• Our bold new strategy – childhood unlimited by inflammatory bowel disease

    In 2018, we will have been supporting children with crohns and colitis, and their families, for forty years. In that time, we have seen a dramatic increase in the number of children being diagnosed with inflammatory bowel disease. At the same time, through our research programme, CICRA supporters have funded many paediatricians to specialise in gastroenterology and although not yet sufficient to ensure every child can be seen by an expert, this has helped medical care try and keep pace with the growing prevalence of the conditions in children. Our supporters have also funded research that has led to a greater knowledge of how IBD affects young people’s lives physically and emotionally, and the ongoing impact into adulthood. We have developed better treatments such as enteral nutrition and projects we are currently funding are looking at the opportunities for personalised medicine in the future.

    In 2017, we surveyed children and families to understand what mattered most to them. Although the dream of a cure featured highly, it was the impact of IBD on childhood that was their greatest concern, so achieving remission was more important in the here and now than a future cure. We know that the disruption of a serious illness can drag down educational achievement and physical and mental development, causing problems for children when they become adults. The survey also told us that there were considerable difficulties in getting schools, teachers and friends to understand IBD and how it affects children. Information was crucial in countering this lack of understanding, and children and families also needed supporting. Despite our deep desire to find a cure, one we know is shared by everybody affected by crohns and colitis, this strategy focusses on more realistic – but still ambitious – objectives: to overcome each challenge faced by children and families, so that they can live unaffected by IBD and have the childhood they so desperately want. This is the next best thing, as good as a cure.

    When we succeed, this will mean:
    • symptoms are well controlled with limited side effects from the drugs many need
    • teachers and friends understand the impact of the condition and support children and parents so they get a good education and lead a full social life
    • information and support is easily available to help them manage their IBD and live their life without worrying.

    To achieve our ambition in ten years will take a lot of hard work, and will depend on the invaluable contribution of healthcare professionals, researchers and fundraisers. But we’ve done so much already, and we are all committed to the same goal of giving children a childhood unlimited by crohns and colitis.