If you have just been diagnosed with Waldenstrom’s Macroglobulinemia, you are probably under shock and are looking for guidance as to what  your next steps should be. This reaction is naturally very normal and the Waldenstrom’s Macroglobulinemia Foundation of Canada (WMFC) wants to help.  The WMFC website provides up to date information on WM and most importantly provides a support network of fellow WM patients.  From this moment on, YOU can make a difference, starting with getting the best information available and your WMFC is here to support you through your journey.

Next steps:

Join the WMFC.  It costs nothing and the benefits are unlimited.  All members receive regular Newsletters, and information on educational forums and opportunities to contact and interact with other WM patients and volunteers.

Next, click on Canadian Lifeline below and connect directly with a WM patient/volunteer who will be pleased to use their knowledge and experience to talk to you about WM and they will attempt to answer any questions that you might have.  We offer this Canadian Lifeline through our many volunteers because we know that the consultation really works and helps people with their understanding of WM and assists in making difficult decisions.

Should there be a Support Group in your vicinity, we also encourage you to contact the Support Group Leader for advice.  WM is a very rare disease and we all know just how difficult it is to find other WM patients to talk with and by so doing, improve your comfort level and share your concerns.

Lastly, sit down and take a deep breath.  You are about to embark upon a voyage of discovery and understanding that you probably did not know that you even had in you.  By continuing to read through the pages in the About WM portion of this website, you will initiate your first steps in the learning process about WM.  Having a basic understanding of WM will allow you to communicate with your Oncologist and make decisions more knowledgeably.

Interesting Facts about WM:

  • WM is a very rare form of cancer.  In fact, in North America, only 4-6 people per 1 million are diagnosed with WM each year.  In Canada, that means only 150 people are diagnosed each year and there are approximately 1500 patients in total.  In the U.S., there are only approximately 1500 cases diagnosed each year.  So, every one of us counts.

  • Waldenström macroglobulinemia (WM) is a rare, slowly progressing (ie indolent) sub-type of B-cell non-Hodgkin lymphoma (NHL) characterized by monoclonal IgM gammopathy in the blood and infiltration of the bone marrow by clonal lymphoplasmacytic cells.

  • The cause of WM is still unknown.  It is not infectious and cannot be passed onto other people.

  • Traditionally viewed as a disease that affects people over the age of 65, it is now increasingly seen in younger age groups.  WM is more common in men than women.

  • WM is currently incurable; however, it is treatable.  Significant progress has been made in the treatment of WM through research that has dramatically increased the life expectancy of WM patients, as well as their quality of life.

  • Life expectancy has increased significantly after initial diagnosis, with many patients living 15-30 years with WM.

  • We are all unique.  We all have different combinations of symptoms and all react differently to drugs and to the various treatment options.  This is one of the many challenges hematologists face in diagnosing and treating this disease and the main reason you must have a basic understanding of its peculiarities to enable you to participate in the treatment decisions.

  • One could have WM for years without having any symptoms.  It is quite common for your GP to identify a peculiarity in your blood work following your annual review and refer you to a hematologist, only to find no treatment is necessary for years (sometimes called Watch & Wait).  Early diagnosis is quite often not critical for WM patients.

  • Many WM patients enjoy a normal life of travel, sports, hobbies, and many others continue to work, with their quality of life and life expectancy improving daily.

  • WMFC has over 20+ volunteers/WM patients ready to discuss living with WM and various treatment options, all just a phone call away:  Canadian Lifeline

  • WMFC, an affiliate organization of the IWMF (the International Waldenstrom’s Macroglobulinemia Foundation, https://iwmf.com/), is dedicated to supplying hope, information  and support for everyone affected by WM.  WMFC is your source for the most comprehensive information on WM in Canada.  Combined, the two organizations contribute millions of dollars to research, searching for a cure for WM.

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