Lymphovenous Canada: Happy New Year -
& welcome to the future!

In 2012 we saw many advancements in understanding and developing better treatments for persons with lymphedema. The most exciting of these was in the area of genetics.

Genetics - an emerging area of understanding

For many years researchers and those involved in the treatment of breast cancer survivors wondered why some individuals developed lymphedema while others did not. Publication of research by the University of Pittsburgh reported that mutations in the gap junction protein gene associated with primary lymphedema (GJC2-Connexin 47), are also implicated in increased risk for secondary lymphedema. This confirmed what many those people suspected: some breast cancer survivors may be pre-disposed to getting lymphedema.

In time a genetic test(s) may be available for individuals with breast cancer so that those who are predisposed to lymphedema can take precautions after receiving treatment to prevent lymphedema from developing. But we are still many years away from the day where our understanding of the genetics will lead to a cure. In the short term, our knowledge of the lymphatic system through this research will help us develop more targetted forms of treatment. For information on where to go to get genetic testing outside of the country visit our genetics page. (sorry - there are still no genetic testing services in this area for folks in Canada).

In the meantime scientists at the Stanford University School of Medicine have identified a set of proteins circulating in blood whose levels flag the presence of lymphedema. What this means is that individuals could potentially get a blood test to determine the presence of lymphedema long before it presents itself rather than relying on unreliable physical examinations. Exciting stuff!

Another positive development this year has been experimentation with the use of imaging which could potentially be done using cell phones, or other inexpensive equipment, to determine the effectiveness of treatments for persons with disabilities in a clinical setting. In the future I see these practices replacing older, less effective, methods to measure limb circumference.

Work continues on the Canadian Lymphedema Framework

In 2012 PATHWAYS - a new Canadian national publication on lymphedema was launched through the hard work of board members of the Canadian Lymphedema Framework (in particular Anna Kennedy), and the provincial lymphedema associations. I encourage you to contact your provincial lymphedema associations to arrange for a subscription to this excellent publication.

A contingent from Canada attended the International Lymphoedema Framework Conference, June 28 - 30, 2012 in Montpellier, France. For more information on this read the Fall 2012 issue of Pathways.

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 the Canadian Lymphedema Framework board and sub-committees continue to meet and push for greater awareness of this condition across Canada.

When will the lymphatic system stop being a poor cousin to other disorders?

At the risk of repeating myself, I continue to question why the lymphatic system continues to be a poor cousin to other disorders when it comes to funding laboratory research 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. This year reknowned scientist and champion Miles Johnston, will be retiring and I understand that the laboratory at Sunnybrook Health Centre which has worked on lymphatic issues will be closed down! Who will lead the charge in scientific research on lymphatic disorders in Canada when Miles is gone?

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

• A prevalence study to confirm the numbers of persons with lymphedema in Canada
• Stem cell research
• Genetic research
• Obesity and lymphedema
• Development of Canadian creening 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 continue to look forward to seeing progress in these and other areas in 2013.

C. McPherson
Manager & Admnistrator
Lymphovenous Canada