New SRUK research reveals millions of UK adults are 'woefully unaware' of Raynaud's

More than 24 million people in the UK – nearly one in two adults – cannot name any of the symptoms of Raynaud’s, an incurable and painful condition that affects as many people as hay fever, according to new figures released today.

SRUK commissioned the research, which highlights a ‘shocking’ lack of awareness across the UK with millions more likely to dismiss symptoms and avoid their GP.

Raynaud’s is a chronic condition that affects around 10 million people in the UK – around one-in-six – and has no cure. Cold temperatures and stress can trigger ‘attacks’, which cause blood vessels to constrict and temporarily stop blood flow, most commonly to the hands and feet. During an attack, the skin may turn white and then to blue, and become numb. As the blood begins to return, affected areas turn red and become painful.

For around 300,000 people it could also be a sign of an underlying autoimmune condition, including scleroderma that could potentially be life-threatening; thus early detection is vital to manage Raynaud’s symptoms effectively, minimise attacks and diagnose any associated health issues.

Common signs of Raynaud’s are extremely cold hands and feet, chilblain-like inflammation and colour changes to the skin. However, SRUK has found that many people do not think these would warrant a GP visit. According to the new figures, nearly one-in-two adults (46 percent) would not see their doctor if they experienced cold hands and feet regularly, and more than 28 million (52 percent) would not book a GP appointment for chilblains on their hands and feet. Likewise, frequent colour changes in the skin would not spur 23.8 million UK adults (44 percent) on to discuss it with their GP.

Sue Farrington, SRUK Chief Executive, said: “Raynaud’s is as common as hay fever or arthritis and can have just as big an impact on daily life if not more so, but these figures highlight just how woefully unaware most of us are.

“Raynaud’s itself is not life-threatening, but it can be very painful and have a huge impact on everyday life – during an attack, simple things like buttoning a coat, turning a key in a front door or handling bank cards can become virtually impossible. Around three million people with the condition have to live with this all year round and attacks can be difficult to manage, particularly without any expert health advice. It may also be a sign of something more serious, so it’s not something to be swept under the carpet and ignored - it’s vital people know the signs and visit their GP.”

Despite women accounting for 80 percent of cases, half of those surveyed said they would not visit their GP if they experienced extremely cold fingers and toes more than once. And more than one-in-three (36 percent) said the COVID-19 pandemic has made them less likely to visit their GP if they experienced extremely cold hands and feet or chilblain-like inflammation.

Steph Rolfe, 39, who lives in Surrey, has been living with Raynaud’s since she was a teenager. Despite living with symptoms for decades, she was only diagnosed after a severe Raynaud’s attack saw her taken to hospital in December 2019.

Steph said: “I noticed that my hand was getting colder and colder, and by the time I got home it had actually turned blue. I sat at home for a good couple of hours under a blanket, but it wouldn’t warm up. It wouldn’t turn back to its normal colour, so me and my husband decided to take me to the hospital.”

Whilst in hospital, Steph was tested for blood clots and had CT and MRI scans. She was there for five-to-six hours in total but continued to be an outpatient for six weeks while doctors investigated. It was during this time that she was told she had Raynaud’s and was prescribed nifedipine, a blood pressure drug that can also help minimise Raynaud’s attacks.

Steph continued: “I can’t remember what tablets the doctors gave me at first, but they didn’t work so I had to go back to hospital a couple of weeks later. I saw a different doctor who prescribed nifedipine and that really helped the swelling and the coldness in my hand. The coldness from everywhere in my body disappeared as soon as I started taking it."

She added: “I’ve always suffered with cold feet, hands and other extremities like my ears and nose, but because my sister had the same sort of symptoms, I thought it was just who we were. When I was younger, even up until 2018 -19, I would have to be really, really, really cold for my hands, feet, ears and nose to hurt. Now, it doesn’t take a lot for them to start hurting. If I don’t wear gloves it’s painful and I can’t grip stuff, but the bits that hurt the most are probably my nose and ears because I can cover everything else up."

This February is Raynaud’s Awareness Month and SRUK is calling on adults to make time to understand the signs of Raynaud’s, and for anyowne who may be experiencing symptoms to take the charity’s simple, online test.

The test, which has been developed in conjunction with clinical experts and delivers results in around 60 seconds, will allow people to find out more about Raynaud’s, how to manage it and advise if a GP visit is required.

For more information about Raynaud’s, the signs to look out for and how to manage symptoms, or take SRUK’s online test, please visit sruk.co.uk/testme