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  Zvika’s journey with myeloma began sixteen years ago with monoclonal gammopathy of undetermined significance (MGUS). Over time, it progressed to smouldering myeloma, and eventually to myeloma. He’s experienced a wide variety of treatments from clinical trials to a stem cell transplant and emerged with unexpected insights about what truly matters. The internet doesn’t tell…

  When Kayleigh’s husband was diagnosed with myeloma in October 2020, everything changed overnight. The couple are from Basingstoke, UK, about an hour from London. They both worked together in a shopping centre, meaning they are on their feet all day interacting with the general public. Martin’s symptoms began as a bad back—something Kayleigh initially…

Maria is Greek-Australian and moved from Sydney to London with her adult daughter. A former research centre director, she had always lived an active, independent life.  Three years ago, at the age of 64, Maria began experiencing lower back pain. It wasn’t until she went on holiday and was forced to return home in a…

Sandra, 50, lives in Belgrade, Serbia. She’s a mother to two teenagers and worked as an interpreter until recently. “I worked long hours,” she recalls. “Sometimes ten, twelve hours on my computer. Sometimes sleepless nights.” Listening to your body: the diagnosis journey At 48, Sandra developed fatigue, headaches, and anaemia. Like many women approaching fifty,…

Last week Myeloma Patients Europe (MPE) submitted a response to the European Medicines Agency (EMA) open consultation on their “Reflection paper on patient experience data (PED)”. PED refers to data from patients that includes their perspectives, preferences and experiences with different aspects of their disease and treatments, such as quality of life and risk tolerability,…