Myeloma is the second most common form of blood cancer in the UK, affecting around 17,500 people.
Blood cancer charity Myeloma UK has pledged to make more people than ever before aware of the condition as it launched a new campaign.
Shout About Myeloma aims to inform people about the disease and tell the stories of those who live with it.
Myeloma, which arises from plasma cells made in the bone marrow that form part of the immune system, is the second most common form of blood cancer in the UK.
Currently around 17,500 people live with the condition, which is more common in people of African descent (13 in every 100,000 against five in 100,000 for white people). Black people are also more likely to be younger at diagnosis than white people. (66 years versus 70 years respectively).
Unlike many cancers, myeloma does not exist as a lump or tumour, and some of the symptoms, such as back pain and tiredness, are non-specific and associated with changes common as people get older, making it harder to diagnose quickly.
Myeloma patients experience some of the longest delays to diagnosis of all cancer patients, with a third of patients being diagnosed as a result of emergency admission.
The disease is currently incurable.
Marc Gordon, Myeloma UK chairman, said: “Living with a diagnosis of myeloma places a huge physical and emotional strain on the people it affects.
“We are aware that research has identified that myeloma is 2-3 times more common in people of African descent and we are committed to raising more awareness on this issue. The impact of this devastating disease is huge, and the deeply personal stories our campaign highlights describe only part of the picture.
“As well as our ground breaking research work to help find a cure for myeloma, and efforts in improving earlier diagnosis, Myeloma UK provides patient support, advice and assistance services free of charge to everyone who needs them. We receive no government funding and can do this only thanks to the generosity of our supporters.”
Carmen Lester, from Surrey, is helping launch the campaign. She said: “I was diagnosed with myeloma aged 54, which came as a shock to me.
“I‘ve always been pretty healthy, eating well and going to the gym but I’d had pain and fatigue for a year. When I was visited my doctor I found out that 95% of my marrow was populated with myeloma so I was then put on three months of aggressive chemo. Thanks to the proper treatment, soon my results were much better, but my life has changed and so have many others.
“Myeloma UK have given me support. There are 5700 new cases of myeloma in the UK every year. They receive no Government funding and every penny raised directly helps towards finding new treatments so people like me can enjoy a better quality of life whilst they work to find a cure.
“There’s no more time for silence, it’s time to shout about myeloma.”
