The general director of the Confederation of Associations of Crohn’s and Ulcerative Colitis Patients (ACCU Spain) and president of the Madrid Association, Ruth Serrano, explains in this article what these unknown diseases consist of, as well as the steps taken by the associations of patients to achieve visibility, social sensitivity, more pathology research and create common projects
Image of the 1st Congress of ACCU/Photo provided
by Ruth Serrano, director general of ACCU Spain
Inflammatory Intestinal Diseases (IBD) are a group of chronic and immune-mediated digestive pathologies that include Crohn’s Disease (CD) and Ulcerative Colitis (UC).
They are characterized by having a similar symptomatology, with symptoms such as abdominal pain, diarrhea, fatigue, blood in the stool, malnutrition and loss of muscle mass.
These pathologies have a great impact on the quality of life of people with IBD and alternate between active phases (flares) and inactive phases (remission). They show no differences in relation to age, sex or origin and their cause is still unknown.
The incidence of IBD is increasing and it is already a global disease emergency. In Europe, it is estimated that there are 3 million people diagnosed and, in Spain, it affects almost 1% of the population (about 360,000 people), with 10,000 new diagnoses every year.
Back to the beginning, peer support
The Confederation of Associations of Crohn’s and Ulcerative Colitis Patients (ACCU Spain) was born 35 years ago, from the hand of Dr. León Pecasse, with the sole intention of accompanying and improving the lives of people with IBD.
In this time, we have managed to grow to be 32 local ACCUs and more than 8,000 members throughout Spain, we have evolved over the years and have become more professional in order to provide better services to our group and its surroundings.
ACCU Spain acts at national level to give visibility to the disease; represent; lobbying for change (advocating for the needs of people with IBD); conduct and collaborate in research; encourage and help all local ACCUs to create common projects.
As said Dr. Pecasse, “Together we can be stronger, to overcome our own weaknesses and overcome the obstacles that society imposes on chronic patients”. This spirit has marked ACCU’s fundamental values since its inception: peer help and accompanying us so that the patient’s journey is more bearable and our disease ceases to be invisible in society.
Peer-to-peer support is our reason for being and, proof of this, are the Youth Days that have been held for more than 25 years in different parts of the national territory. This summer, we managed to get 50 young people with IBD to live together for a weekend and form strong bonds of friendship and camaraderie.
On the other hand, 150 other people of all ages came to our National Convention and shared this coexistence that is so important to us.
Great strides in inflammatory bowel disease
The reality of today’s associative world has changed and the weight of the voice of patient organizations is becoming stronger at different levels of health and social management.
In recent years, we have worked on our relationships with different scientific societies in our country to encourage networking.
In this sense, it has been a great success for us to have participated as speakers in different scientific conferences such as: the XXXIII annual meeting of the Spanish Working Group on Crohn’s Disease and Ulcerative Colitis (GETECCU); or the XXIII National Congress of Hospitals and Health Management; in addition to being actively present in patient committees of different hospitals and other socio-health entities.
Likewise, this year we celebrated the 1st International Congress of people with an IBD, where healthcare professionals and patients from national and international organizations debated the new challenges we face.
On the other hand, we have boosted our We Are One campaign for World IBD Day, collaborating with different entities and we have been warmly received by society, with more than 30 million impacts at international level, spreading the importance of inclusive environments for people living with an IBD.
Towards greater professionalization and the value of humanization
For 2023, we aim for a greater professionalization of our associative movement with projects such as the ACCU Academy for the training of our volunteers, representatives and technical teams; and we will continue to work hand in hand with our scientific society and generate quality projects.
At ACCU we are another decision-making agent in the socio-health sector and we have a multidisciplinary technical team expert in the socio-health and communication field that manages to build added value, from the patient’s perspective, unique and exclusive to people who live with a pathology
Many doors have been opened for us by the successes achieved and we will continue to move forward with the greatest enthusiasm towards a society that is totally inclusive.