Tag Archives: awareness

The Need for Intersectional Research in IBD

In a recent episode of About IBD, I had the privilege of talking with Cass Condray, a passionate advocate and researcher. Cass, who not only works in IBD research but also lives with the condition, shared his insights into the unique challenges faced by the LGBTQIA+ community who live with IBD.

One of the issues highlighted in our conversation was lack of research. There’s little in the way of study looking at how IBD affects sexual and gender minorities, which influences healthcare outcomes and quality of life.

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Understanding Flare-Ups in Inflammatory Bowel Disease

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Finding the causes of the inflammatory bowel diseases (IBD, Crohn’s disease, ulcerative colitis, and indeterminate colitis) has been difficult for researchers to untangle. It’s thought that IBD may be a result of a genetic predisposition and an environmental trigger, with microbiome and immune system changes as a chaser. (Rudbaek)

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The Genetic, Environmental, Microbial (GEM) Project – About IBD Podcast Episode 152

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What is being done to help prevent inflammatory bowel disease (IBD) in the next generation? The Genetic, Environmental, Microbial (GEM) Project is a research study from Crohn’s and Colitis Canada (CCC) focused on finding possible causes for Crohn’s disease by following healthy people who are at a higher risk for developing the disease. To talk about GEM, Amber interviews CCC volunteer Chantel Wicks. Chantel is the chapter president for the Durham Region in Ontario and the Chair of their Gutsy Walk, which is a fundraiser and event that takes place every year in the first weekend of June. Learn more about how the GEM Project is uncovering important information on the development of IBD and how to get involved in CCC and The Gutsy Walk.

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The Sherman Prize: Awarding Excellence in IBD

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Inflammatory bowel disease (IBD) patients can sometimes feel as though there is not enough support and resources for our community. For a condition that is common and also on the rise across the world,[1,2] it seems counterintuitive that there’s not more acknowledgement of how difficult these diseases are to live with and to treat.

For patients and their families, knowing that clinicians and scientists are working towards developing tools and treatments that will help in managing these conditions can be validating and impactful. People who have devoted their careers to IBD aren’t doing it for recognition. But there is a way to honor their contributions.

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Colorectal Cancer Awareness Month With Dan “Dry Dock” Shockley – About IBD Podcast Episode 149

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Diagnosed with attenuated familial adenomatous polyposis (AFAP), retired Navy veteran Dan “Dry Dock” Shockley shares his remarkable journey of service, diagnosis, and advocacy. Following his diagnosis, Shockley became a passionate advocate for early detection and reducing the stigma associated with living with an ostomy. He emphasizes the importance of proactive medical care and maintaining a positive attitude in the face of adversity. Through his advocacy work and personal journey, Shockley serves as an inspiration, demonstrating resilience, determination, and a commitment to making a difference for others.

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Is Diarrhea Funny?

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A search of my computer shows that I’ve written on the topic of diarrhea several times already. It’s a recurring theme every few years, usually after a news event.

The latest circumstance, as I write this, is an incident that occurred on a flight between Atlanta and Barcelona in early September 2023. Reportedly, a passenger had diarrhea that was concerning enough to be considered a biohazard. According to CNN and other sources, the flight turned around after a few hours and went back to Atlanta. (CNN)

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Experiences Are Solitary but Learning Is Communal

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There’s one question that I’ve been asked many times, and it’s one that I also ask others when I conduct interviews:

“What advice would you give to people who are newly diagnosed with Crohn’s disease or ulcerative colitis?”

I see the importance of getting both new and veteran patients to give their experience with a new diagnosis of inflammatory bowel disease (IBD). It might be fair to say that most people, in hindsight, whether this is weeks or decades later, can point out where their journey could have been improved.

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Summer of Activism: Navigating Your First Day on the Hill Meeting

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Patient advocacy groups often take part in “Day on the Hill” events. This is when an organization sends a group of people to Washington DC to meet with the offices of federal representatives. I’ve attended several hill day events over the past several years with different patient advocacy groups. At this point, I’m ready to let you know some of my tips and tricks so that when you’re ready to get started and do this work, you’ll be prepared.

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About IBD Podcast Episode 49 – Summer of Activism: Attending Day on the Hill

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How does an IBD patient attend Day on the Hill events and meet with the offices of congressional representatives in Washington DC? What is it like to go to these events? In this episode I describe how I got involved in hill day meetings, why I do it, and what the process is like to attend. I also offer you my tips on how to make the best of the time spent in the capital in order to make the biggest impact on the people who can affect change in the lives of IBD patients.

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Summer of Activism: 10 Ways to Get Your Kids Involved in Advocacy

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We tend to think of politics as being for adults. But how do adults become engaged citizens who take part in their community? They start as children, learning from parents about the importance and benefit of volunteering, voting, and understanding the challenges and opportunities in their community. There’s so much that parents can do to raise children to be active community members. In addition, some of the many skills that are learned along the way, include public speaking, networking, teamwork, strategy, and communication. Continue reading →