When you live with a chronic condition like inflammatory bowel disease (IBD), it can feel like you’re the only person going through it. In reality, nearly
On May 19 of each year, people from around the world come together to take part in an event that shines light on Crohn’s disease and UC, the two maion types of IBD.
World IBD Day gives people with Crohn’s disease and UC a chance to increase awareness about their condition and raise money to support research toward a cure.
This kind of visibility is critical for health conditions like IBD.
It’s sometimes called an invisible illness because symptoms like abdominal pain and fatigue are difficult for others to see. Plus, people with the condition might feel embarrassed or hesitant to talk about it.
“IBD can be hard to talk about for some people, so by providing them with easy ways to start the conversation, we hope that they will start a dialogue about their disease and help educate others,” says Rebecca H. Kaplan, associate director of marketing and communications for the Crohn’s & Colitis Foundation.
To commemorate World IBD Day, countries around the world launch social media campaigns to spread the word about Crohn’s disease and UC.
Many countries light up landmarks in purple, the color of IBD awareness. The Story Bridge in Brisbane, Australia, and Bulgaria’s National Palace of Culture are just two of the iconic structures bathed in purple light on May 19.
In the United States, the day’s events are mainly held online. The Crohn’s & Colitis Foundation hosts live social media chats, shares patient stories, and provides tools for people to create their own infographics to educate friends and family about the condition.
The event resonates with the IBD community. Each year, Kaplan hears from members about how easy it is to participate and how the campaign makes them “truly feel empowered and supported.”
A lot of preparation goes into planning the World IBD Day events.
First, the Crohn’s & Colitis Foundation identifies the issues that matter most to people with this condition. Important topics might include managing symptoms, finding support, or addressing the high cost of care, Kaplan says.
“We also look at what our international partners are doing and incorporate their theme and hashtags into our overall campaign,” she adds.
Chapters of the Crohn’s & Colitis Foundations around the world create shareable templates, online content, social media posts, and other tools to help people spread the word about their condition.
A one-day-per-year event can capture only a small part of what it’s like to live with a chronic condition. For people with IBD, the condition is front and center in their mind 365 days per year.
That’s why the Crohn’s & Colitis Foundation advocates on behalf of its members year-round.
The organization hosts support groups to connect patients and caregivers with people who really understand what they’re going through. It provides educational resources to help people with IBD:
- learn about diet and nutrition
- address mental health concerns
- manage their finances
“We also advocate for the passage of public policies that address issues of concern for IBD patients and caregivers,” Kaplan says.
One current advocacy effort by the Crohn’s & Colitis Foundation is to reform step therapy.
Currently, if you have IBD and health insurance, your insurance company may require you to try one or more drugs and wait to see whether they fail to help your condition — a process known as step therapy — before they’ll pay for the medication your doctor says you need.
The Foundation wants people to have faster access to the medications they need to manage their condition.
The Crohn’s & Colitis Foundation is also trying to get a law passed that would improve health insurance coverage for medically necessary foods. And it’s trying to secure additional government funding for medical research in order to add a wider range of new IBD treatments to the pipeline.
Kaplan says the Crohn’s & Colitis Foundation is planning another annual event, Crohn’s & Colitis Awareness Week, which is held from December 1 to 7 each year.
“Once Awareness Week takes place, we will begin planning for World IBD Day 2022, so stay tuned!” she says.