Lymphedema Canada: Associations and Support Groups

Members of the Canada-wide lymphedema networking group
attended the Canadian Lymphedema Framework Conference
on Nov. 6, 2009 in Toronto.

From left to right:
Eunice Mooney (Sask.), Cathy McPherson (Lymphovenous Canada),
Edith Mulhall (Man.), Rachel Pritzker (Quebec), Anna Kennedy (Ontario),
Evelyn Tucker (Sask.), Catherine DiCecca (B.C.), Kim Avanthay (Man.), Diane Martin (Alberta).

ALBERTA:

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)

President Diane Martin is asking Albertans to sign a petition which calls on government to fund Complex Decongestive Treatment for all patients with lymphedema. She continues to meet with representatives of the Ministry of Health on this issue. Congrats to Diane and the Alberta Lymphedema Association for their continuing work in this area!!

For more information on the Alberta Lymphedema Association write 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

ATLANTIC PROVINCES

New Brunswick and Nova Scotia:

Andrea Tilley has been treating patients in the St. Joseph's Hopital Lymphedema Clinic, Atlantic Sciences, Saint John's, N.B. Note; There are a number of CDT therapists in the province including two in Moncton and two therapists in northern NB.

Newfoundland and Labrador:

Martina Reddick has been working as the Lymphedema Nurse Coordinator at the Cancer Care Program of Eastern Health since 2006. (Note: she is currently on leave and another staff person has taken over her position while she is away).

Martina Reddick was involved in a clinic trial with 3M™ Coban™ 2 Layer Compression System 2 Layer Compression System with good results treating upper and lower extremities. The results of this trial were reported at the 3rd International Lymphoedema Network conference in June of 2011.

The Eastern Health Lymphedema Nurse Coordinator travels extensively throughout the Province doing education sessions with health care professionals and those at risk for or living with lymphedema. There is a lymphedema clinic one day per week where patients are seen on a referral basis. One of their primary goals 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.).

In 2011 RN Bev Lanning was hired to co-ordinate services for individuals with lower limb lymphedema in central Newfoundland. You can contact Bev for more information at: bev.lanning@centralhealth.nl.ca

Prince Edward Island:

BRITISH COLUMBIA:

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

MANITOBA:

Contact Kim Avanthay at: kimavant@mymts.netto get involved with this newly established enthusiastic group.

Way to go and congratulations!!

ONTARIO:

The Lymphedema Association of Ontario

Once a year the group holds its annual general meeting in the fall. This group's newsletter is now part of a will be part of a national magazine "Pathways" which was launched in March 2012.

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.

This dynamic group was also co-sponsor, along with the Quebec Lymphedema Framework and the Canadian Lymphedema Framework, of the 2nd Annual meeting of the International Lymphoedema Framework meeting in June 16-18, 2011 in Toronto.

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

Note: Several Ontario lymphedema support groups have been established across Ontario through the efforts of the LAO (great work!)

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

 
• North Bay Lymphedema Education and Support Group. For more information call Susan Woodman at: 705-497-0683

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

 
• Breast Cancer Action Ottawa , 613-736-5921. BCA Ottawa 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 Sunnybrook Health Sciences Centre, 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: A Canada-wide Teletrain information and support program and parenting Teletrain Network for parents of children with lymphedema who want to share their experiences with other families going through the experience, has been established.

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 has been an exciting year for the LAQ. They are involved in a pilot project with 16 physiotherapists in oncology departments across the province to launch educational programs in anticipation of a provincial program in this area. The education program is focusing on risk reduction and compression, teaching self-management techniques if patients can't afford treatment. They are looking forward to participating in the national newsletter.

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:

OTHER GROUPS:

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:
Lymphedema groups on Yahoo can be located through the following address:
http://health.dir.groups.yahoo.com/dir/Health___Wellness/Support/Diseases_and_Conditions/Lymphedema?show_groups=1

Google Groups:
Lymphedema groups on Google can be located through the following address:
https://groups.google.com/groups/dir?lnk=nhpsfg&hl=en&q=lymphedema&qt_s=Search+for+a+group

Lymphedema People offers extensive links to lymphedema related articles and information as well as forums for discussions.

Lebuddies offers a chatroom, lymphedema videos, a lymphedema card to send to friends, and more.

Association of Cancer Online Resources-lymphedema list serve

Groups in other countries

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