Break the silence: shining a light on IBD

May 13, 2021     

In recognition of World IBD Day on May 19, leaders from the European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA) — Maria Stella De Rocchis, EFCCA project coordinator, and Magdalena Sajak-Szczerba, an EFCCA board member and representative of the Polish IBD association Towarzystwo "J-elita" — discuss the importance of this year's theme, “Break the Silence,” the need to amplify the voice of people living with inflammatory bowel disease (IBD) and how the community can come together to show support for those impacted. 

Inflammatory bowel disease (IBD)

EFCCA, representing 41 national Crohn’s disease and ulcerative colitis (UC) patient associations, is an organization united in the commitment to improve the lives of people living with IBD worldwide and to give them a louder voice and more visibility. 

World IBD Day provides us the opportunity to recognize the more than 12 million people worldwide who are living with IBD. At Bristol Myers Squibb, we are pursuing pathbreaking science and innovative solutions to change the course of immune-mediated diseases like IBD so, together with the community, we can help those impacted raise awareness and prevail over these serious conditions.

— Jonathan Sadeh, vice president and head of Immunology Development, Global Drug Development, Bristol Myers Squibb.

Magdalena Sajak-Szczerba (left), EFCCA board member and representative of Polish IBD association Towarzystwo "J-elita" and Maria Stella De Rocchis (right), EFCCA project coordinator

Magdalena Sajak-Szczerba (left), EFCCA board member and representative of Polish IBD association Towarzystwo "J-elita" and Maria Stella De Rocchis (right), EFCCA project coordinator

What are your goals for World IBD Day?

Magdalena Sajak-Szczerba: World IBD Day was created in 2010 by the five founding members of EFCCA, including the Crohn’s & Colitis Foundation (US), the Crohn’s and Colitis Foundation Canada, Crohn’s & Colitis Australia, Crohn’s & Colitis UK, ABCD (Brazil) and the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA).

Each year, World IBD Day aims to unite people worldwide in their fight against Crohn’s disease and UC. We show support for people living with these conditions, raise awareness and start a dialogue on the psychological impact of the disease. 

How did you decide on the theme “Break the Silence”?

Maria Stella De Rocchis: We know that the IBD community often doesn't communicate about how their disease impacts their lives. Many people don't talk about how they feel. For example, they feel emotional pain or are unhappy with their self-image but do not feel comfortable talking about it. 

As part of the “Break the Silence” theme, we are highlighting IBD and well-being. We want to start a dialogue and raise awareness on the psychological impact of IBD, provide the public, healthcare providers and other stakeholders with a better understanding of IBD and well-being, and work together to identify solutions that will have a meaningful impact on a person’s quality of life.

Why is it important to amplify the IBD patient voice and unmet needs?

Magdalena: There is little public awareness of the pain and chronic suffering that people living with IBD courageously cope with every day. Their diseases are invisible.

Through outreach and awareness around World IBD Day, we encourage people living with IBD to record their testimonials on how IBD has impacted their lives. We can use this information to have informed discussions with stakeholders to find solutions. 

How has COVID-19 impacted the IBD patient/advocate community?

Maria: COVID-19 changed everyone's life and how we see the world. For people living with IBD, this new reality of social distancing and isolation was something the community already knew and understood. One way that COVID-19 impacted the IBD community was access to healthcare and continuum of care. Some people were afraid to go to the doctor for fear of exposure, possibly preventing much needed care. 

It also changed our EFCCA philosophy. Our goal every year is to meet in person with our community to share ideas and let them know that we are there for them. We had to adapt how we connect with and support our members. We fielded a survey of 4,000 people from the IBD community to better understand how everyone was coping and what support we could provide. 

What message do you have for the IBD patient/advocate community?

Magdalena: Use World IBD Day as an opportunity to be more visible, to be part of this community, to fight against IBD.

For people living with IBD, "talk, talk, talk." Break the silence around the disease - talk about problems and emotions. The more we are able to talk about it, the better for everyone, and we can move towards finding solutions.

Maria: Our motto at EFCCA is "United We Stand". Our mission is to improve the lives of people living IBD and find a cure. These two things can only happen when we are united and we communicate. 

Learn more about EFCCA here

related content