Community & Educational Resources

Stories of Help and Hope

Stories of Help and Hope

Story of Hope - Michele
September 2024 - Michele shares her story of being diagnosed with mycosis fungoides as a young adult, finding a specialist and a treatment plan that works for her. She also highlights the value of finding a community of other individuals living with the disease for support and insight in living with the disease.
Stories of Help and Hope

Story of Hope - Cathy
May 2024 - Cathy's experience is unique as she is a nurse who, while training to be a physician assistant in dermatology, recognized her own cutaneous lymphoma diagnosis. Her journey through treatments and pregnancy have made her passionate about helping the patient community she serves.
Stories of Help and Hope

Story of Hope - Jeff & Trish
April 2024 - As part of our 2-Day Patient Conference, Jeff and Trish shared their story of Jeff's diagnosis with mycosis fungoides and his eventual need for a stem cell transplant. Jeff's wife, Trish, shares her perspective as an active participant in his journey offering both "tough love" and support.
Stories of Help and Hope

Story of Hope - Martin
September 2023 - As part of our International Patient Conference, Martin S. shares his personal journey after receiving a Sezary 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.
Stories of Help and Hope

Facebook Live: Story of Hope - Cynthia
February 2022 - Our guest, Cynthia G., joins Susan Thornton to share her story of supporting her adult son when he was diagnosed with cutaneous lymphoma. Learn how Cynthia assisted him to navigate through the often confusing healthcare system. She also offers some advice, based on her experience, on how to respect boundaries, when to let go and when to help. If you are a parent of an adult who has been diagnosed with the disease, Cynthia's story can offer you both help and hope. 
Stories of Help and Hope

Facebook Live: Story of Hope - Keturah
December 2021 - Living with cutaneous lymphoma can be challenging. Keturah H. shares the challenges she faced when diagnosed and how she lives her life with HOPE and inspires others to do the same.
Stories of Help and Hope

MY PERSONAL JOURNEY WITH CUTANEOUS LYMPHOMA: Susan Thornton
Susan Thornton shares her story of being diagnosed with cutaneous lymphoma, its impact on her life and how it led to her current position with the Cutaneous Lymphoma Foundation.
Stories of Help and Hope

MY PERSONAL JOURNEY WITH CUTANEOUS LYMPHOMA: ASHLEY MEDICK
Ashley Medicks was diagnosed with cutaneous lymphoma in his late teens. Now in mid-sixties, he shares what he has learned about living with cutaneous lymphoma and how it has influenced his approach to life.*

Mr. Ashley Medicks
Founder/Director
Skinship - UK General Dermatology Helpline

*The opinions expressed in this video are those of the guest speaker and do not necessarily reflect those of the Cutaneous Lymphoma Foundation. Important to note, because each person's body and response to treatment is unique, individuals should work in collaboration with their physician(s) to determine their approach, including what treatment options may be best.
Stories of Help and Hope

Facebook Live: Caregiver Story
August 2021 - Our guest speaker, Meredith H., cared for her mother after she was diagnosed with late stage mycosis fungoides. Meredith shares the challenges she faced and rewards she experienced as a caregiver.
Stories of Help and Hope

Our Journey with Cutaneous Lymphoma: Becoming Empowered
Navigating the path to good care can be challenging when you have a rare disease. Caregiver Lisa K. shares her and her husband's experience when he was diagnosed with Sézary syndrome.
Stories of Help and Hope

My personal journey with cutaneous lymphoma: Neil Dicker
Neil Dicker retired dentist who is an avid cyclist discusses his leading-edge treatments and life in remission.  He was diagnosed in 2005 with Stage 3 of Sezary syndrome, a form of cutaneous T-cell lymphoma (CTCL). Read Neil's story and watch his video.
Stories of Help and Hope

My Journey with Cutaneous Lymphoma: Joe Carey
Joe Carey shares his experience of taking control of his life and care when living with cutaneous lymphoma.
Stories of Help and Hope

My Journey with Cutaneous Lymphoma: Susan Slaviero
Susan Slaverio shares her experience being diagnosed with Sézary syndrome and undergoing a bone marrow transplant/stem cell transplant.
Stories of Help and Hope

MY PERSONAL JOURNEY WITH CUTANEOUS LYMPHOMA: Danna Wessels & Nancy Noble
Danna Wessels and her spouse, Nancy Noble, share their personal story of Danna’s stem-cell transplantation. Their experience provides an honest portrayal of the challenges faced by both patient and caregiver.