MAW2025 made myeloma visible: Signs seen, voices heard
In life, when there’s a warning sign for a wet floor or a stop sign, people take notice.
This year, we built Myeloma Awareness Week (16-22 June) on this idea. We created real-life warning signs for myeloma symptoms. Our supporters Carly, Mart, Mel and Louise, all of whom have myeloma, had these warning signs painted on their bodies in the places where some of the most common symptoms appear.
We know the non-specific, wide-ranging nature of symptoms means that myeloma presents differently in every person, making it hard to spot. This means a third of people visit a healthcare professional at their GP surgery about their signs and symptoms at least three times before getting a diagnosis.
This campaign was designed to stop people in their tracks. To raise awareness of the symptoms and signs, to Think myeloma!.
We combined this with our Myeloma Symptom Translator, designed to make diagnosis easier by connecting patients’ own descriptions of their symptoms with the medical term for each.
Myeloma was seen
The campaign saw people in our community take action to raise awareness, and together we reached people who had never heard of myeloma or Myeloma UK before.
To help more people ask the right questions about their symptoms and get a diagnosis sooner, we need to reach those who have never heard of myeloma before. Through social media adverts we reached over 1.6 million people, with more than 24,000 of these going on to explore more about myeloma symptoms on our website. Our press coverage spanned features across 10 national newspapers, with one featuring Professor Graham Jackson, plus online coverage with the BBC and STV.
The campaign even reached parliament, with a motion in Scottish Parliament and an Early Day Motion at Westminster, making sure myeloma was on the political agenda.
And we didn’t stop there. Myeloma UK supporters showed their commitment to ensuring more people know the warning signs, and supporting GPs in thinking and spotting myeloma. They downloaded our Myeloma Symptom Translator and took it to their GP surgery. 633 supporters across the UK downloaded the tool, helping to bridge the gap between vague and varied symptoms, and a route to diagnosis.
We know that this number includes many of you, healthcare professionals committed to supporting colleagues in primary care spot myeloma sooner – thank you!
Myeloma Awareness Week is over but we know we still need to go further, faster, because early diagnosis is key. Louise is one of the incredible people living with myeloma who took part in the campaign. This is her story and her thoughts about why myeloma awareness is so important, every day.
Recognising the warning signs: menopause or myeloma?
An Uddingston mum who was eventually diagnosed with incurable blood cancer experienced a broken rib and severe kidney damage after her symptoms were initially thought to be related to menopause.
Louise Greenbank from South Lanarkshire, described the pain as feeling like someone was “knocking on her bones from the inside”. She had been experiencing night sweats, intense rib pain and debilitating fatigue but her symptoms were first attributed to costochondritis, and later to menopause.
The mother-of-three, was diagnosed with myeloma in August 2021, six months after her symptoms began. During that time she had visited her GP three times and attended A&E once.
By the time her cancer was identified, just two days after her 46th birthday, she was in kidney failure, had a broken rib and developed lesions, in her hip, pelvis and lower back.
Her children Pearce, Farrah and Morrin were just seven, nine and 13.
To help raise awareness of the early signs of myeloma before it’s too late, Louise fronted Myeloma UK’s Know the Warning Signs campaign during Myeloma Awareness Week (16-22 June).
As part of this powerful initiative, Louise was featured with a yellow warning sign painted directly onto her body to highlight the symptoms and encourage others to speak to their GP if something doesn’t feel right.
“I would fall asleep when I came home from lunch but I put it down to my age and to my workload,” said the 49-year-old. “Then I started to have bad night sweats, I was so drenched. Breathing became agony, the bone pain was really bad, it was like somebody was knocking on my bones from the inside. I had been to A&E and they had done tests but they had sent me home.
“Unbeknown to me at the time I had a broken rib. I had all the symptoms you read about, but of course I’d never heard of myeloma. I never thought it could be cancer.”
She added: “I can see why it’s missed because it’s tiny little things that could be a multitude of things that are wrong with you. But myeloma can strike at any age, any level of fitness or mobility. So trust your gut and keep pushing for answers. For me it’s about raising awareness. My mum said to me, ‘If you can help one person, you’ve done your job’.”
Despite being the third most common type of blood cancer, myeloma is still frequently missed. We know from speaking to people with myeloma that often, the signs of myeloma were there for a long time before diagnosis. Sometimes, people dismiss their own symptoms as part of general ageing or minor conditions.
We also know that people may have visited their GP several times with different symptoms before receiving that diagnosis. The non-specific, wide-ranging nature of symptoms means that myeloma presents differently in every person, making it hard to spot.
Because describing vague symptoms can be tricky, we have paired this year’s Myeloma Awareness Week campaign with our symptom translator.
Designed with the help of people living with myeloma and GPs, the handy guide lists examples of symptoms in patients’ own words alongside the corresponding medical term for each.
We want to raise awareness of the signs of myeloma everywhere – and that means we need healthcare professionals to Think Myeloma! By sharing the symptom translator with your colleagues, especially those in primary care, we can work together to diagnose myeloma earlier. If more people recognise the warning signs, we can change that. Together, we are the cure.
You can download the symptom translator here: myeloma.org.uk/signs.
