Cutaneous lymphoma can appear in many different ways, and each person’s path is uniquely their own. In this collection, people share their stories about living with Sézary syndrome (SS). Their stories offer honesty, hope, and connection--reminding us that even though the condition can be complex, the human side of it is something we can all understand.
Just a reminder that personal experiences are unique and don’t always reflect the Foundation’s viewpoint. And while we hope these stories encourage you, they are not meant to replace medical advice—please follow the guidance of your healthcare professional.
Living with Sézary Syndrome
Mahanth traces his long journey from an initial misdiagnosis to finally being diagnosed with Sézary syndrome. He shares the challenges of treatment, the importance of steady support, and the practical decisions he made along the way. It concludes with a successful stem cell transplant from an anonymous donor that has led to remission and a renewed sense of connection and resilience.
Story of Hope
As part of our International Patient Conference, Martin shares his personal journey after receiving a Sézary syndrome diagnosis shortly after being diagnosed with and treated for bowel cancer. Martin shares how treatment made a difference for him in unexpected and positive ways.
Our Journey with Cutaneous Lymphoma: Becoming Empowered
Mike was just 41 when he was diagnosed with Sézary syndrome, a rare and aggressive skin lymphoma. As he and his wife navigated confusing treatments, insurance hurdles, and rapid medical changes, they learned how overwhelming the system can be—especially for patients who don't naturally speak up. Their experience underscores the importance of asking questions, tracking details, and advocating for yourself or a loved one when facing a rare disease.
My Journey With Cutaneous Lymphoma
Susan's journey with cutaneous T‑cell lymphoma began in 2009 with a mysterious rash and relentless itching that led to a diagnosis of Sézary syndrome, a rare and aggressive CTCL. After exhausting treatments and ultimately receiving a life‑saving stem cell transplant, she continues to navigate the ongoing challenges of survivorship. By sharing her story, she hopes to help others recognize early signs and appreciate the importance of support and resilience.
Conversation With a Patient: I Want to Help Other People
When retired dentist and avid cyclist Dr. Neil D. was diagnosed with Stage 3 Sézary syndrome, a rare form of cutaneous T‑cell lymphoma, he faced a daunting prognosis and years of grueling treatment. Yet his path ultimately led to remission, renewed strength, and an inspiring mission to help others understand emerging options like stem cell transplantation. His remarkable journey—from crisis to recovery to advocacy—offers hope to anyone navigating CTCL or other cancers.