LOOP Blog

Fionna is an active member of the Patient Advisory Council, and is currently co-leading their communications taskforce. In this role, she is collaborating with other PAC members and ImproveCareNow to bring the stories and voices of the PAC to even more people in new and exciting ways. This spring she helped to launch the imPACt podcast, which is a new way to connect with and listen to young people talking about life with IBD. It is through the PAC that Fionna was recently able to tap into support, understanding and validation as she coped with a UC flare. She credits the PAC and this experience with helping her shift her mindset about healthy resilience, exploring the benefits of opening up and being vulnerable, and learning how to be flexible and give herself grace during tough times.

Be inspired by Fionna's #IgniteTalk 🔥

I'm Vanessa - one of the PAC communications team leads - I am currently a HS junior and on tennis team. I've had to learn how to talk to my teachers, coach, teammates and friends about Crohn's and tell them when I feel sick or have an infusion. Being open has helped me build trusting relationships with them. Managing IBD, school and sports is definitely a challenge, but having a strong support system and being able to communicate with them openly has made it a lot easier to succeed. I'll be talking more about it on the podcast today - join me!

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:

Anemia is common in IBD and iron deficiency is the leading cause. Studies show up to 95% of individuals newly diagnosed with IBD are iron deficient. Learn more about iron deficiency and IBD from the ICN Registered Dietitian group, including common symptoms, as well as what to expect with testing, treatment, management and prevention.

Hello! My name is Henry, and I am a 14 year old freshman in high school. I was diagnosed with Crohn’s disease when I was nine. Most people don't know  that I was born in NYC but moved to Charlotte, NC when I was six months old.

At the Spring ICN Community Conference, PAC members led breakout sessions on the important topics of self-advocacy and pediatric-to-adult transition. In this episode of the imPACt podcast we continue the conversation about these topics with special guest, and PAC alumna, Sami Kennedy. 

PAC members weigh in on how they like to manage stress and take care of themselves leading up to school exams or the end of a semester. Here is what they said:

My name is Nikhil and I am 17 years old. I am currently a junior in high school, and I was diagnosed with ulcerative colitis in September 2016, when I was 12. One thing most of my friends don't know about me is that I absolutely love going to school. There is just something about learning new information that makes me feel great. 

Below is a description of the episode by PAC Member, Nour. 

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I had the pleasure of presenting at the Spring 2021 Live Online Community Conference last week on the topic of “Recovering from Flares”. Myself and other PAC members discussed things like: what a flare looks like, how a patient can anticipate a flare and what steps they can take in communicating with their providers and family to avoid serious health repercussions. Our goal was to really emphasize proactivity and empower patients to take charge of their health. 

I'm really excited about this topic and have shared a bit more about it below, including how you can listen as we continue the conversation in Episode 3 of the imPACt podcast this Friday.