ImproveCareNow Talking_about_ibd


IGNITE - My friend...IBD

What if your closest friend had a habit of interrupting your plans and not listening when you begged them to stop? You might might wish to end that friendship. But, as Mahalakshmi points out in her #IgniteTalk, which she shared at both our in-person and our virtual community conference this fall, when "friend" is really a metaphor for IBD there isn't really a choice. 

Be inspired by Mahalakshmi's #IgniteTalk 🔥 


IGNITE - IBD is a marathon AND a sprint

Inspiring, honest and motivational. Those were the words used to describe IBD parent, Ildiko's #IgniteTalk. In it she reminded us all of the critically important and unique perspective that parents and caregivers of young people with IBD bring to the discussion. She asked us to remember that while we collaborate on the big challenges that IBD presents, there are also small things we can do to make a difference right now (like watching our language). And she issued a call to action for us to work together to make truly meaningful progress in outcomes for kids with IBD and also to really believe that radical, transformative progress is possible.

Be inspired by Ildiko's #IgniteTalk 🔥


Episode 31 of the imPACt podcast - @BowelSounds Collaboration #WhatIWishYouKnew

Join me (Fionna) and my fellow PAC members, Christian and Shira for our conversation with the hosts of the NASPGHAN podcast, Bowel SoundsDr. Temara Hajjat and Dr. Jason Silverman. We discuss what we wish providers knew from the patient perspective and uncover what providers wish patients knew. 


Episode 30 of the imPACt podcast - High School, College, Grad School & IBD

Join Vanessa, Hannah and Fionna for their conversation about IBD during different stages of schooling. Between the three, they have lived experiences with both Crohn's disease and ulcerative colitis, with being diagnosed at different life stages (during early education and in high school) and with balancing high school, college and grad school with IBD.


Join Us - Fall 2022 *VIRTUAL* Community Conference

We are hosting a Fall 2022 Virtual Community Conference as a way for us to connect, share information and updates, and learn from each other. This event is online, and is free & open to all who want to attend. We are keeping it brief (90 minutes), conveniently timed (6:30-8pm ET/3:30-5pm PT) and flexible - making it easy for you to drop in for some or all of the event. Our content is all intentionally focused toward patients and caregivers living with IBD. So, please join us (and invite someone you care for to join us) for #ICNVCC on November 9 from 6:30-8pm ET/3:30-5pm PT. 


Episode 29 of the imPACt podcast - Why Storytelling Matters

“If you just sit and give folks a list of facts, they can debate those facts or try to refute them. They can't debate your story. Because it's your story." - Chris Keck on the imPACt Podcast 

Join Vanessa, Becky and Fionna for their conversation with Chris Keck from ImproveCareNow. We discuss storytelling - particularly personal narratives - and why stories matter.


Episode 28 of the imPACt podcast - IBS in IBD

IBS (irritable bowel syndrome) and IBD (inflammatory bowel disease) are different disorders that intersect sometimes. Join Shira and I (Maddie) as we share our experiences and talk with Carlo Di Lorenzo, MD about IBS, IBD, and the complex and fascinating interactions between the brain and the gut.


Episode 27 of the imPACt podcast - Mental Health and IBD Flares

Welcome to the second episode in a 3-podcast series we're doing in collaboration with the ICN SWAP group (SWAP stands for Social Workers & Psychologists). In this episode, you'll hear me (Ryleigh) and my fellow PAC member Avery talking with Lauren Potthoff, PhD - an IBD psychologist at Lurie Children's in Chicago - about mental health during IBD flares.


Episode 26 of the imPACt podcast - IBD and Medical Trauma

Join me (Autumn), Henry & Samantha for a conversation about medical trauma in IBD with ICN SWAP (Social Workers & Psychologists) group members Dr. Jennie David (licensed clinical pediatric IBD psychologist) and Dr. Alexandra Fuss. We are honored to have them join us to discuss this important topic.


Crohn's disease has ultimately, and endlessly, reminded me to nurture and love the body I have been given and led me to my passion for healthcare

I was diagnosed with Crohn's disease at six years old, a year after I started experiencing symptoms. I have now been managing this chronic illness for 16 years! In addition to being diagnosed young, I was living in the Netherlands at the time -- while I wasn't born here, all of my family is from here and Dutch was my first language.


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