I was introduced to MDS in 2014 when my mother, who was in her late 70s, was diagnosed after having other health issues. I served as my mother’s caregiver. When she was diagnosed we knew nothing about MDS and had never known anyone who had the disease. My mother’s MDS journey kept us close and I feel blessed to have been able to have been by her side throughout it. Thanks to my mother’s doctors, we were given the information, education, and tools we needed to care for my mother. She had weekly infusions and blood transfusions. By being there for my mother every step of the way, we were able to remain close until her death in December 2017. Before this happened though, in 2016, I was shocked to find out that my journey with MDS was not even close to over.
I was admitted to the hospital for initially unknown reasons, eventually getting diagnosed with pleurisy. Then came a slew of additional tests, which lead to my own MDS diagnosis. You could say I was very surprised to say the least. My oncologist, Dr. Phillip Wade, referred me to Mass General Hospital in Boston and my diagnosis was confirmed, I definitely had MDS. I couldn’t believe I had been diagnosed for many reasons, but age was definitely one of them, as it is not common to be diagnosed in your 50’s.
I began a routine of getting bloodwork done regular to make sure there was no changes and my symptoms remained mild and manageable for a while. So, I kept the diagnosis mostly to myself. I only told my husband, daughters, a few family members, and one close friend. Recently though as my symptoms began to change, so did my treatment. Now I am on Procrit and get blood work done every week.
This change in my health happened to come near the time of the MDS Foundation’s 2020 Boston & Global MDS Awareness Walk. My amazing daughters inspired me to open up to more friends and family about my diagnosis. This led to not only myself, but also my wonderful and supportive friends and family to sign up for the run/walk! On race day, a beautiful sunny Sunday in October, I had over 30 family and friends to do the race with me in our home, Cape Cod.
This run/walk allowed me to open up and be honest about my diagnosis which allowed me to raise awareness for MDS. I walked in honor of my mother and all those who have been impacted by MDS. That day, during the run/walk, we really did make a scene and raised awareness and funds to go towards the MDS Foundation’s mission of finding a cure and improving treatments and patient care. It was wonderful and fulfilling to get to make a difference with so many people whose love and support means the world to me.
Despite a recent diagnosis of hemochromatosis, days like the run/walk remind me of how lucky I am to be surrounded by such a great support system. Not to mention my doctors and the entire medical teams who are also there every step of the way. Opening up was scary but the love and kindness I receive has been amazing. Doing the race together has made us stronger and we all look forward to doing the race next year!
