can accomplish. In reviewing
our strategic plan, we identified
that we need to strengthen our
Board of Directors and to have
a succession plan in place for
the future. We are actively
seeking new Board Members,
and will need to be prepared to
elect both a new Vice-President
and Secretary in the Spring.
Even if you do not reside in the
lower mainland, we can arrange
to hold meetings by Skype or
conference call. We encourage
anyone who has an interest and
desire to help us continue our
work to apply for a Board
position. We are a working
board, so you will be expected
to volunteer a few hours a
week and be available for six
meetings a year. You would
also be expected to help
organize our annual conference
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
2) identify and implement
ways to educate primary
care physicians,
3) organize
educational events,
4) continue
Pathways magazine.
You will find this edition of
Pathways full of educational
developments from the 2012
ILF conference in Montpellier,
written by Robert Harris,
Director of Dr. Vodder SchoolInternational in Victoria and
BCLA member. In his article,
Robert focuses on the impact
that massage therapists have
had on the management of
We would like to take this
opportunity to extend our
thanks to ALL the Voddertrained massage therapists in
BC and in particular the
following people for their
commitment to lymphedema
education and BCLA:
Carol Armstrong, RMT
Garment fitter, facilitator of the
lymphedema program at
InspireHealth in Victoria, BCLA
Koby Blanchfield, RMT
Educator, member of Canadian
Lymphedema Framework (CLF)
Education Committee, BCLA
Catherine DiCecca, RMT
Educator, founding member
and past President of BCLA.
Denise Drisdelle, RMT
Facilitator of the lymphedema
program at Inspire Health in
Vancouver. 
You will also find an article
Page 1
DONOVAN’S STORY: Living with Klippel Trenaunay Syndrome
By Leona Towers Surrey BC
in the flow
Is published by the
BC Lymphedema Association
Nov 09/12
Feb 08/13
May 10/13
We welcome your ideas, contributions, and letters. They
will be subject to editing and
available space.
Contact us for rates and sizes
for this insert if you are a BC
advertiser. National advertisers contact Anna Kennedy at
[email protected] or 416410-2250.
The BCLA does not guarantee,
warrant or endorse any products or services advertised in
this publication. The views
expressed do not necessarily
represent the views of the
BCLA, its Board of Directors or
Mailing Address:
#215 - 5589 Byrne Rd
Burnaby, BC V5J 3J1
[email protected]
Too often we forget that the
lymphedema story is not just an
adult story. The fact that primary lymphedema is a condition one is born with means
that there are babies, children
and teenagers who also live
with lymphedema. Let me introduce you to one of them.
Donovan was born into a wonderful family and he was born
with Klippel Trenaunay Syndrome, or in layperson’s terms,
a port wine stain. It is a genetic
mutation that causes a purple
mark on the surface of the skin,
frequently on the face, but in
Donovan’s case, on one of his
legs. It soon became apparent
that this condition went beyond
the surface to include vascular
and lymphatic complications.
Donovan was only four days old
when his leg began to swell
from the knee down into his
foot. His pediatrician referred
him to a dermatologist who,
thankfully, was knowledgeable
about lymphedema and included it in the diagnosis.
Donovan was only 6 weeks old.
The next step for Donovan was
fortunate indeed. He was referred to the Vascular Anomalies Clinic at BC Children’s Hos-
pital and, at four months old,
he was brought to Dr. Courtemanche and his team. Donovan’s family learned that in his
case, Klippel Trenaunay meant
that under the port wine stain
was a longer leg bone as well
as extra tissue, fat and lymphatic fluid. It was the accumulation of lymphatic fluid
that caused his leg and foot to
swell. Dr. Courtemanche informed them that although
lymphedema could not be
“cured,” Donovan would receive treatment to ameliorate
symptoms and manage the
condition as much as possible.
He described the complications
inherent in lymphedema and
advised that a “treat as you go”
approach was best for such a
young patient.
Donovan was an active, happy
baby who brought great joy to
his family as he progressed
through all the usual baby
milestones. However, when he
began walking, the swelling got
much worse where his ankle
was not discernible from his
enlarged leg and foot. When
he was 13 months old, he was
hospitalized with cellulitis. It
took three weeks of antibiotics
to overcome the infection and
Lucette Wesley
TREASURER Michelle Kinakin
Lene Tonnisen
Leona Towers
Elliott Weiss
Membership is temporarily being
managed by Lynn Holloway
Wendy Bowles
Lene Tonnisen
Cyndi Cassidy
Phone: 604-888-8811
Toll-free: 1-888-988-5882
Fax: 778-355-1185
2 locations to serve you - Coquitlam & Burnaby - call for an appt.
For exceptional service and experience for ALL
your compression and lymphedema needs
Compression garments - off the shelf & custom made
Lymphedema day and night-time garments
Mastectomy supplies, specialty bras
Lymphapress - sales, rental, onsite pump therapy
Full line of home health care products
Patricia Montagano, RN, BSN
Certified Lymphedema Consultant, Expert Garment Fitter
[email protected]
Page 2
compression bandaging to manage the
swelling. A compression garment was prescribed. The effectiveness of the garment
was proven when the measurements taken
for ordering this custom toddler garment
were compared to measurements taken
after just three hours of wear - an immediate decrease of a half size!
The challenge was now to convince a toddler
the necessity of wearing that garment and
to keep the compression bandages on at
night. Most people can relate to the frustration of attempting to toilet train a toddler all that on and off with the clothes. Imagine
what it must be like to do so when that toddler is wearing a compression garment!
Last Wed
of month
Free lymphedema information
sessions for people with cancer
(past or present) only.
Sep 30/12
In various BC cities
Thank you to the following people who have so
kindly donated to BCLA since our last newsletter.
Eileen Holloway
$10/mo Monthly gift in memory of
Lorraine Warnock, Lynn
Holloway’s mother.
Parents and grandparents had to learn how
to help Donovan into his garment as well as
how to wrap his leg with compression bandages. They also learned the need to be
patient and accepting even when discovering that Donovan, driven by discomfort, had
removed the bandages. His wise mother
recognizes that the habit of wearing compression garments/bandages is best
achieved when one is young, but it sometimes means ‘losing a battle to win the war’.
Donovan’s compression garments may be
small, but that doesn’t mean the cost is.
Each pair is $490 and needs to be replaced
every six months, or more often depending
upon his growth factor. Fortunately, compression garments are fully covered by his
parents’ extended medical plan.
As Donovan grows, the affected leg is
longer, making growth milestones more
difficult for him. Donovan is now an active,
very social five-year old with lots of energy.
He is excited about life and appreciates all it
has to offer. He enjoys going to kindergarten, playing with his cousins and friends, and
sleepovers at Grandma’s. He is big for five,
an attractive boy with dimples when he
smiles and big blue eyes that twinkle with
enthusiasm. Donovan seldom mentions his
leg and never lets it stop him from doing
anything he wants. His family never makes
a big deal of it, so neither does Donovan. He
can become annoyed when people ask him
about his leg, simply because he doesn’t
think it should be a cause for attention. The
very few times he has said, “I hate my leg,”
his family encourages him to use this challenge as an opportunity to rise above it.
The relaxed attitude of his family encourages everyone to treat things as they come
up. When Donovan was reluctant to wear
shorts in kindergarten, his garments were
ordered black so there was no confusion
about him wearing stockings. Now he wears
shorts whenever he can. Donovan wasn’t
enthusiastic about playing soccer, so he tried
skating and discovered that he is good at it.
Now he enjoys playing hockey. He is also
enthusiastic about learning karate and, in
true determined style, Donovan managed to
get his family to figure a way to fit his garments to allow him to wear thongs by customizing his garments for full toe exposure!
Donovan hasn’t had any recurrence of cellulitis. He wears his garment during the day,
and night-time bandaging continues even if
he takes them off at times - the philosophy
being not to make a big deal of it so that he
won’t ever wear them again. Lotion for dry
skin is applied daily. He doesn’t yet undergo
any massage treatment since being still for
that length of time is difficult for someone
his age. The team Donovan sees annually at
the vascular clinic at Children’s Hospital has
grown from the original three to seven
health care professionals, which includes a
nurse who the parents can call at any time
they have a question or concern. Donovan’s
greatest asset is his loving, supportive extended family that encourages rather than
pampers, empowers rather than overprotects and, rather than having him feel sorry
for himself, never let his lymphedema stop
him from doing anything he wants to do.
They are teaching him that rather than to
dwell on his difficulties, he can use his experiences to make himself the best person
he can be. 
Welcome new members!
I = Individual P = Professional C = Corporate
I Beth Brooks
I Sandy Janzen
I Heather Parker
Page 3
Joanne Morgan, 731 W 16th Ave, Vancouver
Tel: 604-787-1494 / [email protected]
MARLENE ALLEN , Shoppers Home Health Care
709-1301 Main St, Penticton
Tel: 250-492-7592
[email protected]
#303 - 2730 Commercial Dr, Vancouver
Tel: 604-872-1675
[email protected] /
Covering all five health authorities
Tel: 604-675-8004 / Fax: 604-675-8009
[email protected] /
Fairfield area, Victoria
Tel: 250-598-8004 / Fax: 250-598-8044
[email protected]
Grandview Massage Therapy
#303 - 2730 Commercial Dr, Vancouver
Tel: 604-872-1675 / [email protected]
2230 Springer Ave, Burnaby, BC V5B 3M7
Tel: 604-888-8811 / Toll-Free: 1-888-988-5882
[email protected] /
Grandview Massage Therapy Clinic
#303 - 2730 Commercial Dr, Vancouver
Tel: 604-872-1675 / [email protected]
HELEN GARFIELD, Garment Fitter
Healthy Life Garments
5864 Gardi Rd, Kamloops
Tel: 778-220-2269 / [email protected]
PO Box 5121, Victoria
Tel: 250-598-9862 / Fax: 250-598-9841
[email protected] /
Cedar Hills Lymphatic & Massage Therapy Clinic
9474 - 126th St, Bsmt, Surrey
Tel: 604-589-2291 / [email protected]
Live Well Exercise Clinic Inc
306-1676 Martin Dr, Surrey
Tel: 604-541-2846 / [email protected]
Tara Hashemi - Garment Fitter
#130 - 3030 Lincoln Ave, Coquitlam, Tel: 604-941-5433
[email protected] /
SHAWNA BOND, Breast Health Navigator
Breast Health Centre - Victoria General Hospital
1 Hospital Way, Victoria
Tel: 250-727-4467 / [email protected]
Northview Massage Therapy Clinic
#300 - 124 Lonsdale Ave, North Vancouver
Tel: 604-986-3771 / [email protected]
12 - 111 Fourth Ave, Ste 347, St Catharines, ON
Tel: 905-687-8500 / [email protected]
4560 Waldy Rd, Cowichan Bay
Tel: 250-748-3351
[email protected]
Motion Massage Therapy
#210 - 1001 Gibsons Way, Gibsons
Tel: 604-886-9012 / [email protected]
2188 W Broadway, Vancouver
Tel: 604-738-0733
[email protected] /
239 East Valley Dr, SE, Marietta, GA, USA
Tel: 770-565-1608
[email protected]
Healing Rivers Physiotherapy
#206 - 1811 Victoria St, Prince George
Tel: 250-649-0886 / [email protected]
746 W Broadway, Vancouver
Tel: 604-872-5496
[email protected] /
Massage Therapy Group
#201 - 821 Burdett Ave, Victoria
Tel: 250-383-3011 / [email protected]
Vancouver Coastal Health Authority
3425 Crowley Dr, Vancouver
Tel: 604-707-3614 / [email protected]
#6 - 2151 McCallum Rd, Abbotsford
Tel: 604-859-7651
[email protected]
Jessica Decker Massage Therapy Clinic
#313 - 1095 McKenzie Ave, Victoria
Tel: 250-580-4210 / [email protected]
Canadian Lymphedema & Rehabilitation Services, Inc.
Tel: 604-566-0824 / Fax: 604-566-0859
Cindy Loftus, RPN, Garment Fitter
#5 - 13665 96th Ave, Surrey
Tel: 604-581-0089 / [email protected]
North Shore Lymphedema Clinic
1372 Marine Dr, North Vancouver
Tel: -551-8202 / [email protected]
Cross Roads Physio & Massage Therapy
#350 - 507 W Broadway, Vancouver
Tel: 604-568-1337 / [email protected]
#202 - 370 E Broadway, Vancouver
Tel: 604-876-4186
[email protected]
Millstone Massage Therapy
402 Millstone Ave, Nanaimo
Tel: 250-619-4109 / [email protected]
Keary Physiotherapy Clinic
413 E Columbia St, New Westminster
Tel: 604-526-2111 / [email protected]
Abbotsford Chiropractic & Massage Therapy
#220 - 3033 Immel St, Abbotsford
Tel: 604-852-5133 / [email protected]
#6D - 530 Horse Lake Rd, 100 Mile House
Tel: 250-706-8765
[email protected]
$ 25, 1 copy of PATHWAYS, 1 vote
$ 50, 2 copies of PATHWAYS, 1 vote
FREE ADS - 4-lines in Professional Directory of newsletter and on website
$100, 5 copies of PATHWAYS, 1 vote
FREE ADS - 4-lines in Professional Directory of newsletter and on website
FREE - Available by special request for people with lymphedema who find the membership fee
prohibitive, no voting privileges
Page 4
Certified CDT Therapist & JoViPak Fitter
9474 - 126th St, Surrey
Tel: 604-807-3449 / [email protected]
Ascension Massage Therapy
14939 71st Ave, Surrey
Tel: 778-991-4263 / [email protected]
Serenity Wellness Clinic
#201 - 636 W Broadway, Vancouver
Tel: 604-879-5995 / [email protected]
Fall 2012
Volume 1, Issue 3
Association of
with Emotion
International Lymphoedema Children’s Camp
This issue of Swelling with Emotion is
dedicated to the 4th International
Lymphoedema Framework Conference and
the International Lymphoedema Children’s
Camp which was held in Montpellier,
France in June 2012.
I personally attended the children’s camp
with my son Austin and I have to say, it was
the most amazing experience; one that
Austin and I will not forget.
For me, it was all about Austin. I wanted
Austin to meet other kids with lymphedema. I wanted him to see that there are
other children out there that have the same
condition as him. I wanted him to know
that he was not alone and that there are
others, older children, that he can talk to.
Austin was so happy to meet the other
children. Language was a bit of an issue
but somehow they were still able to communicate. We were fortunate to have other
parents in attendance that spoke English
and who could translate for their children.
The week long extravaganza was video
taped by a professional media crew. The
intent of the ILF is to create a documentary
about children with lymphedema and this
Box 403
Lac du Bonnet
R0E 1A0
by Kim Avanthay
week set the landscape for an exceptional
learning tool.
During the International Lymphoedema
Framework conference, a quick presentation highlighting the week long adventures
of the camp, was shown to the conference
delegates. If this is any indication of what
the documentary will be like, we will surely
be blown away. The video was so moving
that you couldn’t help but swell with emotion
as you were watching it. Amazing!!
I’ve been to many conferences regarding
lymphedema. Austin has not. This was a
benefit to him to be able to see through his
own eyes, the information that I’ve been
sharing with him and trying to get him to
understand. It was great that the teachers
were someone other than his mother and
that he was able to grasp the importance of
our daily routine and see how other maintenance options could be incorporated.
The camp was truly an amazing experience
for both parent and child and I hope that in
time, this will be an experience that we can
offer to others, closer to home.
Our sincere gratitude to the ILF, Montpellier
University, all of the facilitators and students
who ensured the week long activities were
enjoyable and beneficial for our own personal learning experience. Thank you!!
Notre sincère gratitude à l'ILF, Université de
Montpellier, tous les animateurs et les étudiants qui ont assuré la semaine des activités de long ont été apprécié et bénéfique
pour notre propre expérience d'apprentissage personnelle.
Je vous remercie!
Lymphedema Association of Manitoba—Fall 2012
Inside this issue:
ILF Children’s Camp
2, 3
4th ILF Conference
4, 5,
My Experience at the
4th ILF Conference
6, 7
Resource Guide
We need you!
The Lymphedema Association
of Manitoba is sending out a
call for help. Please contact
the LAM for information on
volunteer opportunities:
Newsletter Committee
Website Development
Page 2
Swelling with Emotion
International Lymphoedema Children’s Camp
(continued from page 1)
Bandaging session
Writing activity at the camp
Anna, Ludivine, Guillaume, Theo, Marin, Austin and Leo
Austin, Leo and Soren on the field trip to Epidaure
It was an extraordinary experience for my daughter Anna
and me. Anna had much fun making the film. The team
crew was just wonderful, comprehensive, loving, and very
professional too. The Montpellier hospital team did a great
job too. They were staying there, caring for us, paying
attention and laughing with us.
Meeting other people from all over the world was fascinating. It's good to be able to share about lymphedema with
people that have the same problem.
My daughter's conclusion : "If I hadn't had lymphedema on
my leg, I wouldn't have met those fine friends in Montpellier, and it would have been a shame."
Olivier de Robien (parent)
The last photo shoot at the camp - Christopher with the rest
of the children
Lymphedema Association of Manitoba—Fall 2012
Page 3
Volume 1, Issue 3
International Lymphoedema Children’s Camp
Parents’ table at the Gala Dinner
Camp attendees at the ILF Conference
43 Media’s table at the Gala Dinner
The children with the camp facilitators at the Gala Dinner
43 Media were invited by the ILF to come to the summer
camp in Montpellier to make a short documentary about
children with lymphedema. The children's involvement in
the film gave them experience on a real film set, working
with a film-crew...both in front of and behind the cameras.
Their participation was vital to the content of the film of
course, but their professionalism, patience and dedication
to the project were invaluable!
“The organization of the camp, with its careful balance of
information-giving workshops; free time for the families to
share their experiences and have fun together; and the
tight film schedule (which had to be shot while we had all
the children there together), made for a truly remarkable
week which has had a profound effect on all of us at 43
Media”, Amanda Atkins from 43 Media stated. “Here's to
the next one!”
Guillaume, Marin, Arthur and Theo
Lymphedema Association of Manitoba—Fall 2012
Page 4
Swelling with Emotion
4th International Lymphoedema Framework Conference Review
The following is a review by Wanda
Guenther of her experience while attending
the International Lymphoedema Framework Conference that was held in Montpellier, France, June 28—30. Wanda is a
certified lymphedema therapist (RMT,
MLD), living and working in Winnipeg,
I had the opportunity to attend the 4th
International Lymphoedema Conference,
held in Montpellier France, this year.
Montpellier is a beautiful city. A lot of
shopping happens in this city and the
European setting is so amazing; small
streets, shutters on screen-less windows
(coming from Manitoba, it's amazing)
and lots of people. Montpellier was a
great place to attend a conference and I
considered it a privilege to do so.
The conference covered the major current issues important to lymphedema
professionals, patients, families, and all
those connected to that world. The various topics were covered via workshops,
lectures, and discussions and I have
summarized my experience and comments of those of which I attended.
Lymphoedema and disability was presented by Pierre Castelein and Pierre
The discussion emphasised how expensive it can be to live with lymphedema—
the cost associated with diagnosis,
treatment and ongoing maintenance of
this condition. Treatment alone includes
MLD therapy, compression wrapping,
wound management and the ongoing
self-management of compression
garments, skin care and exercise.
Through discussions with other therapists, I learned that lipedema is normal
round fat cells gone wild - it just keeps
building because of life style, presence
of lymphedema, etc. Lipedema cells
grow in a different shape, in other
words, they are not a normal cell. That
is why it cannot be managed with diet
or exercise alone. When measurement
after treatment for lipedema indicates a
positive difference, it is not the fat we
have gotten rid of, it is the edema
locked into the cells—diet does not reduce lipedema.
It was recommended to use Manual
Lymph Drainage (MLD) and low pressure
bandages and garments to avoid lymph
vessel collapse and to support volume
Therapeutic education of children with
lymphoedema and their families.
Some issues discussed included:
 The painful journey for the families
with a focus on the difficulty of the
initial diagnosis and obtaining the
correct diagnosis.
 "Reaching the expert" along with the
fear of loss regarding expert care; the
need for local care and access to services.
 Parents need to work with the professionals and the existing school system. The school alone can present
some challenges, depending on
awareness and flexibility of the system.
 Child patients and their siblings typically have to take responsibility at an
early age.
 Family time and sibling time together
can be more limited.
 Potential sibling responses to the
situation of time and resources invested in one child, such as jealousy
and envy.
 Parental conflict associated with taking care of the sick child.
In general, family life can suffer from
lack of spontaneity. There is the challenge
to normalize the family experience and
minimize the impact. Yet, as one parent
stated, "we have to consider lymphedema
in everything we do." Consideration is
by Wanda Guenther
required for the tensions which normally
come with childhood, even without the
health challenges.
As the children grow to adolescent age,
the condition generally has more impact.
Issues can include body image and various adopted coping mechanisms, such
as denial, hiding, acting "normal", and
emotional distance. Some healthy responses can include acceptance and
meeting other teens with a similar
For parents, coping may include celebrating small gains, constant comparison
(small gains are big), normalizing as
much as possible and planning for the
Some tough challenges remain on receiving accurate information, proper
diagnosis, getting the treatment, cost of
the treatment and ongoing maintenance.
The impact on family life and siblings,
the problems with garments, shoes and
poor professional knowledge are important for quality of life and cannot be
Palliative care and lymphoedema
session was presented by Dr. Anna
I have attended this before but continue
to gain knowledge and insight through
this expert, passionate and “view from
the physician to the therapist” presentation.
It is important to know that lymphedema
is a problem and if left untreated, can
become more of a problem. Solutions
may include to set goals for today to
improve function, provide comfort and
help with today's problems.
Palliative care dictates that it is a multidisciplinary relationship; the diagnosis,
prognosis and consent.
To do something for the patient is better
than nothing if that is what the patient
Lymphedema Association of Manitoba—Fall 2012
Page 5
Volume 1, Issue 3
4th ILF Conference Review
wants, keeping in mind that a referral
from the oncologist and ongoing dialogue with the oncologist is essential.
The oncologist should know about the
treatment as well as the patient response
to the treatment.
suction may be possible. Liposuction is
expensive as it is recognized as a treatment for cosmetic disorder but not all
countries have the same standards. For
successful treatment with liposuction
there may be a need for 4-5 multiple
surgeries and the ongoing maintenance
of wearing daily compression garments,
along with exercise and skin care. This is
a life-time commitment. The relevant
questions are: who benefits, when is the
best timing for the surgery, what is the
associated morbidity, and who pays for
the procedure?
Therapists need to work within the
patient's tolerance, teach and be a
support to the family to enhance quality
of life. Sometimes the family needs to
be involved in the care and the therapist
may facilitate that, keeping in mind the
ability of the individuals and other
practical considerations. You may need
to seek support from the caregivers
already involved with the goal to
provide the best possible support—
emotionally and physically.
From working in this field for the past
11.5 years, I continue to learn something from everyone that I provide
treatment for. Everyone has a different
need but the treatment for lymphedema is the same; providing compression wrapping as patients are able to
tolerate, teaching the self-wrapping if
they and/or their family are able and/or
willing to learn this, posturing and removing the wrapping or garments that
cause discomfort. One piece of advice I
never will forget came from Hildegard
Wittlinger at the Vodder School of North
America - "If you don't know what to do
or where to begin, start with the face",
this will provide relaxation, build trust,
and give the touch that is so often
Surgery and lymphoedema: Launch of
International Position Document on
Surgery and Lymphoedema.
In this session Robert Damstra states
that "everything starts tiny". He talked
about basic care, diagnosis, prevention
and self-management. Also for some,
surgery could be an option.
MLD and CDT is the recommended
treatment but if there is no pitting, lipo-
one of the overheads to start this session.
This session included the topic of
“Primary lymphoedema” by Vaughan
Keeley, “A glimpse of the future of the
vessels ultrasound” by Michel Dauzat
and “Emerging and future treatments”
by Stanley Rockson.
Discussions included:
 Diagnosis and treatment of lymphedema based on molecular approaches,
familial history and presentation at
 Genetic factors with the different
types of genetics involved.
 Research and testing to improve the
diagnosis and treatment for lymphedema.
There is no breakthrough for daily practice for lymphedema treatment in terms
of surgery. Some lymphedema volume
reduction with liposuction can be successful. However, with obesity, liposuction may not be effective and weight
loss may have to happen first.
I also attended a workshop on foot and
hand strapping. This is an alternative
technique that was demonstrated to
deal with the edematous hands and
feet. Foot and hand strapping could be
appropriate for patients who do not
respond to the regular method of wrapping. It is impressive that so much compassion and care went into finding a
way to improve the quality of life for
patients in this particular circumstance.
New/future developments in the
management of lymphoedema.
"Being Ignorant is not as much a shame
as unwilling to learn" was written on
Overall I feel so privileged to have been
able to attend this conference; to meet
other therapists in the field, hear what
the doctors and researchers are discovering and together anticipate future and
positive changes. We are a community
moving forward and support for each
other is essential.
I found these sessions so interesting and
stimulating. Some information is of
course repetitive, but that is good as
well. It is often refreshed and serves as a
good reminder for our important work.
The new developments are encouraging
for the future of lymphedema and I am
proud to be part of this community. I
am proud of the passion and compassion of my colleagues and look forward
to continuing our work to better the life
of the person living with lymphedema.
The views that are expressed throughout “Swelling with Emotion” are those
of the authors and not necessarily
those of the Lymphedema Association
of Manitoba.
Lymphedema Association of Manitoba—Fall 2012
Page 6
Swelling with Emotion
My Experience at the 4th ILF Conference
The following is written by Katherine
Styrchak, RMT, CLT/CDT. This is a recap
of her experience while attending the
International Lymphoedema Framework
Conference that was held in Montpellier,
France, June 28—30. Katherine is a
lymphedema therapist living and working
in Winnipeg, Manitoba.
detect that something was wrong, and
well before measuring circumference
and calculating volume were able to
show a difference.4
Lymphscintigraphy is a test done to
trace "large molecules from the interstitial space back to the vascular compartment".1 Essentially, a radioactive
tracer is injected into the interstitial
space and its uptake by the lymph system is followed using a gamma camera.2
Lymphfluoroscopy injects a nonradioactive solution, a protein actually,
that is absorbed harmlessly into the
body. It shows up under infrared light.3
This is the same biochemistry that
makes fireflies glow.
Bio-impedence spectroscopy uses high
and low frequencies of electrical current
to go through different tissues to detect
fluid accumulation. Fluid is the first sign
of a failing lymphatic system. Piller reports that bio-impedence detects
problems with the lymphatic system
eight months before the patient could
and/or adipocytes”.6 There may one day
be gene therapy, an injection if you can
imagine, that would cure certain kinds
of primary lymphedema!
Those few days in France, I met people
afflicted with lymphedema, and it was
their experience of living with lymphedema that brought me back to why we
need better ways to detect and measure
lymphedema. It was easy to get lost in
the lab research, looking at gene sequences, getting excited about ongoing
research and potential results. But it is
always about the people. It was interesting to hear patients’ different ways of
managing their condition and under
which circumstances they would
"cheat". Therapists would call this "noncompliance"; patients view it as "living
and trying to fit in".
I attended the ILF conference in Montpellier, France at the end of June, 2012.
As a "new" MLD therapist (trained in the
Dr. Vodder technique in spring 2011), I
was thrilled to see doctors, researchers,
therapists and people living with lymphedema from all over the world, getting
together and presenting the latest research on the care and management of
this chronic, often misdiagnosed and
misunderstood, condition.
The research presentations were fascinating. I loved listening to presenters list
the techniques used, view and identify
lymph vessels, measure fluid density
with bioimpedence and volume with
volumetry and of course, measuring
by Katherine Styrchak
While the mechanical tonometer had
been widely used to measure pitting, it
must be held flat on the tissue within 5
degrees of upright to be accurate.
Viscoelastic tonometry (VE) measures
the tissues' responses to applied pressure, which can indicate fibre and tissue
changes. This is still in the research
phase. The problem with just using tape
measures to calculate volume is that the
proportion of tissues may change, while
the volume of a limb may stay the same.
Fluid, fat and muscle can change in proportion depending on weight gain, loss,
increase in exercise, etc. 5
To hear and see that specific genes
(FOXC2, VEGF-C, KIFF11, etc.) have been
identified as malfunctioning and responsible for certain kinds of primary lymphedema was incredible news. With VEGFC mutations, “lymphedema is due to
low-grade inflammation caused by decreased clearance of inflammatory
mediators secreted by immune cells
Research shows that lymphedema
patients want independence and control
over their therapy. 7 When properly
educated in skin care, diet and exercise,
self-bandaging and simple self-drainage,
quality of life improves. While there
may be a slight increase in volume
months into the maintenance phase of
treatment, this does not necessarily
impact quality of life. 8 Lymph fluid is
exactly that: fluid. It moves and the affected limb(s) adjust accordingly. When
a person with lymphedema feels that
their therapy is maintaining their limb(s)
to their expected activity level, that the
limb is not interfering with their social
life and activities, quality of life is also
maintained. The therapist can play a
role in identifying patients who may slip
through the psychosocial cracks by asking questions about the patient's social
interactions. One would not necessarily
ask "Are you participating socially?",
however, asking what one is doing for
exercise or for the weekend is a good
way to find out if the person is managing
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
capable of managing his or her lymphedema, the more they are empowered
and in effect, become better prepared
to move forward with their lives.
Participating in the ILF conference in
Montpellier gave me the chance to see
just how complex the field of lymphedema is and the direction in which it is
going. The coming months and years are
exciting for the doctors, researchers,
and therapists. Nevertheless, one cannot forget the impact lymphedema is
having on millions of people and that
the field must strive to remain patientcentered in order to improve lives.
KEELY, Vaughn, The use of lymphscintigraphy in the management of chronic edema, Journal of Lymphoedema, 2006, Vol 1,
No 1, pp 42.
KEELY, Vaughn, The use of lymphscintigraphy in the management of chronic edema, Journal of Lymphoedema, 2006, Vol 1,
No 1, pp 42.
BELGRADO, Jean-Paul, Lymphfluorscopie associee au traitement physique pour le lymphademe, presented at the ILF
Conference,Montpellier, France, 2012.
PILLER, Neil, Review of impact of relationship issues with veins and their pathologies, presented at the ILF Conference,
Montpellier, France, 2012.
PILLER, Neil, Review of impact of relationship issues with veins and their pathologies, presented at the ILF Conference,
Montpellier, France, 2012.
JOHANSSEN, Mads, Peripheral circulation in breast cancer related lymphedema, presented at the ILF Conference, Montpellier,
France, 2012.
COUPE, Marlene, Éducation thérapeutique du patient. Presented at the ILF Conference, Montpellier, France, 2012.
COUPE, Marlene, Éducation thérapeutique du patient. Presented at the ILF Conference, Montpellier, France, 2012.
The International Lymphoedema Children’s Camp Participants included:
Breast Cancer Lymphedema
Support Group
Austin Avanthay
Theo Bortolotti
Anna De Robien
Marin Dumas
Ludivine Fuster
Soren Jeppessen
Christopher Johansson
Guillaume Marchand
Leo Terninck
Meets in Winnipeg at 6:30 p.m.
On the third Tuesday
of the month
The children all got to know the actor,
David Coburn, very well as they spent
a lot of time with him both on and off
the air.
Thanks to all involved for making this
experience truly amazing!!
[email protected]
You can also find us
David Coburn (actor)
Lymphedema Association of Manitoba—Fall 2012
on Facebook
Page 8
Swelling with Emotion
Resource Guide
Association of
Businesses and service providers pay a fee to be listed. The Lymphedema Association of Manitoba is not responsible for
quality of service or rates charged.
Licensed physiotherapist certified in the area of
lymphedema care and cancer rehabilitation
Donna Sarna Physiotherapy & Rehabilitation
102 – 897 Corydon Avenue, Winnipeg, MB
phone: 204 452-2608
Lymphedema Association of Manitoba—Fall 2012
Resource Guide
A special edition of
Lymphedema Matters
Volume 15 Issue 3
Fall 2012
Knowledge is power
Welcome to the 5th Edition of our
Annual Fall Resource Guide.
Navigating through the maze of
obtaining a diagnosis, treatment,
and reimbursement for lymphedema care can be a challenging
and daunting task. That is why the
Lymphedema Association of Ontario
has prepared this resource guide to
help you, regardless of whether you
are a patient learning to live with
lymphedema, a health professional
working with lymphedema patients,
or a compression garment fitter
who is trying to provide outstanding
service to your clients.
Just as someone who lives with
another chronic condition such as
diabetes or arthritis, it is knowledge
and access to information that will
empower one to confidently manage
their lymphedema.
We are committed to providing you
with the tools and resources to
facilitate this process and make
your journey easier.
From the LAO Board and Staff
We hope you will find the compilation of information helpful and encourage you to share this guide
with your colleagues, family members, doctor and other members of
your health care team. We still have
a long way to go in spreading
awareness and education of lymph–
edema to all health professionals in
Ontario. Sharing this guide is another step forward.
Lymphedema care in many
countries is beginning to follow a
chronic disease model - that of selfeducation, self-monitoring and selfmanagement.
Fall 2012
Shannon Moore (left), Outreach and Event
Planner and Anna Kennedy (right),
Executive Director
The Lymphedema Association of Ontario
Contact us for your free
copy of our information
pamphlet, outlining the
lymphatic system, types of
lymphedema, symptoms,
components of lymphedema
management and important
precautions to take.
Resource Guide
Disclaimer: The LAO does not guarantee, warrant or endorse any product or service advertised in this publication.
2 Resource Guide
The Lymphedema Association of Ontario
Fall 2012
Association of Ontario
Committed to improving
the lives of people
living with lymphedema
Miles Johnson PhD
Toronto Sunnybrook Centre
Ian Dayes MD
Hamilton Juravinski Centre
Robert Harris RMT CDT
Vodder International School
Donna Lue Reise RN CDT
Talspar Nursing Services
Martina Reddick RN CDT
Eastern Health Services
ISL Consensus Document on the Diagnosis and Treatment of
Peripheral Lymphedema (2009)
National Lymphedema Network (USA) Guidelines and Position Documents
A prospective surveillance model for rehabilitation for women with
breast cancer (2012)
Kim Gagan President
Leona DiCasmirro
Janice Goldberg Secretary
Fran Suran Acting Treasurer
Directors at Large
Ruby Kreindler, Sarah Wigan
Anna Kennedy
Executive Director
Shannon Moore
Outreach and Event Planner
Honorary Patron
Honourable David C. Onley
Lieutenant Governor of Ontario
Lymphedema Association
of Ontario
Charitable Registration Number
87165 5049 RR0001
Fall 2012
International Lymphoedema Framework (ILF)
Best Practise Document - 2nd Edition
• Position Document: Compression Therapy (2012)
• Position Document: Surgical Intervention (2012)
ILF Focus Document - Care of Children with Lymphoedema (2011)
ILF Focus Document - The Management of Lymphoedema in Advanced
Cancer and Oedema At the End of Life (2011)
International Consensus Document - Best Practice for the Management of
Lymphoedema - 1st Edition (2006)
ACS - A primer on the identification and management of
lymph-edema in Oncology (2009)
Saskia Thiadens RN CDT
United States-NLN
Shetty Lee MD
Austria-Wittlinger Clinic
Neil Piller PhD
Australia-Flinders University
4161 Dundas Street West
Toronto, Ontario M8X 1Y2
Toll Free: 1-877-723-0033
Fax: (416) 236-7604
[email protected]
Clinical Guidelines
TIP: set your internet browser to automatically update you
on any lymphedema related news through
Google Alert
Aqua Lymphatic Therapy
Aqua Lymphatic Therapy (ALT) is
based on the principles of the
Casley–Smith exercise program for
lymphedema and is applied in an
aquatic environment. The method
enhances traditional CDT lymphedema therapy by combining principles of lymphatic anatomy and
physiology with the effect of water
The water temperature ranges
from 31°C to 33°C (78.8-91.4°F).
At this temperature slow limb
movement can be performed without increasing swelling. The buoyancy of the water holds the limb
afloat, enabling exercises and self
massage with minimal effort while
swelling reduction is facilitated by
the hydrostatic pressure of the water which increases lymph and venous return (similar to the effect of
a compression garment).
The Lymphedema Association of Ontario
ALT involves self-treatment in a
group setting. Participants are encouraged to choose the exercises
which benefit them the most. They
are provided a chart with their limb
measurement results every month
to help them decide how best to
continue their individual treatment
plan. The participants are thus provided with the tools they need to
carry out self-treatment at their
convenience and the physiotherapist serves as a resource, but does
not direct the individual plans of
care. This method provides active
opportunities for self-directed care
that may enhance self-advocacy,
independence and self-esteem.
For more information about ALT,
including therapists that are trained
in ALT and/or group classes visit
Resource Guide 3
Lymphedema Certified Therapists (CDT)
Cathy Petzoldt PT
[email protected]
Donna Lue Reise RN LANA
905-385-3176 or 905-523-4999
[email protected]
Maureen Sawyer RPT
[email protected]
Kimberly Tweedie RMT
[email protected]
Rebecca Wilkinson RMT ADP ALT
Sarah Cowley RN RMT
Vivian Dim OT Reg(Ont) LLCC
[email protected]
Angela Hunt RMT LLCC ALT
Pamela Monarch RMT
519-751-7096 ext.3414
Lynette MacKinnon RMT
Jennifer Phillips RMT
Kingston 613-340-0306
Brockville 613-342-3333
Louise Danieli RMT
[email protected]
Nancy Scagnetti RN RMT ALT
Mobile Therapist 905-607-8422
[email protected]
North Bay
Susan Woodman RMT LANA
[email protected]
Caroline Bieze RMT LLCC
Janet Millward RMT
Ayr, Ontario 519-632-9991
[email protected]
Nancy Shoemaker RN RMT
LLCC CDT 905-465-2929
[email protected]
Crystal Sivill RMT
[email protected]
Ray Vickers RMT CK
Oakville/Milton 905-699-3451
[email protected]
Carlos Ospina, D. Ac. MLD
647-705-8995 [email protected]
Swelling Solutions
Catherine Burt RN, RMT ALT
Melody Southgate RMT
Rachelle Wright RMT CK ALT
Durham Region
Oshawa/Port Perry
Kimberly Boersen-Gladman RMT
Ramona Herman RMT ALT
[email protected]
Anne Dockendorff RMT
[email protected]
Jason Mandalentsis RMT ALT
[email protected]
Helen Murray RN
Lymphcare Centre 519-913-0181
[email protected]
Heather Cirone PT
Park Road Physio 905-438–1500
[email protected]
Phyllis Christian RMT
Mobile Therapist (Durham Region)
Susan Sweetapple RMT
[email protected]
Etobicoke/West Toronto
Alison Glasbey RPT
[email protected]
Violetta Soffe RMT
Mobile 416-727-0020
[email protected]
Renata DeForest RMT
519-993-2736 (cell)
[email protected]
4 Resource Guide
Eryn Lorriman RMT
705-549-1700 www.georgianbay
Reshmi Cain RMT
Ann DiMenna PT
Mobile-Toronto and Area 647-500-4771
Rae Baron RMT
[email protected]
Catherine Croteau RMT
Julie Dagenais-Watson RMT ADP
Haley Rehab Clinic
613-422-5061 two locations
Louise Killens RPT
Mary Hutton RN
[email protected]
The Lymphedema Association of Ontario
Fall 2012
Owen Sound
Danuta Valleau PT
[email protected]
Sylvia Crowhurst RMT
Sharon Evans ALT
Kinexions 519-371-8314
[email protected]
Lindsay Davey PT
Toronto Physio 416-792-5115
Marnie Gallant RMT
416-732-5218 or 416-482-4476
[email protected] (Mobile)
Janice Simmonds RMT
Ashburnham Massage
Sasha Goudriaan RMT
[email protected]
Anne-Marie Craigen RMT
[email protected]
Lucy Romano RMT
[email protected]
Toronto Lymphocare Centre
416-531-7612 or 705-458-2156
Niki Travers PT
647-701-5582 Spadina & Bloor
Massage Therapy Clinic
Akari Yokokawa RMT
Pam Hammond RMT
416-928-9650 Spadina & Bloor
Massage Therapy Clinic
Monica McCarron RMT ALT
Sophia Finkel HD RMT
416-318-4135 Toronto & Richmond Hill
267 Finch Ave & 8905 Bathurst St
Veronica Lelchuk RMT
[email protected]
Nadine Maraj-Nyiri RMT
Mobile Therapist 416-569-2280
[email protected]
Richmond Hill
John Mulligan RMT LANA
Cindy Schultz RMT
Port Health Clinic 905-684-6066
[email protected]
Esther Epp-Kaethler RN ALT
[email protected]
Jeanne Magashazi RMT
[email protected]
Petra Norris RN
416-841-3119 Toronto and Etobicoke [email protected]
Catherine Paterson RMT
[email protected]
647-351-2222 Yonge/Eglinton
Jo-Anne Racette RMT
Janmari Baas Ross RMT
[email protected]
Bernadette Tallon RMT
519-884-4848 [email protected]
New Hamburg 519-662-9331
Become a Member
Place your listing here by
becoming a Professional
Member with CDT LISTING
Contact us today at 1-877-723-0033
or send in the membership form on
page 9
Ly Raha RMT
All therapists listed have been trained by a LANA approved school and received a minimum of 135 hours of post
graduate training (1/3 theoretical, 2/3 practical) specific to the treatment of lymphedema including the following
Complete Decongestive Therapy Components: Manual Lymph Drainage, bandaging, compression devices
review, exercise, diet/nutrition and skin care. The therapists are either Registered Nurses (RN), Physiotherapists
(PT), Occupational Therapists (OT) or Registered Massage Therapists (RMT) and have provided proof of certification. Those who have additionally certified in Aqua Lymphatic Therapy are indicated with ALT.
Therapists pay a fee for listing their services. The LAO is not responsible for the services performed or rates charged.
Hourly rates for lymphedema therapy can range from $70 to $140. Insurance plans will reimburse only to the
standard provincial rates of therapy that MLD is billed under. As an example, the Registered Massage Therapists
Association of Ontario’s standard 2011 rate is $93 for 60 minutes of treatment (including HST).
Fall 2012
The Lymphedema Association of Ontario
Resource Guide 5
Hospital Based Lymphedema Care
Referral Base
Royal Victoria Regional
Health Center Barrie
Rowena Hill, PT/CDT
Ext. 43522
Oncology related secondary LE
Assessment, education, MLD, compression bandaging, exercise, ADP authorizer
Juravinski Cancer Centre
Margaret Forbes, RN
(EC) Nurse Practitioner
Ext. 64176
Breast cancer & melanoma patients of
oncologists affiliated with the JCC
Assessment, treatment plan, education, compression bandaging through CCAC, ADP authorizer, refer out for MLD
Grand River Regional
Cancer Centre Kitchener
Janet Millward, PT,
519-749-4370 Ext.5781
519-749-4382 (fax)
LE secondary to cancer only
Assessment, ADP authorizer, education, bandaging, MLD
London Health Science
Linda Evans, PT
Primary and secondary LE patients,
Centre Victoria Hospital
Gwen St. John
519-685-8051 (fax) 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
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
Chronic Wound
Management Clinic
David Keast, MD FCFP
Anne LeMesurier, RN
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 *
905-813-4209 (fax)
Outpatient PT (upper extremity only)
Referrals only from CVH doctors on staff
Assessment and treatment, compression bandaging, education, pump, refer out for MLD
North Bay Regional
Health Centre
North Bay
Physiotherapy assessment,
Sudbury Regional Hospital *
Louise Sylvestre, PT
Laura Lake, PT
Primary and
secondary LE with referral
Ext. 4843
Ext. 4846
ADP authorizer, compression bandaging, education, pump
Ext. 2175
Secondary LE only with referral from
health care professional or self referral
Inpatient and outpatient (designated
to cancer patients)
Assessment, ADP, education, MLD, pump
Thunder Bay Regional
Health Science Centre
Thunder Bay
Leona DiCasmirro,
Assessment, education/prevention, treatment (MLD), bandaging, ADP, garment fitting and follow-up education
Odette Regional Cancer Neda Soltani, RN
Susan Bowles, RN
Ingrid White, RN
Health Sciences Centre
Assessment, ADP, education, refer out for MLD
Ext. 81406
Secondary LE patients of the Odette
Cancer Centre
Princess Margaret
Acting Clinical Lead
Ext. 5267
UHN out-patients with LE—upper extremity and upper body or gyncecological secondary to cancer
Stephanie Phan, OT
PMH Survivorship
Lymphedema Clinic: assessment, ADP, group education and customized individual plan for learning lymphedema
self-management, refer out for MLD, skills refresher course
6 Resource Guide
The Lymphedema Association of Ontario
Fall 2012
SickKids - The Hospital
for Sick Children Toronto
Pamela Hilliard, PT
Referral Base
Ext. 0
Upper and lower extremity LE
(mostly primary), children under 18
Assessment, monitoring, education, ADP authorizer, compression recommendations/bandaging, refer out for MLD
St. Joseph’s Health
Centre Toronto
Marie Eason Klatt, OT
Ext. 3550
Primary and secondary LE within encatchment area with referral
Assessment, ADP, education, teach compression bandaging, assessment for pump, refer out for MLD
Toronto General
Cindy Dixon, RN
Lower extremity Primary and secondary LE patients
Diagnosis, ADP authorizer, assessment for pump, refer out to CCAC for compression bandaging
Windsor Regional Hospital
Adriana Golob, PT
Group education classes (one session per month)
Ext. 72301
Primary and secondary LE patients
Women’s College Hospital *
Ext. 4414
Secondary LE, breast cancer patients
at Women’s College Hospital
Naffisa Nathwani, OT
Tania Obljubek, PT
Assessment, ADP, education, bandaging, initial compression and MLD, refer out for MLD maintenance phase
LEGEND: ADP - Authorizers for Assistive Devices Program compression garments, CCAC—Community Care Access Centre,
CDT - Complete Decongestive Therapy,
LE - Lymphedema, MLD - Manual Lymph Drainage, OT- Occupational Therapist,
PT - Physiotherapist, Pump - pneumatic extremity pump, RN - Registered Nurse
*information could not be validated
Lymphedema Support Groups
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
Contact Pam Monarch at 519-751-7096 x3414
(Mon) or 519-756-2920 x255 (Tues and Wed)
Information, emotional and practical support for those
with lymphedema, and for those at risk. The group
meets every third Thursday evening of the month, from
7 p.m. to 9 p.m. 86 Colborne St. West.
For more information or to register call Hearth
Place at 905-579-4833
The group meets 5 or 6 times a year between September and June, usually on the last Wednesday of a
month. One-on-one support is available at other times.
Contact Breast Cancer Action Kingston at
613-531-7912 or visit
Workshops-Learn the facts about secondary lymphedema, how to self-monitor, important lifestyle recommendations, when and where to go for help and exercises to delay the onset or manage lymphedema.
Go with the Flow is an exercise program designed for
breast cancer patients to minimize and reduce the risk
of lymphedema. To register for the lymphedema
workshop or exercise programs, please call Breast
Cancer Action Ottawa at 613-736-5921 or visit for further information.
Waterloo region
meets monthly in the Victoria Room, Victoria Place,
290 Queen Street South, Kitchener on the last Tuesday of each month at 7pm.
Call Melody Southgate at 519-749-0102
North Bay
Educational workshops are offered free of charge by
Caring Treatments Massage and Lymphedema Clinic
and will run once a season.
To register and obtain the meeting site, please
call Susan Woodman at 705-497-0683
Fall 2012
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
To register, please call the LAO at 416-410-2250
or 877-723-0033 toll free.
The Lymphedema Association of Ontario
Resource Guide 7
Corporate Members
Local Fitters
Coulter’s Pharmacy London
3M Canada
Paradigm Medical Inc.
Dell Pharmacy
Local area numbers available online
Pascoe Canada
Frans Boutique Cambridge
BSN Medical - Jobst Inc.
Mansueta Medical Garments
Toronto 416-591-0006
700 University Avenue
Canadian Bandage Shoppe
McNiece T.E.N.S. Inc. SW Ontario
Renaissance Woman Georgetown
ShoppersHomeHealth Care
Local area numbers available online
Academy of Lymphatic Studies
The Nu Me Boutique Kitchener
Linotrade Ltd.
Dr. Vodder School International
Yurek Home Health London
Lymphedema Depot
Norton School of Lymphatic
Become a Corporate Member
and promote your services
here and on our website.
We encourage all our readers
to visit the websites of our
Corporate Members.
8 Resource Guide
The Lymphedema Association of Ontario
Fall 2012
Charity Challenge and Fundraising
The Lymphedema Association of Ontario receives no
government funding and relies solely on memberships and donations to provide programs and services such as our telephone help line, annual conference, Lymphedema Matters and resource guide, the
Big Book for Kids Program and our advocacy and
awareness activities.
Toronto Charity Challenge October 14, 2012
This fall marks the 5th year we will be participating
in the Scotia Bank sponsored Charity Challenge 5km
walk or run event as Team Lymphedema, raising
money and awareness in downtown Toronto. We
really need your help and are calling all those living
with and at risk for lymphedema, their family members and friends, therapists and health professionals
to join us in this walk on Sunday, October 14.
Ontario Wide Fundraising
If you don`t live in Toronto, you can still participate by
considering several options. You can join one of the
Charity Challenge satellite teams in Thunder Bay,
Niagara or Kitchener-Waterloo or organize your own
event in your local city and neighborhood. It can be as
simple as just walking, running or cycling in your local
park with a friend, or can be more organized by mapping out a walk route and recruiting family, friends and
neighbours to participate and solicit their own pledges
and sponsorships.
If you have another fundraiser idea….call us and we can
provide you with tools to help you promote a jewellery
party, garage sale fundraiser, Zumba party or idea of
your choice. The possibilities are endless.
Remember—every dollar counts.
Sat. October 13 ΠKitchener 5km Walk ΠFundraising Event at Swelling Solutions
Sun. October 14 ΠTORONTO SCOTIA CHARITY CHALLENGE ΠFundraising event
Lace up your shoes and mark your calendars to join us
Membership has its privileges
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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
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Corporate Listing † $250
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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
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Mail or fax your completed form to 4161 Dundas Street West, Toronto, Ontario M8X 1Y2
Fall 2012
The Lymphedema Association of Ontario
Š 416-236-7604
Resource Guide 9
100 Questions and Answers About Lymphedema
Saskia Thiadens, Paula Stewart, Nicole Stout (2009)
American Lymphedema Framework Project
A Leg Up! On Lymphedema
Courtney Blair Day (2009)
Breast Cancer Action Ottawa
Coping With Lymphedema
Joan Swirsky (1998)
Canadian Lymphedema Framework
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
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
Sharon Langfield and Janet McFarland (2nd Edition, 2009)
Where the Sky Meets the Earth: A Lymphedema
Therapist’s Guide to Working with the Whole
Sharon Langfield, Janet McFarland, David Rankine (2010)
International Society of Lymphology
Lymphatic Research Foundation
Lymphedema People
Lymphedema Support Network (Britain)
Lymph Notes
Lymphoedema Network Australia
Lymphology Association of North America
Lymphovenous Canada
Lymph site for children
LymTeen website for lymphedema
McGill Lymphedema Research Program
National Lymphedema Network (USA)
is the first step to
your lymphedema
Build your lymphedema library
Vodder School InternationalInstructional DVDs: Arm Exercise, Leg Exercise
and MLD and Lymphedema
Patient Education: Educational Series (CD) NEW
from the Academy of Lymphatic Studies
The Vital Essence: Understanding the lymphatic
system in health and disease (CD - professional
or patient version)
10 Resource Guide
International Lymphoedema Framework
Contact us for the largest selection
of lymphedema books The Lymphedema Association of Ontario
Fall 2012
Financial Assistance
ADP-Assistive Devices Program
Compression garments and sleeves for chronic lymph
-edema and extremity pumps for primary lymphedema are partially covered through the Assistive
Devices Program (ADP), Ministry of Health and Long
Term Care. Any resident of Ontario with a valid
health card is eligible to apply. ADP will pay 75 % of
the approved cost. Those receiving social assistance
benefits may be eligible to receive more money.
Lymphedema compression garments are replaced as
needed to a maximum of three sets of two outfits
each, within a 12 month period.
An ADP Equipment/Supply Authorization form can be
obtained from an approved authorizer or vendor registered with the ADP or requested directly from the
Step 1: Assessment
You must be examined for an initial diagnosis by a
medical specialist in the area of vascular surgery,
orthopaedic surgery, radiation or medical oncology,
internal medicine, paediatrics, plastic surgery or general surgery. A General Practitioner in Oncology
(GPO) may also provide his assessment. On an ongoing basis your family physician can complete the ADP
assessment form required every two years.
pational therapy, registered massage therapy or sometimes nursing care. If submitted expenses are refused
by your insurance provider, it is prudent to challenge
the decision by speaking with a program administrator
and sending them information about lymphedema. A
letter of support from your therapist or physician may
also help.
Income Tax Deductions
Certain medical expenses can be itemized as deductions
on your income tax return to help reduce the amount of
income tax you pay. Examples of eligible costs are:
● Unpaid balance of expenses for treatment/supplies not
covered by ADP or insurance
● Travel expenses related to MLD treatment
● Purchase of compression short stretch bandaging supplies
For more information on allowable expenses, refer to
the Canada Customs and Revenue website at and check under forms and publication - Bulletin IT519R2—CONSOLID—Medical Expense and Disability Tax Credits.
Community Support
Some community groups provide financial assistance for
cancer related expenses to low income individuals.
Check for an extensive database on the
community services available. You can also check with
your local parish, Kiwanis, Lions or Rotary Club.
Step 2: Authorizer
An authorizer will assess the exact type of device
required. Authorizers are occupational therapists,
physiotherapists, registered massage therapists and
registered nurses who have registered with the ADP.
Step 3: Purchase
Compression garments and sleeves can be purchased
from a vendor registered with the ADP who have
staff trained in the assessment and fitting of compression devices.
For detailed information about the program and to
access the most current list of vendors and authorizers in your area, call 416-327-8804 or 1-800-2686021 toll free or check the ADP website at
Lymphedema Related Costs
Lymphedema treatment is not fully covered by Ontario Healthcare. However, government support is
only one source of funding patients should explore.
Insurance Providers
The coverage provided by specific employee based
health benefits and private insurance programs varies greatly. Manual lymph drainage is usually reimbursed under the categories of physiotherapy, occu-
Fall 2012
The Lymphedema Association of Ontario
Resource Guide 11
Top Ten Reasons to Attend
Speakers Attend plenary sessions and workshops and hear lymphedema
experts such as Dr. Anna Towers, Dr. David Keast, Andreas and Hildegard
Wittlinger, Jill Binkley, Margie McNeeley, Robert Harris, and more...
Exhibitors Browse the latest products and services available in
Canada for lymphedema management in the Exhibit Hall
Location Access the conference easily in downtown Toronto at the
Courtyard Marriott, just steps from College Subway Station
Ethnodrama Watch the Ontario premier of “The New Normal”, a theatrical
presentation of breast cancer survivors’ experience with lymphedema
Bursaries Apply for funding available to
breast cancer patients from the Canadian
Breast Cancer Foundation (CBCF)(subject to eligibility)
CBCF Luncheon Hear CBCF- funded
researcher, Doctor Miles Johnston speak
about his latest research
Learn Discover the latest developments
in lymphedema research and treatment
Ask the Expert Direct your questions
to international lymphedema experts
Network Meet other patients,
It’s not too late
by Oct 24
For more information
on conference agenda,
prices, and how to
register please visit
health professionals and exhibitors
Empower Join other patients and health professionals dedicated to
increasing their knowledge of lymphedema and promoting awareness
4161 Dundas Street West
Toronto, Ontario M8X 1Y2
416-410-2250 416-236-7604 (f)
Association québécoise du lymphœdème
Lymphedema Association
of Quebec
L automne 2012
Pamela Hodgson, Anna Towers, David Keast, Jill Allen, Anna Kennedy, R achel Pritzker
Le comité exécutif du Partenariat canadien du
lymphoedème (CLF) est heureux de présenter ce
rapport incluant les points saillants de la
conférence ILF 2012, tenue du 28 au 30 juin à
Montpellier (France).
Délégués, thérapeutes et praticiens ont pu partager
l’espoir lié au fait que les progrès dans la recherche, le
diagnostic et le traitement avancent à grands pas
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
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
Le document sur la thérapie de compression reflète
l’état de la recherche, les différentes pratiques cliniques
en cours dans le monde, les dernières observations
physiologiques ainsi que les changements intervenus
dans la façon de voir les choses. Les données probantes
actuelles confirment que la compression est l’élément le
plus important dans le traitement du lymphoedème
mais elle ne doit pas gêner le fonctionnement ou la
mobilité générale du patient.
Trois nouveaux arguments ont été particulièrement
Encart de l'Association
Québécoise 1)
pour les thérapeutes:
rarement les profils de compression graduée selon la
Loi de Laplace, 2) les approches traditionnelles utilisées
pour remplir les plis cutanés accentués peuvent
Trois nouveaux arguments ont été particulièrement
intéressants pour les thérapeutes: 1) on réalise
rarement les profils de compression graduée selon
la Loi de Laplace, 2) les approches traditionnelles
utilisées pour remplir les plis cutanés accentués
peuvent produire une pression négative, et 3) un
capitonnage de mousse excessif réduit la
compression appliquée sur le membre. Les effets
de la compression sur les systèmes circulatoires
lymphatique et vasculaire laissent penser que l’on
peut utiliser la compression chez les patients avec
artères compromises. Une présentation a porté sur
les concepts de pression et de rigidité et sur le
mode d’action de différents types de matériaux.
Document de positionnement sur les
interventions chirurgicales pour le
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
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
encore du travail. Aux États-Unis les données
probantes en faveur de la chirurgie ne sont pas
considérées comme suffisantes pour justifier un
Traitements émergents et futurs - thérapies
géniques et moléculaires
Le Dr. Stanley Rockson de l’Université Stanford a
parlé de biomarqueurs et de thérapies
Voir page 2
Les chercheurs peuvent, à l’aide des biomarqueurs,
détecter le lymphoedème au stade 0 ainsi quepage
la 1 prédisposition génétique des personnes à risque.
Les agents ciblés, par exemple ceux qui
augmentent le VEGFR3, peuvent être utilisés contre
les anomalies fonctionnelles du lymphoedème. Ces
Conférence ILF 2012
cont. de page 1
Les chercheurs peuvent, à l’aide des biomarqueurs,
détecter le lymphoedème au stade 0 ainsi que la
prédisposition génétique des personnes à risque. Les
agents ciblés, par exemple ceux qui augmentent le
VEGFR3, peuvent être utilisés contre les anomalies
fonctionnelles du lymphoedème. Ces agents peuvent
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
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.
présentation intitulée
“Photogrammetry for limb
volume measurement” (Photogramétrie pour mesurer
le volume d’un membre) a montré comment les
caméras à haute résolution portables combinées aux
techniques d’imagerie par ordinateur pouvaient
calculer le volume d’un membre à partir de plusieurs
images de ce
membre. Des marqueurs sur le
membre permettent au logiciel de faire les réglages
voulus en cas de changement de distance ou d’angle.
M. McFetridge travaille à la mise au point d’une
application ingénieuse pour téléphone intelligent,
appelée LymphTracker, qui permettrait aux patients
de surveiller eux-mêmes le volume d’un membre à
l’aide d’un iPhone ou d’un iPad.
membre permettent au logiciel de faire les réglages
voulus en cas de changement de distance ou d’angle.
M. McFetridge travaille à la mise au point d’une
application ingénieuse pour téléphone intelligent,
appelée LymphTracker, qui permettrait aux patients de
surveiller eux-mêmes le volume d’un membre à l’aide
d’un iPhone ou d’un iPad.
Rôle de la génétique dans la classification du
lymphoedème primaire, secondaire et du
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
phénotypique détaillée de syndromes qui incluent le
Nous finirons par disposer de
classifications à partir de tests génétiques quand on
découvrira plus de mutations génétiques comme, par
exemple, la mutation de VEGFR3 dans la maladie de
Milroy. Des gènes qui peuvent prédisposer au
lymphoedème sont également à l’étude. Voir page 3
Encart de l'Association Québécoise du Lymphoedème
page 2 Conférence ILF 2012
cont. de page 2
Modèle de surveillance prospective dans le suivi
de patientes avec un cancer du sein
L’identification précoce du lymphoedème sous-clinique
peut ralentir la progression du lymphoedème mesurée
à un an.
Nicole Stout, physiothérapeute et
chercheure à Bethesda, aux États-Unis, a soutenu
qu’un modèle de surveillance pouvait nettement
diminuer les coûts de la prise en charge du
lymphoedème (modèle de la surveillance à 636$ par
an comparé à 3124$ pour une prise en charge
Pour plus de détails et PDF gratuits, consulter le
supplément de la revue CANCER, avril 2012,
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
Pressions différentes pour les bras et les jambes,
et expansion de l’utilisation de dispositifs de
Le Dr Robert Damstra a présenté les observations
d’une étude faite en 2011 pour
déterminer les
pressions optimales dans le bandage de compression
à couches multiples. La compression appliquée pour
traiter le lymphoedème du bras s’est révélée plus
efficace à des niveaux de compression plus bas (3040 mmHg) tandis que pour les jambes un niveau
supérieur (40-60 mmHg mais pas plus) a donné de
meilleurs résultats. Dans une autre étude, à publier
sous peu, le groupe du Dr. Damastra a utilisé le
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.
Un modèle de soins pour cas chroniques - une
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
soins interdisciplinaires et met l’accent sur
améliorations qui sont significatives sur le plan
SEINS VOLUMINEUXclinique. Le but visé est l’autogestion encadré par un
soutien. En phase aigüe, les patients sont traités dans
une clinique spécialisée avant de passer aux soins
ambulatoires puis à l’autogestion pour les soins
,OCAL 'ATINEAU 1# *6 4
Encart de l'Association Québécoise du Lymphoedème
page 3 Conférence ILF 2012
cont. de page 3
praticiens du réseau de soins de santé et de la
collectivité agiraient en interaction avec des patients
éclairés en vue d’obtenir de meilleurs résultats.
Robert Damstra a décrit un service néerlandais qui
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
Projet pour les enfants souffrant de
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
lymphoedème pour adultes en vue d’assurer une
transition facile vers le traitement pour adultes.
Pendant les congés scolaires, les services tiennent
une journée des jeunes pendant laquelle les
traitements sont analysés individuellement avec le
personnel médical. Des séances d’information et des
groupes de soutien pour jeunes d’âges similaires
sont prévus ensuite. Elle a rappelé qu’il était
important de prendre en compte les questions
psychosociales, de prendre le temps voulu pour créer
une relation de confiance, de faire preuve de
souplesse et de faire participer la personne à son
plan de traitement. Il faut laisser le jeune donner le
pas tout en encourageant chez lui le sentiment de
maîtrise et de pouvoir personnel.
Le drainage lymphatique manuel – quelle est
sa place dans le traitement du lymphoedème?
Est-ce que tous les patients souffrant de
lymphoedème devraient recevoir un drainage
lymphatique manuel (DLM) dans le cadre de leur
thérapie décongestive? Le consensus a semblé
indiquer que non: tous les patients n’en ont pas
besoin; tous les patients n’y ont pas accès et le
traitement est onéreux. Au Royaume uni, pour des
questions de remboursement, on est en train de
revoir les données probantes sur le DLM dans le
traitement Encart de l'Association Québécoise du Lymphoedème
traitement du lymphoedème lié au cancer du sein.
Dans les publications il est dit que le DLM améliore la
fonction contractile lymphatique ainsi que la qualité
de vie, diminue la fragilité capillaire et les niveaux de
liquide tissulaire mais les données probantes restent,
dans l’ensemble, ambigües.
D’après Devooght, le DLM, après un évidement
axillaire pour cancer du sein, s’il est effectué en plus
de l’exercice et de l’éducation, n’aurait pas plus
d’effet sur la prévention du lymphoedème que
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
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
Dr David Keast, Jill Allen, Anna Kennedy, Pamela Hodgson,
Rachel Pritzker, and Dr. Anna Towers page 4 Le lymphoedème de la jambe: perspective du patient et perspective des thérapeutes
Par Melissa, Dorit Tidhar et Maureen Adelman
Melissa, la patiente, écrit: "A l'âge de 10 ans, on m'a
diagnostiqué un sarcome d'Ewing. Cela fait 16 ans que
je suis en rémission. Je veux raconter mon histoire ici
pour créer une prise de conscience autour du
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
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.
informations des deux thérapeutes
nous ont
pas aidés
comprendre que les bandages de
compression n'étaient
pas efficaces. Nous avons demandé
à Melissa
de deux
montrer ses techniques d'autobandage:
de bandages ont été appliquées
sur à
mousse molle
enroulée du pied à l'aine. Le les
semblait léger
mais on a vu une plaque rouge
se former surn'étaient
frontal de la cheville.
montrer ses techniques
couches de bandages
ont été appliquées sur
enroulée du pied à
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
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
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
rapporté Québécoise
que le lymphoedème
Encart de ont
du Lymphoedème
chez certaines personnes, être déclenché ou augmenté
par le vol. De son côté, Graham 2002 a conclu que les
voyages en avion de moins de 4.5 heures seraient à
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
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."
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
Encart de l'Association Québécoise du Lymphoedème
page 7 Bottin de resources et
conseils pratiques
maintenant disponible.
Resource Guide & Tip
Sheets now available.
D eux perspectives… cont de page 5
Deux modifications ont été apportées à la technique
de bandage.
Afin d'effectuer un système de bandage efficace,
nous avons implanté la "loi de Laplace". Une couche
de matériau mou et doux a été ajoutée sous le
bandage et un protecteur de mousse de 1 cm
d'épaisseur est rajouté pour protéger le tibia, le haut
du pied et les malléoles, de façon à créer un cône.
Afin d’obtenir un bandage rigide et de maintenir une
tension égale au cours de toute l'application, les
bandages ont d'abord été tendus puis enroulés. La
région de la cheville a été bandée en position de
flexion, afin d'éviter que les couches de bandages ne
s'enroulent en marchant, ce qui causerait encore
plus de pression sur le tendon tibial antérieur.
Au fil du temps, tel qu'illustré dans le graphique 2, la
jambe de Melissa a encore diminué de volume.
Certains des résultats obtenus par la TAL se sont
maintenus et globalement, Melissa a encore perdu
du volume avant de se stabiliser de nouveau.
514-979-2643 /
[email protected] Voir les graphiques et photos dans l'article de
l'édition principale.
Soutien communautaire
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
Aimeriez-vous faire la différence?
Would you like to make a difference?
Nous cherchons d’aide avec:
We can use help with:
Événements spéciaux/Special events
Soutien bureau et téléphone/Help in the office
Traduction & rédaction/ Translation & editing
Animer groupe d’entraide/ Facilitate groups
Graphiques/Graphic design
Levée de fonds/ Raising funds
Encart de l'Association Québécoise du Lymphoedème
Joignez-vous à notre équipe.
On a besoin vos talents et votre
Join our team of wonderful people.
We can use your special skills and
514-979-2643 / [email protected] page 8 Atlantic Clinical
Lymphedema Network
Fall 2012
Therapist making a difference in Newfoundland
Teresene Walsh-Oakley is a Registered Massage Therapist (RMT), who
specializes in Complete Decongestive Therapy / Manual Lymph Drainage
(CDT/MLD), and Myo-Fascial/Scar Tissue release. Her clinic, Pro-Motion
Therapeutic Services, is a private practice situated in the New World
Fitness Building on Topsail Road in St. John’s, NL. Teresene (Terry) has
been a practicing massage therapist since 1999 and a lymphedema
therapist since 2004. She is a member of the ACLN (Atlantic Clinical
Lymphedema Network), LAO (Lymphedema Association of Ontario),
Board Member of NLMTA (NL Massage Therapy Association), CMTA
(Canadian Massage Therapy Alliance), and participant in the local
Lymphedema Support Group in St. John’s. She is a certified fitter for
compression garments, and a certified personal trainer.
The CDT/MLD portion of her practice encompasses approximately 50% of
the therapy provided to patients. Being the only private practicing
lymphedema therapist in the area, Terry consults and works very closely
with lymphedema nurse coordinators and therapists throughout Atlantic
Canada but especially with colleagues at the Dr. H. Bliss Murphy Cancer
Clinic at the Health Science Center in St. John’s. Lymphedema patients
are referred through nurse coordinators, physiotherapists, and various
doctors for treatment of both primary and secondary symptoms of
lymphedema. Terry encourages every patient she works with, provides
education, and teaches self management techniques for lymphedema.
It has been Terry’s experience that most patients who present with
lymphedema symptoms will have Myo-fascial restrictions and/or scartissue as well. Her primary goal for each and every patient is to provide
empowerment, education, and encouragement before, during, and
especially after each treatment. This promotes a positive experience and
enhances quality of life. It truly is a treatment that has a lasting effect
on the patient.
For additional information, contact Terry at
Pro-Motion Therapeutic Services
Telephone: 709-747-7766
e-mail: [email protected]
ACLN - page 1
Atlantic Clinical Lymphedema Network
Fall 2012
Lymphedema Surveillance
For lymphedema therapists, it is common
knowledge that it is easier to treat
lymphedema (LE) that is caught in the
beginning phase rather than later after it has
In a randomized controlled trial, Stout (2008)
found LE that was identified early through
surveillance programs could be well managed
and sometimes reversed.(1)
A lymphedema surveillance program is one
which identifies the individuals who are at risk
of developing LE and follows them at regular
intervals, in an attempt to recognize early
signs and symptoms of swelling. Ideally, presurgical measures should be available at
standard anatomical landmarks so that the
individual’s (lymphatic normal) baseline arm
measurements and weight are recorded.
More women are surviving breast cancer and
awareness of breast cancer survivorship
issues are increasing. Common impairments
and functional limitations due to breast cancer
treatment include upper extremity motion
restriction, fatigue, weight gain, pain, and
chemotherapy-induced peripheral neuropathy,
as well as lymphedema.
Recently in April 2012, a supplement to the
journal “Cancer” was published addressing the
common impairments that often follow breast
cancer treatment. “Supplement: A Prospective
Surveillance Model for Rehabilitation for
Women With Breast Cancer” includes sixteen
articles written by various prominent North
American breast cancer researchers.(2) These
articles outline the prospective surveillance
model, recommend it and discuss
implementation strategies as well as patient
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.
1. Stout Gergich NL, Pfalzer LA, McGarvey C, Springer B,
Gerber LH, Soballe P. Preoperative assessment enables
the early diagnosis and successful treatment of
lymphedema. Cancer. 2008; 112: 2809-2819.
2. Kathryn H. Schmitz, Nicole L. Stout, Kimberly
Andrews, Jill M. Binkley and Robert A. Smith et al.
Supplement: A Prospective Surveillance Model for
Rehabilitation for Women With Breast Cancer. Cancer.
2012;118; S8; 2187–2333.
Andrea Tilley, PT CDT
St. John, NB
Lymphedema Care Program,
Capital Health, Halifax, NS
The Lymphedema Care program at Capital
District Health Authority is located in the
Rehab Services Department in the Dickson
Building of Victoria General Hospital Site. The
client services are provided by an occupational
therapist and a physiotherapist who both have
certification training in Complex Lymphedema
Therapy. This is a multi-faceted program that
offers education for those at risk of developing
lymphedema; acts as a triage/liaison service
for those who wish to access treatment in
other parts of the province; and provides
treatment to clients experiencing
Once a month, an education and screening
session is offered to women who have had a
diagnosis of breast cancer and are at risk of
developing lymphedema post surgery and
radiotherapy treatments.
Clients are also seen on an individual basis
that have lymphedema as a result of cancer
for assessment and treatment.
Assessment and consultative services are
offered to clients/family/physicians regarding
lymphedema that is not related to a diagnosis
of cancer.
Audrey Deveaux, PT
Leanne Beaton, BSc OT
Halifax, NS
ACLN - page 2
Atlantic Clinical Lymphedema Network
Fall 2012
We are ready to meet your
home healthcare needs with a full
Mobile Medical
range of products and services.
Shoppers Drug Mart
Mastectomy Products
Compression Products
3430 Joseph Howe Drive
In home fitting and delivery
at no extra charge
Phone: 1(506)738-2351 or 1(800)830-1611
Cell: 1(506)636-1450 Fax:1(506)217-0211
Halifax, NS
Ph: (902) 443-6084
Fax: (902) 443-6294
Email: [email protected]
Carmel Sullivan
Email: [email protected]
Contact the ACLN
Shannon Andersen
[email protected]
(902) 893-5554 ext 2198
ACLN - page 3
Certified Lymphedema Therapists in Atlantic Canada
Nova Scotia
Shannon Andersen PT
Colchester East-Hants, NS
902-893-5554 ext 2198
[email protected]
Brenda Baxendale BSc, OT
Sydney, NS
902-567-8000 ext 2265
[email protected]
Leanne Beaton BSc, OT
Halifax, NS, 902-472-2151
[email protected]
Heather Lowe MSc, OT
Yarmouth, NS
902 742-3542 ext.1288
[email protected]
Sandra MacDonald RMT, CDT
Halifax, NS
[email protected]
Natalie Parker PT
Colchester East-Hants, NS
[email protected]
Natalie Bourque PT
Yarmouth, NS
902 742-3542 ext.1154
[email protected]
Julie Skaling PT, CDT
Kentville, NS, 902-678-3422
[email protected]
Audrey Deveaux PT
Halifax, NS, 902-473-2151
[email protected]
New Brunswick
Tammy Betts PT, CDT
Moncton, NB
[email protected]
Jackie Devoe PT
Sydney, NS
902-567-8000 ext 2196
[email protected]
Dana Harrison RMT, CDT
Kentville, NS, 902-687-3422
[email protected]
Christine Johnston PT
Truro, NS
902-893-5554 ext 2210
[email protected]
Amilyn Kearney BSc,RMT,CLT
Sydney NS, 902-539-1218
Ramona Kieser BHSc,PT, CDT
Sackville, NB, 506-536-8081
[email protected]
Myrna King BSc, OT
Halifax, NS 902-473-1257
[email protected]
Sophie Doiron PT, CDT
Moncton, NB
[email protected]
Louise Godin PT, CDT
Moncton, NB
[email protected]
Nathalie Hache PT, CDT
Lameque, NB
[email protected]
Nicole Hache PT, CDT
Caraquet, NB
[email protected]
Marie-Andree Legere PT, CDT
Fredericton, NB
[email protected]
Fall 2012
Manon Tardif PT, CDT
Campbellton, NB, 506-789-5017
[email protected]
Andrea Tilley PT, CDT
St. Joseph’s Hospital, St. John, NB
[email protected]
Linda Savoie PT CDT
Tracadie-Sheila, NB
[email protected]
Alanna Saulnier PT, CDT
Dept. of Physical Medicine
Charlottetown, PEI
902-894-2062, [email protected]
Heather Buckle PT, CDT
Health & Performance, Corner Brook, NL
[email protected]
Beverly Lanning RN, CLT-LANA
Regional Lymphedema Nurse
Central Heath, NL
[email protected]
Ingrid Lindner RMT, CDT
Labrador Massage Therapy Clinic
Goose Bay, NL, 709-896-3843
[email protected]
Janet Montevecchi RNBN, CDT
Breast Screening Centre, St. John’s, NL
[email protected]
Donna Parsons RNNP, CDT
Dr. Charles LeGrow Health Centre
Port Aux Basque, NL, 709-695-4500
Jean Ann Ryan RNBN, CDT
DHBMCC, St. John’s, NL
[email protected]
[email protected]
Laine MacKinley PT, CDT
St. John, NB
[email protected]
Martina Reddick RN, CDT
DHBMCC, St. John’s, NL
Kimberley Lombard MSc, OT
Shelburne, NS
902-875-4144 ext.284
[email protected]
Tara Mann PT, CDT
Moncton, NB
[email protected]
Teresene Walsh Oakley RMT, CDT
Pro Motion Therapeutic Services
St. John’s,NL, 709-747-7766
Cynthia Lohnes-Ferrolino BSc,RMT
Chester, NS
ACLN - page 4
[email protected]
[email protected]

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