Let’s work together to tell the story of myeloma.
These are our standard notes to journalists, along with a list of spokespeople, statistics and key facts about myeloma. If you require any additional information or to arrange interviews and photos please contact Press and Content Officer Marion Sauvebois on 07949 954617 (this is also the out-of-hours number) or email firstname.lastname@example.org
About Myeloma UK
- Myeloma UK is the only organisation in the UK exclusively dedicated to myeloma and related conditions
- We receive no core Government funding and rely almost entirely on voluntary donations and fundraising
- Our ultimate goal is to find a cure and make myeloma history. Until then, our mission is to help every patient live well with myeloma for as long as possible
- We are committed to diagnosing myeloma earlier, discovering and sharing knowledge, transforming the patient experience and influencing positive change in care
- We provide a range of crucial information and support services for patients, their family and friends
- Our free Myeloma Infoline is available on 0800 980 3332, Monday-Friday 9am-5pm (closed weekends and some public holidays)
- To find out more about myeloma and the work of Myeloma UK, visit myeloma.org.uk or follow us on Twitter @MyelomaUK and Facebook, facebook.com/myelomauk
What is myeloma?
- Myeloma is an incurable blood cancer that occurs in the bone marrow and currently affects more than 24,000 people in the UK
- On average 16 people are diagnosed with myeloma every day in the UK
- Despite being the third most common type of blood cancer, myeloma is especially difficult to detect as symptoms, chief among them pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions
- While it is incurable, myeloma is treatable in the majority of cases
- Treatment aims to control the disease, relieve the complications and symptoms it causes, increase patients’ life expectancy and improve their quality of life. It generally leads to periods of remission, but patients inevitably relapse requiring further treatment
- Myeloma is the 19th most common type of cancer
- Myeloma mostly affects people aged 65 and over but it has been diagnosed in people as young as 20
10 key statistics
- Around 5,800 people are diagnosed with myeloma every year
- Eight people die from myeloma every day
- More than 3,000 people die from myeloma every year
- 74% of people diagnosed with myeloma every year are over 65
- Half of all myeloma patients will survive their disease for five years or more
- Around one third of myeloma patients will survive their disease for ten years or more
- Half of patients face a wait of over five months to receive the right diagnosis and around a third are diagnosed through an emergency route
- A third of myeloma patients visit their GP at least three times before getting a diagnosis
- Myeloma is the third most common type of blood cancer
- Myeloma makes up 2% of all new cancer cases diagnosed ever year
10 myeloma red-flag symptoms
- Persistent or unexplained pain for more than 4–6 weeks, particularly in the back or ribs
- Spontaneous fractures, including osteoporotic vertebral fractures
- Hypercalcaemia (high calcium levels in the blood)
- Reduction in kidney function
- Recurrent or persistent infections
- Unexplained anaemia
- Nosebleeds or unexplained bleeding
- Unexplained breathlessness
- Feeling generally unwell – fatigue, weight loss, suspicion of underlying cancer
- Unexplained peripheral neuropathy, that is damage to the nerves that make up the peripheral nervous system. In myeloma the nerves that are most commonly affected are those of the hands and feet
What is AL amyloidosis?
- ‘Amyloidosis’ is a general term used for a group of conditions where an abnormal protein, called amyloid, accumulates in the tissues
- AL amyloidosis is the most common type of amyloidosis. It is caused by abnormal plasma cells in the bone marrow. Amyloid can build up in the kidneys, heart, liver, spleen, nerves, or digestive system
- AL amyloidosis is a relatively rare condition, with approximately 500-600 people diagnosed in the UK each year
- It can be treated but it is a relapsing-remitting condition. This means patients have periods of remission after treatment, when the AL amyloidosis is not active or causing symptoms, but it will become active again after a period of time
- 15% of myeloma patients also have AL amyloidosis
Dr Sophie Castell, Chief Executive
Since gaining a PhD in Biochemistry and an MBA, Sophie’s career has spanned executive, interim and consulting roles across the commercial, voluntary and public sectors in both the UK and USA. She has worked with a wide range of organisations including Coca-Cola, Unilever Ventures, the Canal & River Trust, Save the Children, the NHS and the Royal National Institute of Blind People. Following her son’s autism diagnosis, Sophie joined the Board of the National Autistic Society, where she currently chairs the Brand and Commercial Development Committee. She is also a trustee of Home Start UK.
Judy Dewinter, President and myeloma patient
After being diagnosed with myeloma at just 33 years old, Judy quit her job as Global Head of European Equities at the the world’s first electronic brokerage firm and turned her skills towards helping improve the lives of patients like her across the UK. She joined Myeloma UK as Chair of the Board of Directors and, in 2019, became the charity’s first President. Judy’s national and international advocacy work has made her a well-known and highly respected patient advocate. She is a patient representative on various boards and advisory groups including the UCL Experimental Cancer Medicine (ECMC) board, the Royal Free Clinical Research Facility (CRF) management board, the UK Amyloidosis PPI Group and the Institute of Immunity & Transplantation Advisory Group. She is also Chair of the Royal Free Charity. In 2016, she was recognised in the Queen’s Birthday Honours List for charitable and voluntary services to cancer research. Throughout her long association with Myeloma UK, Judy has personally prioritised speaking to patients and their families and is a familiar and inspirational figure for many in the myeloma community
Shelagh McKinlay, Director of Research & Advocacy
After two decades spent working for the NHS and the Scottish Parliament, the communications and policy expert moved to the charity sector and now heads up Myeloma UK’s research portfolio and leads on drugs approval and patient advocacy. Shelagh not only makes sure that patients get equal access to the latest, most effective treatments, COVID vaccinations and antivirals but that their voices, needs and wants are heard loud and clear by decision-makers. She also ensures that patients play a key role in shaping and informing the future of myeloma research and clinical trials.
Dr Suzanne Renwick, Head of Clinical Practice Services
A research scientist with 20 years of experience in the biotech/pharmaceutical industry, Suzanne leads on a range of projects, from early diagnosis initiatives and the creation of education materials for healthcare professionals to the Clinical Service Excellence Programme (CSEP). Suzanne has a personal connection to myeloma as her mother-in-law lived with the disease. As such she has a deep understanding of the impact of myeloma, both on patients and their families.
Alice Baron, Head of Patient and Carer Information and Support
An expert at translating complex scientific data into patient-friendly guides and handy materials, Alice’s goal is to empower the myeloma community through clear, accessible and reliable information. She is the editor of Myeloma UK’s two patient magazines, Myeloma Matters and AL amy Matters, as well as the author of a range of British Medical Association Patient Information Award-winning publications, including the very first easy-read guides for myeloma patients. Keen to support patients’ mental health and make sure Myeloma UK’s services have real impact, she recently launched an interactive emotional wellbeing tool.
Myeloma patients, even those in remission, are considered extremely vulnerable to COVID-19. This is because myeloma and its treatments affect the immune system resulting in a higher risk of severe illness due to COVID-19 and a lower likelihood of producing a sufficient response to COVID-19 vaccines.
Head to our COVID-19 Vaccines FAQs page for more information about vaccinations, boosters and COVID-19 treatments.
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