Primary cutaneous CD30+ lymphoproliferative disorders, like lymphomatoid papulosis (LyP) and PC anaplastic large cell lymphoma (PCALCL), affect everyone differently, and each journey is uniquely personal. In this collection, people share their stories—offering honesty, hope, and connection, and reminding us that while these conditions can be complex, the human experience behind them is universal.
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.
My Cutaneous Lymphoma Journey...Thus Far
What began as a few mysterious bumps on Joe's scalp led to a diagnosis of a rare form of cutaneous T-cell lymphoma -- primary cutaneous anaplastic large cell lymphoma. Along the way, he faced multiple cancer diagnoses, radiation, chemotherapy, immunotherapy, and a bone marrow transplant. Through it all, he learned the value of self-advocacy, expert care, and staying informed. Supported by his devoted partner, he continues to navigate life with lymphoma, finding hope and gratitude despite ongoing challenges.
My LyP Story
Nikki's life was transformed in many ways since she was diagnosed with lymphomatoid papulosis (LyP) many years ago, and the changes have all been positive. These include increased self-confidence, new friendships, and fulfillment from helping others – all due to life’s unexpected twists and turns after acquiring a rare disease.