Scientists mapping the extent of Inflammatory Bowel Disease (IBD) in the UK are asking the public to help. Crohn's Disease and Ulcerative Colitis are the two main forms of IBD and affect more than 500,000people in theUK.
These are long-term conditions that involve inflammation of the gut and it is not known exactly what causes the illness. There remains no medical cure.
Now a group of researchers and clinicians want to find out if where you live influences whether you have Crohn's Disease, Ulcerative Colitis, microscopic colitis or indeterminate ("unclassified") IBD.
The team includes Professors Roger Pickup and Peter Atkinson, Dr Manoj Roy and PhD student Mehmet Veral from Lancaster University with Dr Glenn Rhodes from the UK Centre for Ecology and Hydrology with Professor Jeremy Sanderson and Dr Gaurav Agrawal from Guy's and St Thomas' NHS Foundation Trust in London.
The scientists are appealing to anyone diagnosed with IBD to spend a few minutes completing a brief survey.
The information provided for this study will help us assess whether geography influences IBD and whether it could be a target for further research. We may discover patterns that might provide some clues to the cause and help improve the treatment of IBD sufferers in the future."
Roger Pickup, Professor, Lancaster University
The symptoms of Crohn's and Colitis vary enormously but chronic exhaustion and chronic diarrhoea are common, affecting almost 90% of people with active Crohn's or Colitis like Juliet, who says, "I think a good way to explain fatigue to people is that, even after a good night's sleep, your body is still physically exhausted. Although rest can help, a good sleep doesn't always take it away!"
Other people with IBD comment that: "I may not look disabled, but I have an invisible condition. People with invisible conditions have just as much right to use the accessible toilet as a person in a wheelchair. Not all disabilities are visible."
The survey will take approximately 10 minutes. It includes a Participant Information Sheetdescribing the project followed by a Consent Form before the survey itself. This is a brief series of questions including your postcode and where you lived previously.
The survey is anonymous and all information will be treated in confidence.