Be Part Of The Answer

Scleroderma & Raynaud's UK (SRUK) is calling for a minimum of 10,000 people to spend 60 seconds taking the first step towards helping unlock potential breakthroughs in diagnosis and treatment for Raynaud’s and other debilitating autoimmune conditions like scleroderma, lupus and vasculitis.

The charity is asking people to take its one minute online test that reveals if you could be suffering from Raynaud’s, which is estimated to affect up to 10 million people in the UK and can be an indicator of more serious, life limiting conditions such as scleroderma. Symptoms of Raynaud’s include numbness, tingling, skin colour change or pain in fingers and toes in response to different temperatures or stress and a stinging or throbbing sensation when they warm up after exposure to the cold, which is why the campaign is launching as we enter a cold spell.

Those the test indicates may have Raynaud’s will be directed towards sources of advice and help, as well as further ways to participate in the citizen science project. This includes an invitation to take a short, anonymous medical survey, as well as register their interest in downloading SRUK’s Symptom Tracking App for Raynaud's (STAR) when it is released early next year, which can help people to better manage the condition. The anonymised data captured through the app will support scientific research into Raynaud’s, scleroderma, and other related autoimmune conditions, about which currently little is known. Since 2016 just 10 clinical trials in scleroderma have been completed in the UK, and there is just one active or upcoming clinical trial in Raynaud’s in the UK and four globally.

Dr Punam Krishan, NHS GP, BBC Morning Live Resident Doctor & Author, said:

“Contributing to medical research projects doesn't have to be a complex and invasive process – mass ‘citizen science’ projects such as the ZOE COVID Symptom Tracker App showed how valuable simple health data could be in helping medical professionals to learn more about a condition and therefore offer faster diagnosis and protect lives.

“With your help, we can take similar steps forward for patients living with Raynaud’s, scleroderma, and other related conditions by sparing just one minute to take SRUK’s online test. I’ve already taken the test and encourage as many people as possible to do the same. This campaign is one particularly close to my heart as I know just how challenging the condition can be.”

Nearly one in six people in the UK are affected by Raynaud’s disease, where the small blood vessels in the extremities such as the hands, feet, fingers, or toes are oversensitive to even the slightest change in temperature and sometimes, emotional stress. This results in the skin turning white, then blue and finally to red as circulation returns, and can often be accompanied by numbness or pain.

Karen Raney-Marr, who lives with Raynaud’s, said:

“For many years I suffered with cold fingers and toes that also became numb or painful and, at times, changed colour. I was struggling to do normal, everyday activities. I eventually got a Raynaud’s diagnosis from my GP, and now take medication to manage my symptoms. I still, however, usually have a Raynaud's attack every day, which can be triggered by anything from getting in or out of the shower or a breeze on a hot day. The attack can lead to chilblains, cracked hands and swelling. I wear gloves for most of the year and layer up when I go into air-conditioned spaces like supermarkets.

“I hope as many people as possible will take SRUK’s online test. If I'd known about the test in my teens, I probably wouldn't have had to wait so long for a diagnosis. Not only will the test help you find out quickly if you may have Raynaud’s but going on to use the STAR app when it launches could also lead to medical breakthroughs and new treatments. All you need to do is spare one-minute. Less time than it takes to make a cup of tea!”

For roughly 300,000 people, they may have ‘secondary Raynaud’s’, which is a sign of another underlying autoimmune condition like scleroderma. This is a chronic and debilitating condition, affecting the skin and internal organs, which in some cases can be life threatening.

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. Together, they are developing the STAR app due to be released early next year. The app will allow people to keep track of their symptoms, their pain, frequency of attack and monitor changes over time. The anonymised data captured from the STAR app will also feed into scientific research conducted by Professor Del Galdo and his team, to improve the diagnosis rates and treatment of Raynaud’s and other related autoimmune conditions.

Professor Francesco Del Galdo, said:

“Raynaud’s is as common as it is hard to manage. People with Raynaud’s and their doctors do not have a simple blood test to tell them how the condition is progressing or responding to treatment. So, patients need to keep a mental note of their symptoms and report them at their sporadic appointments with their healthcare professional. The STAR App will offer a handy and simple-to-use tool to track Raynaud’s attacks, associate them with other symptoms, physical activity, and the weather, and will provide both patients and doctors a reliable tool to measure the impact of Raynaud’s.”

Sue Farrington, Chief Executive, SRUK, said:

“There is so much we don’t know about debilitating auto-immune conditions like scleroderma and lupus, but we do know that many of the answers, the keys to unlocking breakthroughs in diagnosis and treatment, could start with the millions of people who have Raynaud’s. That’s why we are calling on as many people as possible who think they might have Raynaud’s, to take our simple test and be part of the answer.”

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.

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

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.