Share Your MDS Story

James Williams

MDS Survivor, MDS Foundation Board of Directors, Development Advisory Board & Finance Committee Member

My journey with myelodysplastic syndromes (MDS) began in early 2017 with unexplained shortness of breath. A year later, I was bruising easily and my symptoms intensified. Over Memorial Day weekend in 2018, everything came crashing down — I collapsed walking up a flight of stairs.

Tests revealed dangerously abnormal blood counts, but no answers. It was not until Mayo Clinic stepped in that I finally received my MDS diagnosis. What followed were months of chemotherapy, transfusions, hospital stays and an overwhelming fear about the future.

Finally, on November 1, 2018, I was admitted for a stem cell transplant. My donor was my oldest son. I spent 35 days in the hospital, lost more than forty pounds, and was often too weak to sit up in bed. Once discharged, I experienced several setbacks, including a blood clot that required more than 10 hours of surgery, a brain bleed and pneumonia. Through it all, my wife and our children were my source of strength, and the nurses who cared for me were absolute angels whom I will never forget.

By 2020, I finally began to regain some normalcy. My follow-up appointments went from monthly, to quarterly, to twice a year. This November marks seven years since my transplant — and I remain cancer free.

Throughout my journey, the greatest challenge was not just the physical battle, but the lack of information and understanding surrounding MDS. Even my primary care physician had not recognized the signs. My wife and I felt powerless. That is when the MDS Foundation became our lifeline. The Foundation’s guides, message boards, and educational tools gave us the knowledge we needed to fight with confidence.

Today, I serve on the Foundation’s Board of Directors, Development Advisory Board, and Finance Committee, because I believe in paying it forward. My advice to others facing MDS is this:

• Show up every day. Do what is asked of you, and keep moving forward, even in the smallest ways.

• Stay positive. A positive attitude does not mean being happy all the time — it means believing there are better days ahead.

• Lean on caregivers when you need to, but do not let dependence weaken your inner strength. And caregivers, remember to care for yourselves. You cannot pour from an empty cup.

• Be your own beacon. Treatments evolve, science advances, but your determination will be the greatest factor in your survival.

Finally, we are far stronger than we know until we need to be stronger than we have ever been. This strength is not handed to us. It is discovered deep within, often in silence, often alone. And by sharing our stories, we offer others not just hope, but the courage to find their own.