Helping patients carry the burden of IBD in Latin America
World IBD Day is being held on 19 May 2016. Fundación Mas Vida de Crohn & Colitis Ulcerosa (Argentina) are running #PerspectivasEII, an awareness campaign to mark the Day.
Contributed by Luciana Escati Peñaloza, President, Fundación Mas Vida de Crohn & Colitis Ulcerosa.
What is IBD?
Inflammatory Bowel Disease (IBD) is a group of autoimmune, inflammatory, chronic diseases of the gastro-intestinal tract, which includes Crohn's Disease (Y), ulcerative colitis (UC) and Indeterminate Colitis (CI). It shares symptoms and signs with other digestive diseases making a correct diagnosis more difficult. World IBD Day will be held on May 19, 2016. It is a global initiative led by patients' organizations, patients and relatives across five continents in order to disseminate and provide information that will raise the level of awareness of the major signs and symptoms of these conditions.
An accurate diagnosis in a timely manner
Increasingly, efforts by the scientific community, patients' organizations and/or families aim to emphasise the importance of an accurate diagnosis in a timely manner. As IBD is a set of organic diseases (one caused by a physical or physiological change to some tissue or organ of the body), as chronic inflammation of the gastrointestinal tract, the impact of not being treated properly can have specific consequences according to the patient's age. In childhood the main consequence is the delay in growth and development, and may affect the quality of life and social and educational development of the child. Meanwhile, in adult patients IBD has a profound impact on quality of life, relationships, social life and work. In a high percentage of patients – children, adolescents and adults – the symptoms provoked by the disease classify them as disabled.
In Latin America
In Latin-America, IBD is included within the so-called "rare diseases" group. According to Fundación Mas Vida Crohn's y Colitis’s report after its campaign for World IBD Day 2015, “Detección precoz gratuita de la EII”, the prevalence rate is low (1: 2000), as is the level of information and general knowledge. There are few specialized professionals trained to treat patients and frequent delays in medical consultation since the signs and symptoms tend to be confused with other diseases. Patients often try to cope with self-medication or exclusion diets.
The statistical results show the importance of establishing strategies and actions to provide citizens with concrete tools to improve their health. In this sense, from the Argentinean experience, it has been observed that new technologies are an ideal instrument to overcome the challenges posed by the wide geographical distribution of potential patients. Specifically, social networks have been successful and cost-effective (see videos of the campaign of 2015).
Thus, during World IBD Day, we will carry out the #PerspectivasEII campaign to build empathy around the realities of people affected and raise the level of awareness on IBD using art. The #PerspectivasEII will be shared through images and will help raise awareness among followers of social networks. The images can be found on Instagram under the hashtag #PerspectivasEII. You can follow Fundación Mas Vida Crohn's y Colitis on Instagram for more: @fundacionmasvida.
Image from Fundación Más Vida de Crohn & Colitis Ulcerosa instagram page: https://www.instagram.com/fundacionmasvida/