SRUK shares powerful new evidence on living with Raynaud's
A new report has been published by PIF member Scleroderma & Raynaud’s UK (SRUK) highlighting the daily challenges faced by people with Raynaud's and the urgent need for more research and better treatments. More than 4,200 people responded to a survey and shared powerful new evidence about symptoms, triggers, daily impact, coping strategies, and experiences with healthcare. The findings show that Raynaud’s impacts the whole body, daily life, emotions and overall quality of life.
What the survey revealed
The report says the survey results show Raynaud’s is often more complex, painful and wide‑ranging than many people expect. Alongside colour changes, people described numbness, tingling and pain – sometimes severe and overwhelming. Some reported pain intense enough to cause nausea or distress, while others experienced such deep numbness that they injured themselves without realising.
Respondents consistently described Raynaud’s as having a significant impact on their quality of life. People also shared practical strategies to manage symptoms and their experiences of healthcare and treatment.
'Fantastic insight'
SRUK's CEO Sue Farrington, who is also PIF's chair, joined BBC Breakfast to discuss the research findings and shared how the survey results had given "fantastic and better insight" into the condition and what it is like to live with it.
More research needed
SRUK is calling for larger, more inclusive research to capture the real experiences of people living with Raynaud’s phenomenon, and to understand how factors such as age, gender, ethnicity and socioeconomic background affect symptoms and outcomes. The charity said: "The results make one thing clear: we need more research to better understand Raynaud’s, how it interacts with other conditions, develop better treatments, and improve care for everyone affected."
Read more and download the report on the SRUK website here.
You can watch Sue Farrington's appearance on BBC Breakfast via Facebook here.