Lymphedema Support Group

Lymphedema is a condition of localized fluid retention caused by a compromised lymphatic system. The lymphatic system (often referred to as the body's "second" circulatory system) collects and filters the interstitial fluid of the body. Lymphedema has been barely recognized as being a serious health problem; however, this is slowly changing due to education and awareness.

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knee replacement surgery with lymphdema

Some of you may remember me. I had my knee replacement surgery on June 22. I have lymphdema in both legs, and the surgery look place on my left.
I was so worried about how the operation could affect my dema. None of the doctors or nurses are too familiar with it, and I felt very alone and confused.
Do I get the surgery? It got to the point that even going grocery shopping was a real challenge, my quality of life had been greatly reduced. However, I knew the surgery could intensify the dema, and infection was a big risk. But if I didn't get the surgery, I would surely be in a wheelchair within a year.
I seen a massage therapist before the operation, who gave me a series of massages in an attempt to reduce the swelling. It helped a bit, but the cost was too much. I simply could not afford to keep up with the massages.
I had the surgery, and instantly my legs swelled greatly. Doctors, surgeons and nurses weren't concerned. The day after surgery I started physio for my knee. This was were problem first arose. Because my legs were so swollen, it was difficult to have any bend at al. But they released me from hospital and said I was doing great.
Two weeks later, I went to get the staples removed and they noticed my knee was infected. Went on antibiotics. Had it checked after the course of medication, and it was still there. Seen my family doctor, and he said that I had to start wearing my compression stockings immediately (even though I was told by surgeon not to). Family doc said that my operated knee was no stiff and heavy that red patches were forming under the skin, and I would start to leak soon (not sure what this means). So the stockings helped on my non-surgery leg, by the leg that was operated on... my foot is so fat. It looks like you blew up a rubber clove, my knee is extremely swollen that again it is hampering my exercises to strengthen the knee, and the swelling is not going down at all. I am scared... I'm doubtful that my new knee is going to get the strength back, my dema is worse and the family doctor and surgeons think differently about dema (However, both admitted they don't know a lot). There are no clinics within a 1000 miles, there are no doctors that specialize in dema and there is ho help or support.

Any suggestions



Hi there - I replied to you in the form of a hug. I can't offer much help other than my prayers for you, and those, rest assured, you do have.


I found this on the internet for lymphedema connections throughout the Canadian provinces:

Lymph Canada: Lymph Associations and Support Groups
Let us know if there is a support group in your area or if you want to start one. Please note that this page is reserved for not-for-profit groups only. Drop us a line at: and we will put you on this page.


The Alberta Lymphedema Association
Funding for garments for Alberta children with lymphedema offered by ALA:

The Alberta Lymphedema Association has funding to assist parents of children with lymphedema in Alberta to buy sleeves or leg garments. or more information contact the ALA at:

Other News:

The Alberta Lymphedema Association is calling on the government to cover lymphedema treatments (MLD) for all patients with lymphedema - including those with primary lymphedema. Patients with primary lymphedema are not able to access the treatment programs available in Alberta's two major publicly funded lymphedema clinics at the Cross Cancer Treatment Centre in Edmonton Alberta (although patients with primary lymphedema may get an assessment here) or at the Tom Baker Cancer Clinic. (see the Alberta Treatment page for more details in this area)

Diane Martin of the Alberta Lymphedema Association met with the Minister of Health in March 2009 to discuss providing patients with primary lymphedema the same access to treatment as those who have lymphedema as a result of cancer. She also asked that the government that Complex Decongestive Treatment be provided for all patients with lymphedema in Alberta.

Says Martin, "The government agreed to pay for a one time assessment for primary patients. The primary patients will be sent to wound care treatment centres if they need it, and will also be able to take an exercise class paid for by the government if they want to. The Health Minister told us that he would have Alberta Health Service look into paying for primary patients as well." Congrats to Diane and the Alberta Lymphedema Association for their continuing work in this area!!

Vodder trained massage therapists and other MLD specialists continue to provide treatment to persons with both secondary and primary lymphedema in the province. Notes Linda Moore Massage Therapy in Lethbridge, "Our clinic has been providing Dr. Vodder School International certified lymphedema management in Southern Alberta since November 2005. Treatment for primary and secondary lymphedema is by physician's referral only. Information and consultation regarding lymphedema and treatment may be obtained by appointment and without referral. Funding for treatment for cancer related lymphedema, on the basis of financial need, may be available through the Alberta Cancer Board on a case by case basis.

In early 2009 it was announced that the Tom Baker Cancer Centre in Calgary would be providing treatment for cancer patients in the hospital setting. A physiotherapist and occupational therapist were hired to take over treating cancer lymphedema patients using the protocol that the Cross Cancer Institute uses in Edmonton Alberta. The Centre indicated it would not, however, be providing treatment for patients with primary lymphedema because of space, money and staff constraints. The Tom Baker Centre will be permitting GP's to provide a referral note to enable patients with secondary lymphedema to get treatment at their centre, in addition to their surgeon or oncologist, as was previously the case.

President Diane Martin is asking Albertans to sign a petition which calls on government to fund Complex Decongestive Treatment for all patients with lymphedema.

For more information on the Alberta Lymphedema Association write President Diane Martin at 55 Brookpark Crescent S.W., Calgary, Alberta T2W 2W6
Tel: 403-281-9205 or 403-280-9467


B.C. Lymphedema Association
The B.C. Lymphedema Association has been established in B.C. as an official non-profit organization. For information on its activities contact: Lynn Holloway Congratulations on the liftoff!


Manitoba Lymphedema Support Group
A Manitoba support group has been established. Contact Kim Avanthay at: or Edith Mulhull at: for more information in this area.

Report back on the November 2004 Manitoba Lymphedema Meeting
by Edith Mulhall, MLD therapist

The Seven Oaks Hospital in Winnipeg held its annual wound care conference November 2004. The focus topic was "Lymphedema - the Silent Epidemic in Wound Healing". The evening of November 3 was open to patients, families, supporters, and any members of the public who wanted to know more about LE. About 70 people attended. November 4 was designated for health care professionals, and the audience of about 70 was made up of nurses, physiotherapists, chiropractors, massage therapists, and various other medical support disciplines.

Dr. Brian Kunimoto, a dermatologist from Vancouver General Hospital, was our guest speaker for the event. His relaxed, easy style was enjoyed by everyone. On Wednesday evening he presented the causes of LE, the sequence of events that take place in a patient's body when LE develops, and also the complications that can result if proper management is not maintained. A vigorous question period followed, and several patients presented personal concerns. We had excellent feedback from the patients and their families.

The professional's conference on November 4 proved to be equally beneficial, again reviewing briefly, the anatomy and physiology of the lymphatic system, and how it interacts with the venous and arterial network. Because the lymphatic system is greatly under-emphasized in most medical studies, there were many "ah-ha" moments, and many of my nursing colleagues indicated that they realized an awareness of a body function that they had been totally ignoring.

At the close of the professionals' day, a local patient spoke to the delegates about what it is like to live with LE. He developed LE as a result of surgery, when he was in Europe a number of years ago. He was very fortunate to have a doctor who sent him to the Foeldi Clinic in Germany, where he made an excellent recovery. The most difficult part of his recovery, however, was when he returned home, and tried to find treatment in Canada.

At that time, qualified therapists were rare. During his 45 minute presentation, it became very clear that getting the help one needs, be it from the medical convention or from insurance companies, is at times a greater handicap than having LE. Many of the health care professionals present said they felt this was one of the most powerful aspects of the entire conference, and that they hoped this would greatly increase awareness and subsequent support for those living daily with this condition.

Many thanks to Connie Sarvis, RN, co-ordinator of wound care services at Seven Oaks Hospital, for organizing this event; to Dr. Brian Kunimoto for an excellent presentation; and to the local patient for sharing his life experiences to help us all understand lymphedema a little better.



Greater Moncton Support Group
The greater Moncton Support Group has disbanded. We will keep you posted if we hear of any new group which springs up.

East Coast Group Wants You!
Calling all folks on the east coast (New Brunswick, Nova Scotia, P.E.I., Nfld. et al)! If you would like to get involved in an east coast group write or phone: Lin MacDonald, 10 Bremerhaven Crt., Island View, New Brunswick, E3E 1A3 (506) 455-4150 or send her an e-mail at:

Lin and Vivienne Anderson have co-founded The Lymphedema Support Group of New Brunswick. Congrats and keep up the fabulous work - hope you succeed in getting more treatment options established out there.



News from Newfoundland and Labrador: The Lymphedema Roadshow
In 2004 the Lymphedema Roadshow - spearheaded by Pamela Hodgson, a registered massage therapist and graduate student in community health - was developed in response to concerns raised by women who participated in the bi-weekly Breast Cancer Support Teleconference Network. Women expressed the need for up-to-date information on post-mastectomy lymphedema for themselves and their families, and for the health care practitioners who treat them. The Roadshow was funded by the Canadian Breast Cancer Foundation - Atlantic chapter, with additional funding from Jobst Canada.

Over 15 presentations in 8 different towns across the province were held. Workshops were about one hour in length for public and for health care providers were held in a number of locations around the province. Workshops were specifically geared to each group but both sets of workshops provided information on symptoms, risk factors, prevalence and management of the condition. Health care practitioners, doctors, nurses, occupational, physical, and massage therapists demonstrated keen interest. This initiative ended in June 2005.

Martina Reddick, Lymphedema Nurse Coordinator at the Dr. H. Bliss Murphy Cancer Centre was hired on permanently as the Lymphedema Nurse Co-ordinator with the Cancer Care Program of Eastern Health in 2006, and is now carrying the torch in this area.

She was drawn into the program through a lymphedema roadshow organized in 2004 by Pamela Hodgson, a registered massage therapist and graduate student in community health, who developed it in response to concerns raised by women who participated in the bi-weekly Breast Cancer Support Teleconference Network. Women expressed the need for up-to-date information on post-mastectomy lymphedema for themselves and their families, and for the health care practitioners who treat them. The Roadshow was funded by the Canadian Breast Cancer Foundation - Atlantic chapter, with additional funding from Jobst Canada.

Over 15 presentations in 8 different towns across the province were held. Workshops were about one hour in length for public and for health care providers were held in a number of locations around the province. Workshops were specifically geared to each group but both sets of workshops provided information on symptoms, risk factors, prevalence and management of the condition. Health care practitioners, doctors, nurses, occupational, physical, and massage therapists demonstrated keen interest. This initiative ended in June 2005.

Martina continued to carry the torch through a pilot project funded by the Canadian Breast Cancer Foundation - Atlantic chapter throughout 2006 before her position was made permanent.

Martina has travelled extensively throughout the Province doing education sessions with health care professionals and those at risk for or living with lymphedema. She has a lymphedema clinic 1 day per week where she sees patients on a referral basis. Her primary goal is to educate patients in prevention as well as how to manage their lymphedema if it develops (ie what to do, where to seek help etc.). If you require any further information Martina can be reached at 709-777-8713 or by email at:



The Lymphedema Association of Ontario
Mark your calendars for the Launch of the Canadian Lymphedema Framework Nov. 6, 2009 and the LAO LYMPHEDEMA 2009 Annual Conference Nov. 7 2009. Both events will be taking place at the Canadian National Institute for the Blind (CNIB). The LAO's annual lymphedema conference is an educational and awareness event targetted at those living with lymphedema, those at risk and all health care professionals. Check out this flyer for information on an expanded event including more speakers, workshops, a bigger venue and additional speakers or call the LAO at 416-410-2250 for more details.

The Lymphedema Association of Ontario is a support group for individuals, families and health care professionals with lymphatic disorders such as lymphedema. LAO has opened an office to provide better visibility within the community. Congratulations!

Once a year the group holds its annual general meeting. It also puts out a newsletter three times a year. The Association is currently trying to improve ADP program coverage and improve coverage for CDT. It has a resource kit to help people advocate for improved services and an information package on how to get better insurance coverage.

Two publications are currently available which outline the results of LAO's "Lymph Listens - A community based report on living with lymphedema in Ontario" program. They are:

Picture poster
Final Report - Lymph Listens
Anna Kennedy (right to left) with youthful members of Team Lymphedema Shannon Moore, Sydney Wilson, Jocelyn Kennedy and Emma Coverdale who helped out at its 2008 annual conference on Oct. 4, 2008 at the Sunnybrook Health Sciences Centre. Approximately 200 people attended the conference.

For more information for this event and other information contact the LAO at:

Lymphedema Association of Ontario(LAO)
4161 Dundas Street West
Toronto, Ontario M8X 1Y2
For information call: 416-410-2250 or toll-free at: 877-723-0033
Web site:

Note: Several Ontario lymphedema support groups have been established across Ontario -

Kingston Lymphedema Support Group, established under the auspices of Breast Cancer Action Kingston, 613-531-7912 or visit their website at:

Kitchener-Waterloo Support Group, meets in the Victoria Room, Victoria Place, 290 Queen Street South, Kitchener, on the last Tuesday of every month at 7:00 p.m. To register call Melody Southgate at: (519) 653-2101

North Bay Lymphedema Education and Support Group, at the Emanuuel United Church. For more information call Susan Woodman at: 705-497-0683

Oshawa Lymphedema Support Group, at the Hearth Place Cancer Support Centre, 905-579-4833

Oshawa Support Group, This Heath Place Cancer Support Centre Group, (86 Colborne Street W.) meets every third Thursday evening of the month from 7 p.m. For more information or to register call Heath Place at 905-579-4833.

Breast Cancer Action Ottawa , 613-736-5921. BCA Ottawa has just received a Community Health Promotion grant from the Canadian Breast Cancer Foundation to undertake a two year outreach project which includes lymphedema-related exercise and education. The LAO is a member of its project steering committee. For information on dates and times for this group call: 613-736-5921

Toronto Lymphedema Information and Support Group, at Wellspring - Sunnybrook Health Sciences Centre. Anne Blair, a registered nurse with Sunnybrook and Ruby Kreindler, a trained social worker, are the facilitators of this support group, sponsored by the LAO in connection with Wellspring. For more information and to register call LAO at: 416-410-2250 or toll free at: 877-723-0033
Also: Canada-wide Teletrain information and support program and parenting TeletrainNetwork for parents of children with lymphedema want to share their experiences with othe families going through the experience.

For more information on any of the above programs and to register, please call the LAO at 416-410-2250 or 877-723-0033 toll free.



Association Qubcoise du Lymphoedme/ The Lymphedema Association of Quebec (LAQ)
The Dragon Boat experience - Quebec style!
Highlights from the First Montreal International Lymphedema Congress May 28-30, 2003
This group is currently attempting to have lymphedema treatments covered under the government health insurance plan. Membership entitles individuals, among other things, to $10.00 reduction off the purchase price of a MedicAlert lymphedema alert bracelet.

Monthly support group meetings of the Lymphedema Association of Quebec are held on THE LAST TUESDAY OF EACH MONTH. Check the LAQ web site or e-mail them for the time and location of these meetings.

For more information on these and other activities of the Lymphedema Association of Quebec:

Mailing address: 6565 St. Hubert, Montral, QC H2S 2M5
Web site:
Telephone number: 514-979-2463



Saskatchewan Lymph Learning Association (SLLA)
The Saskatchewan Lymph Learning Association (SLLA) was formed in March 2004. They are in the process of developing their by-laws and mission statement. The SLLA is a support group and information network. For more information on how you can help out contact Eunice Mooney or Pat Dressel at:

The Klippel-Trenaunay Support Group of Canada
The Klippel-Trenaunay Group is a world-wide organization which has a number of Canadian members.

A Canadian group has formed which is incorporated as a charity, with non-profit charitable status. The Group is launching an awareness campaign for Canada to educate the medical community and compile a physicians list of doctors familiar with treating Klippel-Trenaunay Syndromes. To get involved with this Canadian support group contact Executive Director Denise Demeter-Westlake at:


Online Lymphedema Support/Chat Groups:
Many of these groups provide a place to people to meet and find encouragement, and also offer articles and links for further information and support.
Yahoo Groups:
The mailing lists formerly hosted at have moved to Yahoo! Groups at: Lymphedema groups found in this section can be located at the following address:

See also:

Lymphedema Talk at:
Lebuddies (previously a chat group) now have a web site: where they offer and offer a chatroom, lymphedema videos, a lymphedema card to send to friends, and more. Check it out!
New-York-State- Lymphedema- Network Support Group - a group for New York State Lymphedema patients, therapists, doctors, nurses, family, friends, etc.: For more information on this group contact, Anne Amsdill, Co-owner, at:
Lipodema chat group at:
Children with Lymphedema chat group at: To subscribe e-mail:
All About Lymphangiectasia at: To subscribe e-mail:
Lymphedema Art Journal:
This site was created in response to the need for a place for people with lymphedema to go to post how they feel about Lymphedema through their art. People can post either visual or written art one of two ways: (1) They can sign up as a contributor by clicking on the "Sign Up" button on the website and email their request. Site manager Julie M. Ellis will reply with an invitation to the group; or (2) they can click on the "Sign Up" button and email their artwork and she will post it for them.

Association of Cancer Online Resources:

Breast Cancer Action Nova Scotia Discussion Forum:
Online since 1996, this grassroots, volunteer-run site has one of the most active discussion forums on the internet (in excess of 2000 breast cancer related messages a month). You can get to the discussion forum through their web site at, or directly at

mIRC IRC Chat Program - download at

PIRCH IRC Chat Program - download at


Groups in other countries

Please see our list of links to other lymphovenous and lymphedema sites.


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Last revised July 2, 2009.

Hi. I am so sorry to hear about your condition and most of all about the fact that you're having a hard time getting help. But good news! I have a few solutions for you. I work for Farrow Medical Innovations. We are a manufacturer of edema garments. They work great and are MUCH easier to apply than compression stockings. We have great success reducing lymphedema in our patients! If you would be interested in learning about our products, our website is Also, feel free to give us a call toll free at 1-877-417-5187 or our local number at 979-822-9120. We have a very knowledgeable staff and would be glad to help you. We are based in Bryan, TX and our office hours are M-F 8am-5pm CDT. We look forward to hearing from you and helping you!

Best wishes,

Lymphedema and knee replacements don't mix. That's why I haven't had mine done, even though my joints are bone on bone. Sorry to hear of your postoperative problems and hope you'll find solutions.

How are you doing? Have you found any help managing your postoperative problems? Keep in touch and let us know. We care about you.
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