photo credit: Connie Archibald; the writer (right) is pictured with her daughter Christiana

by Connie Archibald

I am the mother of a daughter diagnosed with primary lymphedema at the age of 22.  I have been researching and following the progress in awareness and education that has been developing with the help of LE&RN and Kathy Bates. This awakening in awareness is such an exciting development, but I feel that so much more needs to be done. When my daughter was diagnosed, our family physician simply told us that she knew nothing about lymphedema, and she did not offer to help us learn more. This lack of knowledge can be devastating.

My daughter Christiana traveled to Jamaica and Finland after spraining her ankle and without the knowledge she needed to prevent swelling. By the time she returned home to New Brunswick and was seen by a vascular surgeon, significant damage had been done. Even the vascular surgeon appeared disinterested and did not provide any education or information. Everything that I needed to know was researched on my own. I am afraid to think what would have happened if I had not been aggressive in seeking answers!

While researching on my own, I discovered that there were only two private Registered Massage Therapists (RMTs) in the Province of New Brunswick with advanced manual lymph drainage training using the Vodder technique.  Christiana was treated by one of the private RMT’s and this person was exceptionally knowledgeable; however, the RMT practices almost two hundred kilometers away. Although Christiana is followed by a Physiotherapist within our health care system; primarily only measurements for compression are provided, and MLD which is a critical part of treatment, is not provided. The physiotherapist advised that there were too many people for her to see and that her regular patients were diagnosed with secondary lymphedema.

At this time my daughter’s condition is being managed quite well, although MLD is not offered in our health care system for primary lymphedema and her current private health plan is not covering the compression garment. The lack of insurance coverage is a terrible problem in both Canada and in the United States.

I realize that the US Senate has proposed $70 million in lymphatic research and I hope that this is successful. Canada is a country of only 35 million (about the same population as California) and the US a population of over 300 million, so Canada always benefits from innovation and research coming from the United States. Demands for change are happening in Canada as well. In December 2015, members of the lymphedema community in Canada came together and drafted a letter to the Prime Minister of Canada, Justin Trudeau, appealing for a commitment to review how lymphedema treatment is covered and to request equitable financial support be available to all lymphedema patients across Canada.

There are many emerging treatments and it is my hope that when a patient is diagnosed, particularly with primary lymphedema, that there will be a treatment plan and education for every patient.  I refer to primary lymphedema because in Canada secondary lymphedema patients receive treatment through the health care system. My daughter is only 25 years old and I am hopeful for a cure in her lifetime. Thankfully, she does not allow the lymphedema to define her life and currently has plans to complete her Master’s Degree, to travel, and to remain active.

I am pleased that Kathy Bates has become the spokeswoman for lymphedema and that she has been successful in obtaining much-needed research funding. I also correspond regularly with Andrew Matta, who spoke in New York at LE&RN’s Walk to Fight Lymphedema & Lymphatic Diseases at the Brooklyn Bridge. He is now President of the Ontario Lymphedema Association and a great advocate. It is through people like these that I believe we will begin to see real change.