Patient Stories
These stories come from people living with blood cancers and the care partners who stand beside them. By sharing their experiences, they offer connection, encouragement, and perspective to others navigating a similar path. We are grateful to everyone who has chosen to tell their story and inspire others along the way.
Linda’s story
After a distinguished and fulfilling career in education administration, Linda looked forward to a peaceful retirement in Florida. But those plans changed when her husband was diagnosed with rare blood cancer. She became his primary caregiver, facing heartbreak and uncertainty each day until his passing.
Years later, the unimaginable happened. During a routine check-up, Linda’s doctor noticed concerning signs and ordered a bone marrow biopsy. It confirmed what she feared: she had lower-risk myelodysplastic syndromes, or LR-MDS.
Linda describes being diagnosed and living with LR-MDS as a trip that you wish you didn’t have to go on. But she has a mantra that helps her face each day: find your brave. Whether it’s through the love of her family and partner Jack, her work in patient advocacy, or the simple joy of doing what she loves, Linda now finds strength in the moments that matter. And with every step forward, she continues to find her brave.
In Memory of Joan
We honor the memory of Joan, a lifelong advocate whose passion for sharing her story helped educate, support, and empower others living with MDS.
Joan had a heart for helping others. She began her career as a social worker, and that passion for supporting people never faded. After being diagnosed with LR-MDS, she brought that same spirit to the MDS community.
Joan spoke openly about the challenges of living with LR-MDS and the impact it could have on everyday life. But she was equally committed to helping others navigate their own experience. She led patient support groups, often becoming one of the first people a newly diagnosed patient spoke with, and traveled across the country to raise awareness and advocate for the MDS community.
Joan lived by a simple motto: get busy living. Sharing her story was part of how she lived that philosophy – using her own experience to uplift, educate, and empower others.
We are grateful to Joan for allowing us to share her story and honored to help carry forward the legacy of advocacy and connection she created.