How Storytelling Fosters Compassion for Kids with Chronic Illness

Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds. One of the barriers to addressing disparities is money. It's an unfortunate fact that the healthcare system in the United States is intertwined with money. In some cases, access to care and other equity issues might be solved by putting some funding towards the problems. That's why I asked my guests a really broad question: If you received grant money, where would you allocate it in order to address disparities? You'll hear from Dr Aline Charabaty, Melodie Narain-Blackwell, Dr Cedric Pulliam, Dr Fasika Shimeles Teferra, and Brooke Abbott to find out what this panel says about where we should be focusing our efforts in combating healthcare disparities in the IBD space. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca. Theme music, mix, and sound design is by Cooney Studio.

8 Aug 202321min

Healthcare is political. That's why it's important to push legislators to ensure care is available and accessible to all patients, regardless of their socioeconomic status. Brooke Abbott, of the Crazy Creole Mommy Chronicles and co-founder of IBDMoms helps illustrate the aspects of public policy that are important in achieving equity in healthcare. In this discussion you'll learn how lack of access to educational opportunities affects the healthcare space, how some provisions in the Affordable Care Act help reduce disparities, and why access to technology is an important part of healthcare. Find Brooke Abbott on her blog, Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca. Theme music, mix, and sound design is by Cooney Studio.

1 Aug 202343min

Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds. IBD is still considered rare in some parts of the world, but incidence is increasing. Fasika Shimeles Teferra, MD of Ethiopia describes her journey to a diagnosis of Crohn’s disease. Being a medical doctor, she has been able to make connections in order to help other IBD patients in her country. Patients face stigma, less than optimal care, and a lack of educational resources for themselves and their friends and family members. Dr Teferra was helping patients as best she could but discovered she needed a bigger platform. She founded a nonprofit, Crohn’s and Colitis Ethiopia, in order to better support Ethiopian patients with IBD. Find Dr Teferra on LinkedIn and Twitter and Crohn’s and Colitis Ethiopia on Facebook and their web site. More about Dr Teferra and IBD in Ethiopia: Interview with Dr Teferra on Lights, Camera, Crohn's Inflammatory bowel disease: an emergent disease among Ethiopian Jews migrating to Israel Inflammatory bowel disease in Africa: what is the current state of knowledge? Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca. Theme music, mix, and sound design is by Cooney Studio.

25 Juli 202329min

Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds. What is it like to not have anyone on your medical team that looks like you or understands your concerns? The diversity of the human experience is often not reflected in the healthcare system. In fact, there's little research into some areas of IBD, including the experience of LGBTQIA+ patients. Dr Cedric Pulliam, Senior Public Health Advisor at the Centers for Disease Control and Prevention, had a long journey to a diagnosis of Crohn's disease, punctuated by less than helpful advice from specialists. His experiences as a public health advocate, a patient, and a gay male have brought him to be an open advocate for those in the LGBTQ community. Dr Pulliam has advice on how the IBD community can learn from other disease states in how to truly meet the needs of patients. Find Dr Pulliam on LinkedIn and Twitter. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca. Theme music, mix, and sound design is by Cooney Studio.

11 Juli 202340min

Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds. Nutrition is a major component of managing digestive disease. Yet people living with Crohn's disease, ulcerative colitis, or indeterminate colitis may not be offered access to help managing their diet. Dr Selvi Vasudevan, founder of Dr Selvi's Keys to Ease Crohn's, discusses her Crohn's disease journey and how it led her to pursue the role diet and nutrition play in wellness as well as the cultural influence on our food choices. A child of immigrants from southern India to the United States, she is discovering how best to integrate family life, her culture, and her needs as a person with IBD. Find Dr Selvi on Facebook, Instagram, Twitter, and on DrSelvi.com. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca. Theme music, mix, and sound design is by Cooney Studio.

4 Juli 202333min

Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds. Why do women of color encounter so many barriers when accessing care? Where are the spaces for black and brown patients to share their knowledge, experiences, and support around Crohn's disease, ulcerative colitis, and other immune-mediated and autoimmune conditions? Melodie Narain-Blackwell, founder of Color of Crohn's and Chronic Illness, discusses her Crohn's disease journey and how it led her to become a voice for the IBD community. She tells us why outreach to minority groups sometimes fails, how she approaches patient education, her ideas on giving patients improved access to care, and how motherhood affects her disease journey. Find Color of Crohn's and Chronic Illness at COCCI.org, Facebook, Twitter, and Instagram. Find Melodie Narain-Blackwell at Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca. Theme music, mix, and sound design is by Cooney Studio.

27 Juni 202335min

In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds who live with IBD. Why is there a lack of people of diverse backgrounds who live with Crohn's disease or ulcerative colitis represented in clinical trials? Why are there so many barriers for people of color in accessing IBD care? Dr Aline Charabaty, Director of the IBD Center at Johns Hopkins Sibley Memorial Hospital and founder of Monday Night IBD on Twitter discusses the scope of inequalities in research and access to care in IBD. What's more: she offers solutions that can be used to address disparities. Find Aline Charabaty, MD on Facebook, Twitter, Instagram, and at Monday Night IBD. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca. Theme music, mix, and sound design is by Cooney Studio.

20 Juni 202341min

Pregnancy while living with inflammatory bowel disease (IBD) feels scary. But thanks to the groundbreaking Pregnancy Inflammatory bowel disease And Neonatal Outcomes (PIANO) study, there is now so much more data and information to help moms and their doctors make decisions. Dr Mahadevan began the PIANO registry in 2007, which followed women and their babies through pregnancy and after. What was learned from this registry was how IBD medications, and especially biologics, affected pregnancy, birth, and infants. Learn how Dr Mahadevan has grown PIANO over the years, the most important findings so far, and how pregnant women can join the study and help the next generation of moms with IBD and their babies. Find the PIANO Study at: Twitter: @PIANOIBD Web: PIANOStudy.org   Find Uma Mahadevan, MD at: Twitter: @UmaMahadevanIBD LinkedIn: @uma-mahadevan-ibd Web: University of California San Francisco   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio LinkedIn: @macooney Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD136 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

6 Juni 202325min