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 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.
From Uncertainty to Understanding
Michelle’s mycosis fungoides journey began unknowingly in her early twenties, when a persistent “eczema-like” rash went undiagnosed for decades. After a COVID infection triggered rapid changes, she finally received a CTCL diagnosis and began effective treatment with narrowband UVB and topical therapies. Through self‑advocacy, education, and support from the CTCL community, Michelle has gained clarity, confidence, and control in managing this lifelong condition—approaching each step with positivity and vigilance.
A Story of Strength, Support, and Second Chances
Jeff and Trish share a remarkable journey through Jeff’s long, difficult path to a CTCL diagnosis, years of complex treatments, and ultimately a life‑saving stem cell transplant. Supported by skilled clinicians, unwavering family, and an unexpected donor match, their story highlights persistence, partnership, and the profound impact of hope and community in facing a rare disease.
Living With CTCL: One Woman's Path to Hope
Katura is a long‑time cutaneous lymphoma patient whose resilience and warmth have inspired many in the CTCL community. After years of misdiagnosis and escalating symptoms, her journey with mycosis fungoides became a profound test of strength—physically, emotionally, and spiritually. Through compassion, humor, and a deep commitment to encouraging others, she has transformed her experience into a source of hope, reminding patients and caregivers alike of the power of connection, holistic healing, and community support.
My Personal Journey with Cutaneous Lymphoma: Susan Thornton
Susan Thornton shares her personal journey with cutaneous lymphoma. She recounts her diagnosis in 1991, the challenging treatments she underwent, and how her experience led her to her leadership role with the Cutaneous Lymphoma Foundation, where she now supports others living with the disease.
Fifty Years Forward: Ashley’s Journey
Ashley, diagnosed with cutaneous lymphoma at 17, reflects on more than 50 years of living with the disease. He shares how it shaped his bold approach to life—from business risks to adventures across Africa—and his commitment to supporting others through Skinship, the UK’s only general dermatology helpline. He also recounts creating a BBC documentary to challenge stigma and stresses the lasting importance of patient empowerment, shared experiences, and strong patient–clinician partnerships.
Fighting Forward: Joe’s Journey Through CTCL
Joe’s CTCL journey began in 1993 with mysterious skin patches that went undiagnosed for years. As his disease progressed from mycosis fungoides to Sézary syndrome, he faced escalating symptoms, intense treatments, and profound uncertainty. Taking control of his care became the turning point—leading him to CTCL specialists, a life‑changing clinical trial, and ultimately a successful stem cell transplant. Today, Joe is living fully again, offering his story as a testament to perseverance, self‑advocacy, and hope in the face of a long and difficult road.
Stronger as Two: A Patient‑Care Partner Journey
Danna and Nancy share their experience with Danna's stem-cell transplant, offering an honest look at the challenges faced by both patient and caregiver. They discuss the emotional and physical toll of the illness and the importance of support and setting goals for a positive mindset
Finding Answers, Finding Community
Laurel reflects on her 30‑year journey with mycosis fungoides, diagnosed in her mid‑20s when little was known about the disease. With limited options, she relied on light therapy for decades and navigated the emotional challenges of living with a misunderstood cancer. Laurel highlights how dramatically treatments and patient resources have evolved and encourages newly diagnosed individuals to find hope, connect with others, and know that today there are many effective options and specialists available.
Choosing Hope: Donna’s CTCL Journey
Donna, originally from Jamaica and now living in New Jersey, was diagnosed with mycosis fungoides in 2001 and progressed from topical treatments to systemic therapy before reaching remission. She encourages newly diagnosed patients to seek specialists, trust their care team, and rely on credible resources rather than online images—reminding others that far more support and information are available today than when she began her journey.
My Personal Journey with Cutaneous Lymphoma
Janet’s cutaneous lymphoma journey began with fear and isolation, made worse by a lack of clear information. Everything shifted when she connected with the Cutaneous Lymphoma Foundation, where a single conversation provided grounding and hope. Through the foundation’s education and conferences, she gained understanding, confidence, and—most importantly—a community of people who shared her experience. Connecting with other patients replaced her fear with empowerment and reminded her she was never alone.
From Fear to Empowerment
Brett, a physical therapist, shares his journey with mycosis fungoides—from the shock and fear of diagnosis to beginning phototherapy with little information or guidance. With time, reassurance from his care team and the invaluable support of the Cutaneous Lymphoma Foundation helped him and his wife navigate the emotional toll. Today, Brett feels empowered, informed, and able to live his life fully again, supported by a strong community and renewed peace of mind.
JC’s Journey of Resilience
JC reflects on his 16‑year journey with a long‑misdiagnosed case of cutaneous lymphoma, confronting isolation, discouraging prognoses, and treatment limitations—especially as an African American patient. Through each challenge, he demonstrated remarkable resilience, making determined, informed choices that allowed him to continue working and living fully. JC remains hopeful and proactive, committed to understanding and managing his illness with strength and clarity.
Gary's Story of Hope
Gary Robinson shares his inspiring journey with cutaneous lymphoma (CTCL), a diagnosis that finally came in 2009 after seven years of uncertainty and repeated misdiagnoses. Thanks to a persistent physician who saw beyond the surface, Gary was quickly connected with a specialist who identified Mycosis Fungoides Stage 1B and set him on a path toward effective treatment. Through consistent UVB light therapy—and unwavering determination—Gary overcame a brief recurrence and has remained in remission since 2012. His story is a testament to perseverance, self-advocacy, and hope.
Not Defined by Diagnosis
Joe reflects on his journey with cutaneous T‑cell lymphoma (CTCL), first diagnosed as mycosis fungoides in 2003. Facing his own cancer while coping with both parents’ serious illnesses, he chose not to let fear—or his diagnosis—define him. Joe continues to live the same healthy, active life he did decades ago, drawing strength from his work as a disability rights lawyer. Inspired by clients who refuse to be limited by their challenges, he applies that same philosophy to his own life with resilience and purpose.
From Patch to Purpose
Brittany was diagnosed with mycosis fungoides as a teenager, turning a sudden skin patch into a years-long journey of biopsies, demanding light therapies, and emotional challenges throughout high school and college. Despite setbacks, exhausting treatments, and moments of doubt, she found strength through faith, support from loved ones, and a determined commitment to keep going.
My Journey With Mycosis Fungoides
Christopher (Chris) recounts his journey with mycosis fungoides, beginning with a misdiagnosed facial rash and the shock of finally learning he had lymphoma. With little initial guidance, he turned to the internet, where grim information added to his fear. His path included searching for knowledgeable specialists and undergoing aggressive treatments while battling severe side effects like weight loss and extreme fatigue. Though the experience was isolating and overwhelming, his story reflects perseverance and the strength he found as he learned more about his condition and his own resilience.