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Taking Care to the Next Level - How Patients are Making a Difference

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:

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Know your iron status: Iron deficiency and IBD

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.

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Episode 4 of the imPACt podcast - Self-Advocacy & Transition

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. 

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PAC Moment: Stress, self-care & school

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:

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My niche will be to write about my experiences with different foods and UC

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. 

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Episode 3 of the imPACt Podcast

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.

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Shaping the way I view Crohn's

Hello! My name is Jennifer and I am a 16 year old high school student who also works part time at a pizza restaurant. I love meeting new people and enjoy engaging in activities outside of my comfort zone.

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