I’m a little tired of being “resilient,” aren’t you?
I’m told I’ve developed resiliency, and that’s how I’ve made it through the difficulties with my illnesses (ulcerative colitis and others) and their treatments, such as surgeries. I don’t really think of it that way, however. My perspective on resilience is that I don’t see how I could exist without it.
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Living with inflammatory bowel disease (IBD)—including Crohn’s disease and ulcerative colitis—is an isolating and overwhelming experience. Patient advocacy is a powerful way to channel these challenges into meaningful change for the entire IBD community. In episode 186 of About IBD, Kelly Dwyer and I shared our journeys, practical advice, and insights on how anyone can become an effective advocate, regardless of experience or background.
Here you’ll find a roadmap for patients, caregivers, and allies who want to make a difference in public policy.
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Every person living with inflammatory bowel disease (IBD) can help change public policy by sharing their story and participating in advocacy events, such as visiting legislators in Washington, D.C. Amber talks to Kelly E. Dwyer, who teaches us how to prepare an elevator speech and gives us practical tips for Hill Day logistics, working within teams, staying emotionally resilient, and following up with staffers. Advocacy is for everyone, and persistence and collaboration can lead to real policy changes to benefit the IBD and chronic illness communities. By the end of the episode, you’ll have the real resources you can use to do this work as a patient advocate both locally and nationally.
Community can help people with IBD access disease information and feel less alone. Amber talks with Aaron Blocker about the importance of finding and creating community for those living with IBD. They explore how online groups provide support and counter misinformation, while also discussing the importance of being cautious when sharing personal experiences online. They emphasize the importance of authenticity, learning from mistakes, and prioritizing the well-being of others.
Amber and gastroenterologist Dr Neil Parikh discuss technology’s impact on IBD management. Dr Parikh emphasizes the importance of patient diaries and open communication between patients and providers. They also address concerns about data privacy, integrating holistic approaches in patient care, and the potential of wearable technology in gastroenterology.
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Amber is joined by Stacy Dylan, co-founder and executive director of Connecting to Cure Crohn’s and Colitis (CtoC). CtoC is a patient advocacy group focused on addressing unmet needs in the IBD community. Stacy founded CtoC to help other families after her son was diagnosed with Crohn’s disease. CtoC offers support groups, mentorship programs, and gut-friendly workouts. Stacy offers advice to parents of children with IBD, encouraging them to take things one step at a time and not be overwhelmed by information from the internet.
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A diagnosis of inflammatory bowel disease (Crohn’s disease, ulcerative colitis, IBD) affects the entire family. When it’s a child that’s diagnosed, it changes so many things and brings a host of challenges. Families experience many unmet needs related to IBD. My guest is Lisa Fournier of IBD Connect. Lisa is the mother of two children who live with IBD. Her experiences in helping them manage IBD at different stages in life compelled her to be a support for others. She worked with her local hospital to start a support group and eventually founded IBD Connect. Learn about the programs IBD Connect offers and how the community can support their important mission.
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I remember the first article I wrote about the Patient Protection and Affordable Care Act (ACA). It was in 2010.
During my research, I saw that part of the legislation was that “pre-existing conditions” could no longer be used to deny insurance coverage, starting in 2014.
The implications were so personal and important to me that I cried.
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The impact of human activities on the environment is well-documented. Many people are concerned about how their daily lives can have a negative effect on the air we breathe, the water we drink, and the health of ourselves and of our children. My background is in environmental science: it began in high school when I worked to institute a recycling program in the lunchroom. I went on to earn my Bachelor of Science in Environmental Science from Michigan State University.
While there’s nothing we can do about having inflammatory bowel disease (IBD), there is something we can do about how it impacts our environment. Crohn’s disease and ulcerative colitis need treatment over a lifetime and this comes with a variety of choices. Environmental responsibility may be pretty far down on the list of things most people with IBD are concerned about, but there are some simple choices we can make that can have an impact.
The place were we have a lot of control as patients is in our own home and in how we manage our disease (alongside our healthcare teams). A few little changes can make a positive impact in how your IBD affects the word around you. I present some areas where we can think about making choices in regards to our IBD that may help us leave a smaller footprint.
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In the final episode of my Summer of Activism Series, I asked Brooke Abbott of The Crazy Creole Mommy Chronicles to help us better understand Congressional Briefings. During Crohn’s and Colitis Awareness Week, she spoke at a briefing about IBD and minority health. It was an opportunity to bring awareness to this little-discussed factor of IBD and it presented some challenges and opportunities. Learn more about Congressional Briefings, how they are an important tool for advocacy groups, and how they have an impact on public policy.