Amber Tresca talks with Andrew Giffin, a product manager in Toronto who was diagnosed with Crohn’s disease at 19 after years of symptoms in high school. Andrew shares his experience navigating three major surgeries, adjusting his career path away from law enforcement, and learning to manage stress as part of living with a chronic illness. He also discusses developing apps, including Brown Note, a free, anonymous peer-support app for people with digestive diseases. Brown Note was inspired by his own feelings of isolation while preparing for his third surgery and is available on Apple, Android, and the web.
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Hospitals Are Investing in AI: What You Should Know
By now, you’ve heard lots about artificial intelligence (AI) in the news, from friends and family, online, and even at work. You may even be impacted by AI in a significant way, especially if you’ve been laid off from your job, or if you’re a social media manager.
Or: if you’re a patient.
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The Truth About Stigma and Acetaminophen Use During Pregnancy Featuring Mariah Leach, JD, MS
Amber and Mariah discuss how women with chronic illnesses cope with advice on medication use in pregnancy—especially in light of the confusion around acetaminophen. Mariah shares her experiences with rheumatoid arthritis and pregnancy, focusing on changes in medication safety data. They talk about the pressure, stigma, and lack of support for pregnant women, the need for nuanced guidance, and provide resources.
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How to Become an Effective Patient Advocate
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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How Patient Stories Change Perspectives and Influence Lawmakers Featuring Kelly E. Dwyer – About IBD Podcast Episode 186
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.
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This Is Why People With IBD Need Strong Communities
Living with a chronic illness like inflammatory bowel disease (IBD) is isolating. Not only are there stigmatizing physical symptoms, but there’s an emotional toll. It’s challenging for patients to find understanding and support in their everyday lives.
In episode 184 of About IBD, I sat down with Crohn’s patient and advocate Aaron Blocker to talk about the role of online community. Aaron shares his journey in building an online support group for people with IBD, including the successes and the frustrations.
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Community In IBD: How to Stop Being Isolated Featuring Aaron Blocker – About IBD Podcast Episode 184
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.
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How Storytelling Fosters Compassion for Kids with Chronic Illness – About IBD Podcast Episode 181
A children’s book leads to this conversation, which bridges the worlds of chronic illness, creativity, and connection. I talk with MB (Britt) Mooney, author of “The Mouse Who Couldn’t Eat Cheese,” a children’s book inspired by a young woman named Alex who lived with severe Crohn’s disease. MB, a science fiction and fantasy author, stepped outside his usual genre to create a story that helps kids and families understand invisible illnesses and the power of friendship. You’ll hear behind-the-scenes insight on MB’s creative process, the lessons learned from working with Alex’s family, and the message he hopes every reader takes away—whether they live with inflammatory bowel disease or not.
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Coping With the Emotional Impacts of IBD
After being diagnosed with ulcerative colitis, Victoria felt isolated and overwhelmed. She turned to social media to connect with the IBD community.
That led her to work with others in the IBD community to create #GetYourBellyOut. Their goal was to make some noise and get attention for Crohn’s disease and ulcerative colitis outside of the GI community.
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#GetYourBellyOut: Picturing Hope for IBD — About IBD Podcast Episode 175
Victoria, from the patient-led, charitable organization GetYourBellyOut, shares her journey with ulcerative colitis. She describes the unique role of patient advocacy and the importance of community support, as well as the innovative projects that GetYourBellyOut is undertaking to bridge the gap between patients and healthcare providers.
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