As a public speaker, it can be challenging to embody positivity while talking about such difficult experiences. Leela struck this balance in her Ignite Talk at our Fall 2024 Community Conference; she led us into the darkest moments of her IBD story and then turned on the light. During her recovery from abdominal surgery, when the stress, fear, and pain was palpable and all she wanted to do was cry but couldn't because "if I did, my stomach would feel like lava," Leela's Mom never gave up on her or left her side. In a pivotal moment involving a 🐞 ladybug, Leela felt her Dad's words "This too shall pass..." spring into her mind. Those comforting words woke her up and she was hit with the realization that this was her defining moment; "a moment in your life that you look back on and it fills you with motivation to keep moving forward - a time in your life where you went...yeah, I did that!” 

Be inspired by Leela's #IgniteTalk 🔥

This study aims to characterize pediatric inflammatory bowel disease (IBD) patients who change diagnosis and describe the characteristics of that change.

Ignite Talks have become a tradition at ImproveCareNow Community Conferences. There is always so much enthusiasm for these brief and breathtaking personal narratives. And we continue to feel gratitude and awe for the improvers who speak from their hearts and share their real life experiences with pediatric IBD. We are grateful to Tomiyo for her story about caring for her daughter with severe IBD and the emotional toll it had on her. Speaking to a live audience was an act of real bravery for this introverted parent, and it represents a promise that Tomiyo kept to herself to be involved and to help other caregivers who might be suffering like she did. Tomiyo's ignite talk highlights the importance of support, community and advocacy for IBD caregivers and the power of stories to drive us all to create a better for future for those who need it most. 

Be inspired by Tomiyo's #IgniteTalk 🔥

Why was this study done?

Pediatric patients with inflammatory bowel disease (IBD), including Crohn’s Disease and ulcerative colitis, who take biologic medications (like infliximab and adalimumab) have decreased hospitalizations, surgery rates, and improved quality of life. However, biologic medicines are expensive. Biosimilars are similar biological therapies that are just as safe and effective as the original biologic medication, although they are often less expensive. There are currently two medications (infliximab/Remicade and adalimumab/Humira) used to treat IBD that have biosimilars available. Despite the cost savings, the utilization of biosimilars in the treatment of IBD has been low. The exact reasons why the utilization of biosimilars is low is not well known or well-studied.

The objective of this study was to evaluate pediatric gastroenterologists’ perspectives of biosimilars and to evaluate factors that impact pediatric gastroenterologists’ comfort level with prescribing biosimilars.

Imagine being diagnosed with a chronic illness in the midst of a global pandemic and lockdown. How does a young person develop resilience and thrive when facing incredible health challenges in isolation? How can they connect with people who understand, who can normalize IBD and offer support and validation about experiences that are still very stigmatized? Not only was Hannah able to develop resilience (on her own terms) and thrive (in the face of difficult surgeries and complications), she also found a community in ICN and the PAC and has grown into an incredible patient advocate. In her #ICNCC23S Ignite Talk, Hannah shares the story of her diagnosis, what resilience and community mean to her, how asking questions and getting to know patients can open the doors to more inclusive and whole-body care.

Be inspired by Hannah's #IgniteTalk 🔥

Maddie is joined by pediatric gastroenterologist David Suskind, MD and IBD-specialized dietitian Kim Braly, RD for a podcast about diet, nutrition, the gut microbiome, and how it all relates to Inflammatory Bowel Disease.

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.

Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.

A new research project aims to learn more about Sleep & Fatigue in Pediatric IBD.

Medications and biologic drugs are often a big part of managing IBD. Shira and Fionna were texting about their personal experiences with meds and biologics when they realized others in the IBD community might benefit from being able to listen in on their conversation. So, we decided to make a podcast episode about it!