Be Part Of The Answer

SRUK is urging the public to #BePartoftheAnswer and take our 60-second online test to find out if they could be among the one-in-six people living with Raynaud’s.

Over 31,000 people have already taken the test since our #BePartOfTheAnswer campaign launched last November. An astounding 93% received results that indicated they could be affected and should seek further support. Among these people, one-in-five already had signs of digital ulcers – or breaks in the skin – that could suggest an underlying autoimmune condition such as scleroderma. 

As the only UK charity dedicated to improving the lives of people with Scleroderma and Raynaud's, we hope this will become the largest ‘citizen science’ project of its kind into Raynaud’s. The results are vital, and will inform research into other severe autoimmune conditions linked to Raynaud’s and help people manage the debilitating symptoms. As ever, we are incredibly grateful to everyone who got involved and shared their own stories to help us raise awareness.

Asma, 45, from Leicester, said: 

“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 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 autoimmune conditions.”  

Of many the people flagged by the test as potentially having Raynaud’s, over 2,000 have also completed a further anonymous medical survey. The data gathered will play a crucial role in advancing scientific research into Raynaud’s and other associated, autoimmune conditions. But more data is needed to maximise the impact of the study, that could in time help to open up new avenues of care and treatment. 

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. This can result in a range of symptoms including numbness, tingling, swelling, skin colour changes or pain. Most people 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’. 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 essential to gain deeper insight into the different manifestations of the Raynaud’s Phenomenon. By getting involved, you can help us make a difference.

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.” 

The #BePartOfTheAnswer 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.” 

To take the online test visit: http://www.sruk.co.uk/testme  

SRUK is the only UK Charity dedicated to improving the lives of people with scleroderma and Raynaud's phenomenon. It works to improve awareness and understanding of these conditions, to support those affected, fund groundbreaking research and ultimately, to find a cure.

Read more about how to Be Part of the Answer 

Follow the campaign on social media:  Facebook.com/WeAreSRUK / Instagram.com/wearesruk or join the online conversation using #BePartOfTheAnswer.