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 🔥 

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.

LOOP is an important venue for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, grow our confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2021, 70 stories have been shared #InTheLOOP. Patients, clinicians, parents, dietitians, researchers, and staff & leaders from across the ICN Community have written about IBD from their unique perspectives. They have covered topics ranging from support and advocacy to the importance of sharing openly and talking about IBD, from research and innovative projects to personal struggles, triumphs and hopes for the future.

Without further ado, here are the stories you read the most in 2021!

In preparation for presenting a breakout session about Fatigue, Sleep, and IBD at the upcoming Live Online Community Conference (LOCC), Nour and I (Maha) have shared our own personal experiences with and perspectives on IBD-related fatigue.

Join Maddie, Fionna & Maha as they build on a discussion we stated in Episode 2 of the podcast about IBD, Body Image and Relationships with Food. 

It was definitely a fascinating experience making this podcast episode where my fellow PAC member, Maha and I interviewed Dr. Jennie David. I especially enjoyed learning more about her profession and remember thinking that I didn’t even know IBD Psychology was its own subfield.

Mahalakshmi (Maha) Parakala is an active member of the Patient Advisory Council and currently serves a co-leader of their recruitment taskforce. She is a LOOP contributor, has presented during ICN Community Conferences, has co-developed IBD resources, and recently co-hosted an episode of the new imPACt podcast. At our Spring Live Online Community Conference, Maha shared her story about discovering patient advocacy and the role it has played in her life during our Engagement Plenary Better Together: Growing our CIRCLE Community to Take Care to the Next Level.

Please enjoy Maha's presentation, which we have shared both as a video and in transcript form, below:

Hi, I’m Maha, one of the PAC members you’ll hear talking about IBD in the second episode of our imPACt podcast! 

High school can be one of the most interesting times of your life. It’s fast-paced and you are faced with new challenges, experiences, subjects and adventures! High school is a challenge on its own and having IBD makes it even more difficult, especially because of its unpredictability. Going through one of the worst flares of my life during high school, I missed tons of school, and sometimes even when I was present, my body was so tired that I could not pay attention well. It was around this time that my school nurse told me it would be a good idea to get a 504 plan.

Hello! My name is Mahalakshmi (Maha for short!), and I am 18 years old. I have Crohn's disease, which was diagnosed two and a half years ago, but I've definitely had it way longer than that. I am attending college in California in the fall as a biology major and I'm excited for what the future holds! My hobbies include singing, acting, spending time with friends and family, and playing board games. One interesting thing about me is that I love languages. I've been bilingual since I was a child and started learning another language in high school that I hope to stick with in the future!