How to tell in 60 seconds if you're suffering a condition as common as hayfever, but 'few people have ever heard of it'
Health experts are urging people to test themselves for a condition that is 'as common as hayfever, yet few will have ever heard of it'.
Around 10 million people in the UK today suffer with Raynaud's – a vascular condition that causes numbness, tingling, skin colour change and pain in fingers and toes due to fluctuating and cold temperatures, or stress. Raynaud's can also be the first sign of rare but more serious, life-limiting auto-immune condition like scleroderma, which sees the hardening of skin and sometimes, internal organs.
Health charity Scleroderma & Raynaud's UK (SRUK) is urging the public to take a 60-second online test to find out if they may have the condition. Raynaud's is caused by the acute narrowing of blood vessels in the body's extremities, notably fingers and toes, due to fluctuating temperatures or stress.
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This can result in a range of symptoms including numbness, tingling, swelling, skin colour changes or pain. Most will have 'primary Raynaud's' and won't experience any additional underlying complications. For some, however, Raynaud's is a sign of a life-limiting health condition such as scleroderma, lupus and vasculitis. This is known as 'secondary Raynaud's', says the charity.
"When I get a Raynaud's attack I cannot do a thing with my hands. I get red lumps on my hands that look like chill blains and they're swollen, sore and look like sausages," explains Maxine Harris, a 61-year-old Raynaud's sufferer from Manchester.
Asma Pandor, 44-year-old, primary school teacher, shared her experience: 'From the age of six, I began to experience symptoms of Raynaud's. I moved to the UK from Africa in 1987 with my family on a snowy January day.
"My hands would go white and numb on the way to school as a child. For years, I was told the symptoms were due to poor circulation and I wasn't given any further information or a diagnosis.
"At 14-years-old, I took matters into my own hands and started to do my own research on the internet and discovered that I may have Raynaud's. I have since been diagnosed with Limited Cutaneous Systemic Sclerosis (a form of Scleroderma) after experiencing other symptoms such as Calcinosis.
"I recently took the online Raynaud's test out of curiosity and to support further research into it. I hope more people will take the test, not only to help identify if they might be affected by the condition but also to support research and treatments for the minority of us that are diagnosed with more severe auto-immune conditions.'
There are important distinctions that can be made in the symptoms of those with primary and secondary Raynaud's, but insufficient research into the condition means limited understanding on this. Greater participation in SRUK's online test and medical survey is needed to gain deeper insight into the different manifestations of the Raynaud's phenomenon, the charity says.
More than 31,000 people who have already taken part since the campaign's launch in mid-November last year. Some 93% received results that indicated they may have the condition and should seek support, said SRUK.
Out of those flagged by the test as potentially having Raynaud's, over 2,000 people completed a further anonymous medical survey. But more data is needed to strengthen the study's robustness, says the charity.
The anonymous data gathered will be vital to inform research into Raynaud's and other severe, related auto-immune conditions like scleroderma - and might help in improving diagnosis and treatment. SRUK hopes this will become the largest 'citizen science' project of its kind into Raynaud's.
The research project is led by SRUK in partnership with Professor Francesco Del Galdo, Associate Professor of Rheumatology at University of Leeds and Rheumatology Consultant at Leeds Teaching Hospital NHS Trust.
Professor Francesco Del Galdo said: 'The more people take the online test the better we will understand unknown implications of Raynaud's. The data collected will shed light on the different aspects of Raynaud's attacks as well as the impact on people's health, lifestyle and social factors.'
'Medical research is critical for making new discoveries, to help those affected better manage symptoms and even, find a cure. Citizen science offers an especially unique opportunity to crowdsource data that we otherwise might not have access to through formal channels, in a way that reflects real-world conditions and diverse populations. With your help, we can make great strides for the millions affected by Raynaud's.'
Sue Farrington, Chief Executive, SRUK, said: 'We are asking as many people as possible who think they may have Raynaud's to take our simple online test and be part of the answer. The more insights we gain through our citizen science project, the better we can advocate for people living with the condition and provide tailored treatment and care options. This is especially urgent as we are facing a considerable gap in information.
'We have found that a significant proportion of the population are unlikely to see their doctor if they experience cold hands and feet regularly (46%) or if they suffer with chilblains – swollen, blistering patches of skin (52%).
'Since 2016, there have only been ten clinical trials on scleroderma patients completed in the UK and only one active clinical trial on Raynaud's.'
To take the online test visit: http://www.sruk.co.uk/testme
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I moved to the UK from Africa in 1987 with my family on a snowy January day. "My hands would go white and numb on the way to school as a child. For years, I was told the symptoms were due to poor circulation and I wasn't given any further information or a diagnosis. "At 14-years-old, I took matters into my own hands and started to do my own research on the internet and discovered that I may have Raynaud's. I have since been diagnosed with Limited Cutaneous Systemic Sclerosis (a form of Scleroderma) after experiencing other symptoms such as Calcinosis. "I recently took the online Raynaud's test out of curiosity and to support further research into it. I hope more people will take the test, not only to help identify if they might be affected by the condition but also to support research and treatments for the minority of us that are diagnosed with more severe auto-immune conditions.' There are important distinctions that can be made in the symptoms of those with primary and secondary Raynaud's, but insufficient research into the condition means limited understanding on this. Greater participation in SRUK's online test and medical survey is needed to gain deeper insight into the different manifestations of the Raynaud's phenomenon, the charity says. More than 31,000 people who have already taken part since the campaign's launch in mid-November last year. Some 93% received results that indicated they may have the condition and should seek support, said SRUK. Out of those flagged by the test as potentially having Raynaud's, over 2,000 people completed a further anonymous medical survey. But more data is needed to strengthen the study's robustness, says the charity. The anonymous data gathered will be vital to inform research into Raynaud's and other severe, related auto-immune conditions like scleroderma - and might help in improving diagnosis and treatment. SRUK hopes this will become the largest 'citizen science' project of its kind into Raynaud's. The research project is led by SRUK in partnership with Professor Francesco Del Galdo, Associate Professor of Rheumatology at University of Leeds and Rheumatology Consultant at Leeds Teaching Hospital NHS Trust. Professor Francesco Del Galdo said: 'The more people take the online test the better we will understand unknown implications of Raynaud's. The data collected will shed light on the different aspects of Raynaud's attacks as well as the impact on people's health, lifestyle and social factors.' 'Medical research is critical for making new discoveries, to help those affected better manage symptoms and even, find a cure. Citizen science offers an especially unique opportunity to crowdsource data that we otherwise might not have access to through formal channels, in a way that reflects real-world conditions and diverse populations. With your help, we can make great strides for the millions affected by Raynaud's.' Sue Farrington, Chief Executive, SRUK, said: 'We are asking as many people as possible who think they may have Raynaud's to take our simple online test and be part of the answer. The more insights we gain through our citizen science project, the better we can advocate for people living with the condition and provide tailored treatment and care options. This is especially urgent as we are facing a considerable gap in information. 'We have found that a significant proportion of the population are unlikely to see their doctor if they experience cold hands and feet regularly (46%) or if they suffer with chilblains – swollen, blistering patches of skin (52%). 'Since 2016, there have only been ten clinical trials on scleroderma patients completed in the UK and only one active clinical trial on Raynaud's.' To take the online test visit:
