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Ed Forum 2016

Newly Diagnosed?

Peter DeNardisBeing diagnosed with WM is not an end – it’s a beginning!  Before reading further about all the information that the IWMF provides to help you deal with WM, we encourage you to take a couple of minutes to watch a short video (click on the photo on the left).  In the video, Peter DeNardis reflects on the impact the diagnosis has had on him and his family, and how he and others in the IWMF community are able to thrive in spite of, or perhaps even because of, the disease.   Peter was first diagnosed in 2003 at the age of 43, and has had multiple relapses since them.  Still, he finds time to maintain his full-time job, volunteer for the IWMF, and pursue his hobby of amateur wine-making.

We understand that this is a very difficult time for you. Not only are you, your family and your friends experiencing the gamut of different emotions that come with a cancer diagnosis, but there is so much new information to learn. Where do you begin? The IWMF is here to help.

Initially, you will need to learn some basics about Waldenstrom’s macroglobulinemia (WM), sometimes referred to as a lymphoplasmacytic lymphoma (LPL). Be sure to check the FAQ (Frequently Asked Questions) booklet for several of the most-asked questions about all facets of the disease. It will also be helpful for you to understand the medical tests and their results which are performed to help diagnose and monitor your disease. The IWMF website and our publications are up to date, patient-centered resources. We have been where you are now, and therefore are dedicated to providing you with the essential tools of support and education to feel empowered as you begin to understand and live with this rare disease.

We’ve created a comprehensive packet of information (Info Pak) specifically for you, the newly diagnosed, which includes the most up to date, easy to understand publications on the disease, medical tests, treatment options, second opinions, and selected introductory videos by experts in WM from our Educational Forums. The Info Pak also contains a list of IWMF services to help patients and their caregivers understand and cope with WM, including a network of Support Groups, our online forum, and our telephone support LIFELINE. In addition to our English Info Pak, we have InfoPaks in Simplified Chinese (简体中文)Traditional Chinese (繁體中文)French (Francais)German (Deutsch)Italian (Italiano), and Spanish (Espanol). Our Educational Forums provide a unique opportunity for patients and caregivers to hear about the latest research and treatments in WM. It’s also a great way to network with other newly diagnosed patients and “veteran” patients who have been where you are now. The US Educational Forum, which occurs annually, rotates to various regions across the U.S. Bi-annually, the IWMF sponsors the IWWM International Doctor-Patient Forum in different parts of the world, following the International Workshop for WM (for physicians and researchers) which is sponsored  by the Dana Farber Bing Center for WM.

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Did you know?

Did you know the IWMF has over 60 LIFELINE volunteers who will take your calls one-on-one to discuss their experience with a drug or an issue facing you?