Over the years I have written quite a bit about my experience with lymphedema - secondary lymphedema in my right thigh, from surgery for melanoma skin cancer. Lymphedema (lim-fa-DEE-ma): lymphedema is a lifelong condition caused by a buildup of lymph fluid. This happens when the lymphatic system is either faulty or damaged and cannot function as normal. It leads to chronic swelling in the tissues where the lymph flow is blocked.* I've dabbled in pursuing treatment for this but will admit I have not yet established ongoing management of it. Still on my to-do list. Mike also has lymphedema, from the same surgical procedure for melanoma, but it settled more in his foot.
In any case, having bolstered a bunch of melanoma-related patient support and education initiatives with Save Your Skin Foundation and on my own over the years, I am now adding a lane, and lending a hand with lymphedema patient support. Recently I have joined a team in Prince George who are planning a Lymphedema Education Conference later this year for Physicians and allied HCPs in the Northern Health region of BC. I am happy to be working with an esteemed local Physiotherapist who is leading the initiative; I will support with my event planning and tech experience.
Not only am I learning more about lymphedema, and the needs of patients, but through this project I am learning more about the health care system in our region, and the access to resources that Physicians may or may not have.
Our group is excited to be planning this informative event, which will consist of a full day for Physicians, including a lymphedema care doctor guest speaker from Ontario, and then a half-day for allied health care providers on lymphedema care and bandaging, etc. While planning all of this we are learning about the process of hosting - and funding - an accredited conference for Physicians. It's a big undertaking! But a necessary one, as continuing lymphedema education fights for attention just as many other medical infirmities have to.
View this video from Shirley Bond, MLA, Prince George-Valemount speaking about World Lymphedema Day and the local work and recent initiatives underway in our area:
I'll update with more information when I can, but in the meantime, I'll end with a shout-out to the 1 million Canadians impacted by lymphedema and bid them a healthy Lymphedema Awareness Day.
For more information, please check out the Canadian Lymphedema Framework, and/or the lymphedema association in your province:
Well done Natalie, as patients we need more info on this subject rather than like what the Dr told me when I commented on the fact that he never told me I could end up with Lymphadema after his surgery. I asked him about this swelling that wont go away and told him another dr had told me that was lymphadema. His response: Of course it is! End of subject. No knowledge, no treatment, nothing.
ReplyDeleteIndeed - maddening, and negligent. Our surgeons' approaches to the same procedure were SO different. I think you would be the perfect patient to share your story on our panel at the Lymphedema Education Day. I'll be in touch!!
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