International Waldenstrom’s Macroglobulinemia Foundation
Sharing your story with us is a fantastic way for you to help others who are traveling down the same path that you are — whether you are a patient, caregiver, or family member— we would love to hear from you.
Patients and others who visit our website often tell us that one of their favorite features of our communications are the stories of the lives of people who are affected by WM. We would very much enjoy learning about you, your story, and how your experiences can motivate, help and inspire others we serve.
We invite you to read, enjoy, and learn from the following first-person stories by patients and caregivers, worldwide, affected by WM.
If you are interested in sharing your story with us so that we may share it with others on our website, please submit your contact details.
From Canada - Ron Ternoway: The Trials Continue! It's been more than 14 years since my Waldenstrom diagnosis, and I've spent half of that time on clinical trials. Over the last year, I have been enrolled in a U.S.-based clinical trial of...
Where Hope Is Found by Julie Richardson, diagnosed with WM at age 44 www.someonestolemycoffee.com March 13, 2020. A Friday the 13th I will never forget. On the one hand, it would turn out to be my then twelve year-old daughter’s last day of...
Marcia Klepac: Risk Taking in the World of WM What a disappointment! In early January 2001, I nervously opened the envelope with my lab results and found that my six years of MGUS (or possibly smoldering Waldenstrom’s) had most likely progressed...
Davell Hays: Not an Ending but a Great New Beginning In the 6 years since the story of my journey was published, a lot has happened. I have been on Ibrutinib since then, with a nearly normal IGM. I am fairly healthy for a 73 year old. The winery...
Dr. Barbara Sunderland Manousso: Confessions of a Caregiver/Spouse/Ombuds Years ago, I heard that those afraid of dying are those who have not lived. I have kept this in the front of my mind as signage, since husband John Manousso, now almost 83...
From Canada - Stu Boland: What More Could I Hope For? Editor’s Note: In earlier posts on this website, Stu Boland shared his experiences as a new WM patient, beginning in 2002 and updating in 2015, featuring his various treatments and describing...
The summer of 2003 was promising. My husband and I had moved back to our home near the beach in southern Delaware, and I was back at a job I loved – selling radio advertising to local businesses in our small town. Best of all, my health was good. I...
Why is it that some little things, hardly noticed at the time, become life-changing events? My wife and I were enjoying some vacation time at my wife’s “happy place” – a small condo on one of the barrier islands near Charleston, SC. It was Labor...
Please listen to a special message from Sharon to her fellow WMers on her YouTube channel, https://youtu.be/qw2GkpUJtRY(link is external) For most of my life, I have practiced a healthy lifestyle. While in my 40’s, I began to exercise. Eventually,...
[This is an update on Ed Kemp, a member of the IWMF community, whose original Story of Hope was published in 2015] Since 2015, my lifestyle and health have continued to both change and improve. In order to describe what has happened during the last...
[*The author, Kathy Horton, was featured in a recent article in Cure Today (Read Story HERE(link is external)), focused on how WM and other cancer survivors deal with the additional uncertainty of COVID-19. This story is a coda to the Cure...
After undergoing eighteen months of chemotherapy ending in 2014, which resulted in much success and years of being well managed and free of infusions, my WM flared up again, significantly, in 2019. This required me to go back into treatment. After...
My entire life has involved heavy engagement in various forms of long-distance running, cross-country skiing, and canoeing, but myelodysplastic syndrome (MDS) has reduced my HGB levels to the point where my usual vigorous training regimens are no...
Please listen to Tim's song here . My Waldenstrom’s (WM) story officially began in January of 2018, two days after my 70th birthday. Happy Birthday Tim! Unofficially, I believe it began many years – or possibly, even many decades – before that. I...
From Canada- A Story of Hope: Michael Knowlton From Michael Knowlton: Kindness is a beautiful thing, both as the recipient, and as the giver. Living with cancer (WM) in my life has reminded me of the importance of being a force for good and working...
Diagnosed with WM in 1990, Lisa Wise has been mindfully practicing social distancing long before it was popular worldwide. After almost seven years of watch and wait, Lisa was treated with Bendamustine and Rituxan to address complications...
In the summer of 2014, I became slightly short of breath during a hike up a granite dome mountain called “The Thumb” at Sequoia National Park. This was highly unusual for me. I have been a high-energy person my entire life, working in the...
Published in the IWMF Torch , November 2014, pages 15-18 *Updated January 2020* Jennifer Hoegerman’s life is, by every measure, an active one filled with parental and professional commitments, volunteerism of a challenging sort, an enthusiasm for...
I will never forget the phone call that changed our lives. It was in the autumn of 1998 when my sister and I received a call from my mother. She was extremely upset. Our father had just received a call from his doctor who reported his lab work...
This is an update to ROGER’S STORY published on www.iwmf.com ON DECEMBER 11, 2014 Multiple cycles of chemo and relapse, followed by an autologous stem cell transplant. The photo shows the last of my hair coming off during transplant! ...