Derek Mari of Crohnie: It's Not Impossible
About IBD
03/23/21
•30m
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Have you ever seen a person who lives with inflammatory bowel disease (IBD) in a movie or TV show? If so: was the depiction positive or negative?
My guest is actor, writer, and filmmaker Derek Mari. Derek lives with Crohn's disease and his IBD journey inspired him to create a story that explores the way people cope with living with a chronic illness. He has already filmed a short film, entitled "Crohnie," which was positively received at several film festivals (before the pandemic shut everything down).
Derek's next project is a full-length feature film with a main character who lives with Crohn's disease. Loosely autobiographical, it will examine the journey to acceptance of life with a chronic illness, and show how that life can be full and filled with success. Learn more about Derek and his Crohn's story, as well as how you can get involved in the crowdfunding program to get this film made.
Find Crohnie Movie on Vimeo, Facebook, Twitter, and Instagram.
Find Derek Mari on Vimeo, Twitter, and Instagram.
Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.
Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.
Previous Episode
Fully Vaccinated Against COVID-19
March 8, 2021
•20m
Telling your Crohn's disease or ulcerative colitis story is powerful. It can be freeing but it can also come with some unexpected side effects.
Welcome back Rosanne Mottola, who originally intended to talk over receiving her second dose of the Pfizer BioNtech COVID-19 vaccine. She told her ulcerative colitis story and about receiving her first dose on Episode 87, "COVID-19 Vaccination With UC Patient Rosanne Mottola." She gives her experience on her second dose, how it affected her, and what her family's plans are now that she's vaccinated.
Additionally, Rosanne had another part of her journey that she wanted to share. She listened to her first About IBD episode (something a lot of guests don't actually do), as did her family. Reflecting on her ulcerative colitis journey brought things back in a fresh way. She tells me how revisiting some parts of her life in this way was both troubling and healing. It's an important part of the disease journey, especially for those who tell their story publicly, that doesn't often get discussed.
Concepts discussed on this episode:
- Clostridium Difficile Infection With Inflammatory Bowel Disease
- Dependent Coverage for Young Adults
- CDC: COVID Vaccine Doses Can Be Spaced Up to 6 Weeks Apart
- You Got Your COVID-19 Vaccine. Now What?
- CDC: Fully Vaccinated People Don't Need to Quarantine After COVID-19 Exposure
- Yes, Social Distancing Does Lower Your Chance of Contracting COVID-19
- Here's Why Your Symptoms May Be Worse After Your Second COVID-19 Shot
- 5 Ways To Prepare for Your COVID-19 Vaccination
Find Rosanne Mottola on Facebook, Twitter, and Instagram.
Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.
Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.
Next Episode
Healthcare Disparities in IBD
April 5, 2021
•1m
Hey, it's Amber. I want to tell you about my limited podcast series, Healthcare Disparities in IBD.
IBD used to be thought of as a Western disease. Something that happened in developed countries like the United States, Canada, the UK, and Australia. IBD was also thought to mainly affect White people and people of Jewish heritage. However, these demographics are changing, and IBD is now considered a global disease.[1]
A harmful and pervasive misconception is that IBD does not affect people of various ethnic and cultural backgrounds. Minority patients are sometimes told that they can't have an IBD because they are of African, Latinx, Native American, or Asian descent. This leads to a delay in diagnosis and care. In the setting of IBD, which is difficult to treat, this can lead to significant complications that negatively affect every aspect of a person's life.
In this limited series, we explore the ways in which the healthcare system is underserving minority and LGBTQ patients who live with an IBD. We cover the spectrum of this issue including the lack of research in minority populations, how cultural ideas around nutrition affects patients, how patients of color can be better supported, and how legislation can play a role.
As a long-term IBD patient myself, it's my goal to help physicians, industry, and legislators understand how inequalities affect the IBD community and what they should be doing to improve patient care.
Subscribe to Healthcare Disparities in IBD wherever you listen to podcasts.
[1]Molodecky NA, Soon IS, Rabi DM, et al. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology. 2012;142:46-e30. doi:10.1053/j.gastro.2011.10.001
Credits:
Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca.
Theme music, mix, and sound design is by Cooney Studio.
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