Navigating the journey of ECP therapy can be overwhelming, but having access to clear, reliable information makes all the difference. Patient resources play a crucial role in helping individuals and their caregivers understand treatment options, manage daily challenges, and feel more confident in their care journey.
Below is a collection of trusted resources focused on ECP treatment, designed specifically for patients and caregivers. These materials provide practical guidance and essential information to support you every step of the way.
Know GvHD
Patient Story
In this video, Steven Jackson (US) shares his experience with complications from GvHD treatment. He discusses side effects from extracorporeal photophoresis (ECP), including dry eyes, skin dyspigmentation, and painful mouth sores. Steven explains how scleral contact lenses have helped relieve his dry eye symptoms and mentions that while his mouth sores remain challenging, his other symptoms are now stable.
Know GvHD
Patient Story
Matea was first diagnosed with acute lymphoblastic leukemia at age 10, she overcame childhood cancer – only to face a relapse in 2019. A stem cell transplant brought hope but also severe GvHD, affecting her skin and liver. Through multiple treatments, including ECP, Matea fought through immense challenges. Now, she shares her story to educate, inspire, and support others facing similar battles.
Therakos
Patient Stories
This is a story about patients, made by a patient, for patients. Wilfred Emmanuel-Jones, supported through an unrestricted educational grant, has independently produced this documentary which tells the story of the emotional, physical and mental battle through leukaemia, stem cell transplantation and GvHD. This is a story about hope.
Anthony Nolan
Meet the Expert: Dr Fiona Dignan
Dr Fiona Dignan discuses managing Chronic GVHD after a stem cell transplant, including the use of extracorporeal photopheresis.
Anthony Nolan
Patient perspective blog
What’s it like having extracorporeal photopheresis (ECP) for graft versus host disease? ECP patient Sam gives a world perspective of what it’s like to have ECP treatment, the impact of ECP on daily life, and advice from the patient’s side.
Rotherham Patient Resources
Children’s ECP: Anastaia’s Story
A patient’s experience of ECP from a paediatric perspective. Anastaia gives an account of the day of treatment, the day of arrival, during ECP and future visits.
The Beatson Cancer Centre
Patient information on ECP
Patient information from the Beatson West of Scotland Cancer Centre, and for Haematology inpatients at the Queen Elizabeth University Hospital and the Royal Hospital for Children. Information on what is photopheresis, what conditions is it used to treat, how it’s performed, side effects and how many procedures may be required.
Therakos
What is ECP?
Information on what ECP is, and who ECP is for, including cutaneous T-cell lymphoma (CTCL), organ transplant rejection, graft versus host disease (GvHD) and autoimmune diseases such as systemic sclerosis.
Therakos
How does ECP work?
Information on how ECP works, including a video explaining the Therakos CellEx photopheresis system.
Therakos
What do I need to know before starting ECP?
Slide show and information video on what happens during ECP, how you can prepare for ECP and what are the side effects of ECP, including downloadable patient brochure.
Therakos
Patient stories
Video accounts of patient stories, including Chris who received ECP for his GvHD, and Wilfred who documents the story of his emotional, physical and mental battle through leukaemia, stem cell transplantation and GvHD.
Advancing health by stimulating research and disseminating knowledge of photopheresis 