by Rod Mitchell, CICRA Trustee and former Chair of the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA)
While it has been 50 years since the birth of the first foundations in North America representing patients with inflammatory bowel diseases (IBD), the movement in Europe is about 10 years younger. In 1967 the Crohn’s and Colitis Foundation of America (CCFA) was founded to research IBD and assist the rising number of patients. Increasingly adult gastroenterologists, surgeons and other health professionals, especially those attending congresses and working on secondment in the USA and Canada, were hearing about growing numbers of Regional Ileitis/ Crohn’s and colitis patients being diagnosed across North America. Colleagues in developed countries, where IBD was also rising, began to see the value of patient groups.
Some 40 years ago and through talking to their patients and families, the gastroenterologists and other specialists began to work with small groups of likeminded families and patients diagnosed with IBD to help them cope better with their often long-term conditions. This was when, with limited knowledge and treatments, the more severe Crohn’s and colitis patients often needed surgery and long spells in hospital. With encouragement and support from medical professionals, national groups set up and often mirrored the structure of the growing numbers of major disease specific patient organisations. Crohn’s and colitis patient groups began to appear in Western European countries from about 1975 onwards, often with an informal structure and a few dedicated helpers providing basic phone contact.
Over the next decade more than 12 country associations across Europe, including the UK and others around the world, were formed. Children in the UK were first diagnosed with IBD in the late 70’s. As there was no organization for IBD a group of families launched the Crohn’s in Childhood Research Association (CICRA). CICRA has gradually adapted over the years to provide not only the funding for research but also a range of information and support for children, young people and their families, some members now well into adulthood. In 1979 the National Association for Colitis and Crohn’s disease (NACC), today known as Crohn’s and Colitis UK, was formed and until around ten years ago focused mainly on adults with the condition.
The numbers diagnosed around the world have risen sharply over those 40 years and continue to do so especially in younger people, children and toddlers. A European Federation of Crohn’s and Colitis Associations (EFFCA) was formed as an umbrella organisation in 1990. A global IBD group for professionals was launched and in 2001 a similar European group (ECCO) was born which has been invaluable, expanding our knowledge and research, assisted by pharmaceutical investment in new studies.
Around the world there has been much progress over the 4 decades with the development of information technology and e-Health systems, leading in many cases to, earlier diagnosis, less invasive tests, the availability of better drugs with reduced side effects, fewer hospital visits and an improved quality of life.
However Crohn’s and colitis are still complex diseases and much is still unknown about them so we continue to work together to solve the missing pieces of the jigsaw puzzle. CICRA will continue to be there for you and those who may need us in the future. The support of all continues to be necessary and we look forward to the day when we can say that we know “why” and we can “prevent”.