Lymphovenous Canada: Happy New Year - our accomplishments and where we need to go in 2012

2011 was an exciting year for Canadians who are trying to promote understanding and better treatments for persons with lymphedema in this country.

The Canadian Lymphedema Framework got off the ground in a big way! A first for us: Canada hosted the 3rd Annual meeting of the International Lymphedema Framework through the hard work and sponsorship of the Canadian Lymphedema Framework, and the lymphedema associations of Ontario and Quebec. (Mark your calendars: The 4th Annual meeting of the ILF is taking place in June in Monpellier, France).

It is exciting to see Canada take its place with others around the world (who are also establishing lymphedema frameworks) to increase awareness and improve access to treatments by persons with lymphedema around the world!!

Dedicated people from lymphedema associations in provinces across the country continued to hold monthly cross-canada phone calls to keep each other informed of what was going on in each province, and make plans for a national magazine to be launched in Feb. 2012.

On the down side - while there is no question that a lot was accomplished last year- we still have a very long way to go before people with lymphedema in Canada get adequate care and treatment. Although there is more awareness of breast-cancer related lymphedema and services to provide information and support for this population, individuals with lymphedema caused by other types of cancer or primary lymphedema are finding themselves with few, if any programs available to them. Many individuals are struggling to cover the costs of compression garments and bandages to keep their conditions under control.

In the U.S. there are now places individuals can go to get genetic testing to determine whether their children or other members of their families are pre-disposed to getting lymphedema. Why do we not have genetic testing for lymphedema here in Canada?

We are fortunate to have several researchers in this country who are undertaking some cutting edge community-based research in this area which gives us new information in this area. They include: Margaret McNeeley at the University of Alberta/Cross Cancer Centre in Edmonton; Dr. Anna Towers in Montreal; and Roanne Thomas-MacLean from Saskatchewan (who is now the Canadian Research Chair of Quantitative Health Research with Marginalized Populations with the Canadian Institutes of Health Research)with many others now coming on board.

We can all be proud of UBC Rehabilitation Professor Susan Harris (now retired) who was the first in the world to challenge the myth that breast cancer survivors with lymphedema should not undertake physical activity, though her 1999 research study on Dragon Boats.

I still remember the conference I attended in Montreal many years ago where Professor Harris was harangued for promoting evidence-based research on lymphedema. When I came back from that meeting I said to my husband and friends - "Can you believe it - there are people who are actually opposed to evidence based scientific research in this area?" Thank goodness we hear less of that type of talk and more acceptance of credible research studies. When I go to conferences now people are asked to declare any conflicts of interest - and encouraged to undertake randomized studies where possible - as they would when they are doing research in any other area.

When it comes to laboratory research, the lymphatic system continues to be a poor cousin to other disorders when it comes to this type of funding in Canada. I am saddened when I hear of bright, dedicated researchers going elsewhere or finding different careers because they cannot get support for their work.

It is to the dedication and sacrifice of laboratory researchers such as Miles Johnston, Toronto (lymph node transplants), Pierre-Yves von der Weid, Calgary (use of drugs to control lymphedema), Professor Jack Hay, and others that any laboratory work at all is being done in this country.

My wish list of studies that I would like to see carried out in this country (in addition to what is currently underway) would be:

• Prevalence study to confirm the numbers of persons with lymphedema in Canada
• Stem cell research
• Genetic research
• Obesity and lymphedema
• Screening tools for early diagnosis and treatment of lymphedema
• Comparative research on surgery and its effectiveness in controlling lymphedema

As a member of the Canadian Lymphedema Framework's research sub-committee I look forward to seeing progress in these and other areas in 2012!!

C. McPherson
Manager & Admnistrator
Lymphovenous Canada