PEOPLE WITH inflammatory bowel disease (IBD) suffer discrimination and do not get the treatment they need, a new European-wide report suggests.
The results of a European survey of people with Crohn’s disease and colitis, which together make up IBD, found a quarter of those with the disease reported complaints or unfair comments at work and 40 per cent claimed it prevented or caused the end of intimate relationships.
Speaking at a conference entitled Join the Fight Against IBDin Barcelona, IBD advocate Marco Greco described the findings as "unacceptable" and a "wake-up call" for those involved in treating such patients. Mr Greco is the chairman of the European Federation of Crohn's Disease and Ulcerative Colitis Associations (EFCCA) and a patient with Crohn's disease.
IBD is an autoimmune disease which is mostly prevalent in developed countries. There are an estimated five million sufferers worldwide and 20,000 in Ireland. Symptoms during flare-ups include stomach cramping, bloody diarrhoea and fatigue which persists even after the initial flare-up has subsided.
Mr Greco told the conference in Barcelona’s Olympic Stadium that advances in biologic medicines and new therapies were moving closer to a cure.
The Hospital Clinic in Barcelona is pioneering the use of stem cell transplantation of damaged cells in the gut. The treatment has dramatically changed the course of the disease in a significant number of patients with advanced Crohn’s disease.
Some 74 per cent of European patients have to take time off work and more than a quarter take at least 25 days a year. The Impact survey of almost 5,000 patients in 24 countries found that 64 per cent of patients had an emergency admission to hospital before being diagnosed. The results were broadly similar in an Irish context with 90 per cent being hospitalised sometime in the past five years.
Geraldine Murphy, chairwoman of the Irish Society for Colitis and Crohn’s Disease (ISCC), said IBD can lead to feelings of isolation and loneliness.
The ISCC’s information meeting is on March 3rd in the Harlequin Hotel, Castlebar, 2pm-5pm, hosted by consultant gastroenterologist Dr Luke O’Donnell. The ISCC open day is on Saturday April 21st in Wynne’s Hotel, Dublin, 2pm-5pm.
