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 folliculotropic mycosis fungoides (MF). 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.
A Mother’s Perspective: Supporting an Adult Child with Cutaneous Lymphoma
Cynthia is the mother of an adult son living with cutaneous lymphoma. She shares her unique perspective on supporting a loved one through a rare diagnosis—balancing advocacy, independence, and emotional resilience. Her journey offers practical wisdom, honesty, and hope for anyone navigating this disease alongside someone they love.
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.
It's Not a Sprint, But a Marathon
After David’s CTCL diagnosis in 2012, he and his wife Charmagne began a long, challenging journey—one that felt far more like a marathon than a sprint. From early creams and light therapy to systemic treatments, photopheresis, and ultimately full‑body low‑dose radiation, they learned to adapt, research, and advocate for his care. Through setbacks, fear, and unexpected progress, they discovered resilience, moments of joy, and a renewed commitment to living fully as they navigated a life forever changed.
The Phone Call No One Wants
When Brett was diagnosed with mycosis fungoides in 2014, Emily’s world shifted instantly from normalcy to fear and uncertainty. As they learned more and his treatments began helping, the couple found stability. Their story highlights resilience, partnership, and the commitment to live fully together despite the challenges of a chronic, unpredictable disease.
A Daughter's Story of Care
When Gabrielle was finally diagnosed with advanced CTCL after years of misidentification, her family was thrust into a journey they never expected. Through fear, treatment setbacks, moments of grace, and the profound bond of caregiving, her daughter discovered the need for practical, everyday skin‑care guidance for CTCL—ultimately inspiring resources that now support care partners everywhere. This story honors a mother’s strength, a daughter’s devotion, and the hope that emerges when love turns adversity into purpose.
Accepting the Unexpected: One Couples Journey with CTCL
Marie shares her story of supporting her husband as a small red patch on his leg led to a diagnosis of cutaneous T‑cell lymphoma (CTCL). After years of misdiagnoses and failed treatments, the reality of a chronic cancer changed their lives. Yet through support groups, shared experiences, and family’s love, they found strength. Staying connected and choosing positivity helped them move forward together.