Lymphedema Canada: Associations and Support Groups

ALBERTA:

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: www.albertalymphedema.com

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
E-mail: lymphnet@telus.net
Tel: 403-281-9205 or 403-280-9467
Website: www.albertalymphedema.com

BRITISH COLUMBIA:

B.C. Lymphedema Association

The B.C. Lymphedema Association has been established in B.C. as an official non-profit organization. They publish a newsletter four times a year (which is available on their website). Attached is the Fall newsletter. You can also receive your copy(ies) by snail mail. If you wish to join the organization, but are unable to handle the membership fee, please contact them to discuss options.

B.C. Lymphedema Association BCLA Winter 2009-10 newsletter

B.C. Lymphedema Association Fall 2009 newsletter

For information on their activities visit their website at: http://www.bclymph.org/ or e-mail them at: info@bclymph.org

Congratulations on the liftoff!

MANITOBA:

Manitoba Lymphedema Support Group

A Manitoba support group has been established. Contact Kim Avanthay at: Kimavant@mts.net or Edith Mulhull at: ed.mul@hotmail.com for more information in this area.

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.

NEW BRUNSWICK AND NOVA SCOTIA:

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: llmacdon@nbnet.nb.ca

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.

NEWFOUNDLAND AND LABRADOR:

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: martina.reddick@easternhealth.ca

ONTARIO:

The Lymphedema Association of Ontario

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

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

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
E-mail: lymphontario@yahoo.com
Web site: www.lymphontario.org

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: wwww.bcakingston.org

 
• 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 other 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.

QUEBEC:

Association Québécoise du Lymphoedème/ The Lymphedema Association of Quebec (LAQ)

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:

AQL/LAQ
Mailing address: 6565 St. Hubert, Montréal, QC H2S 2M5
E-mail: aql@infolympho.ca
Web site: www.infolympho.ca
Telephone number: 514-979-2463

SASKATCHEWAN:

Saskatchewan Lymphedema Learning Association (SLLA)

OTHER GROUPS:

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: Deewestlake@aol.com

Yahoo Groups:
The mailing lists formerly hosted at onelist.com have moved to Yahoo! Groups at: http://groups.yahoo.com/ Lymphedema groups found in this section can be located at the following address:
http://health.dir.groups.yahoo.com/dir/Health___Wellness/Support/Diseases_and_Conditions/Lymphedema?show_groups=1

See also: