ImproveCareNow Patients


The story of "Up and Adam" - my picture book for kids with IBD

Hi, my name is Adam, and I am a 24-year-old medical student. I was diagnosed with ulcerative colitis when I was two years old and had my colon removed when I was 12. Recently, I published a children's picture book, Up and Adam, about my childhood experiences facing IBD with a positive attitude. This is the story of how and why I created Up and Adam and how I hope my book can help young kids by offering a tangible connection to someone who knows what they're going through and can remind them they are not alone. 


PAC Moment - Patient Perspectives in IBD Care

The Patient Advisory Council (PAC) is continuously focused on advocating for IBD patients and promoting the patient perspective in IBD care. PAC Projects (like toolkits and podcasts) are one way we do this. Here are some of the things we've been working on lately:


Episode 24 of the imPACt podcast - Drs. Sunseri & Crawford talk Exclusive Enteral Nutrition with the PAC

Hello everyone - it's Fionna from the Patient Advisory Council communications team. I'm excited to share that after a bit of a break the PAC is back with an exciting new episode of our imPACt podcast where we chat about a commonly used, but often not discussed, IBD nutritional therapy.


Crohn’s disease taught me not to be so quick to blame myself without knowing the whole story!

Hi! My name is Sanjana and I was recently diagnosed with Crohn’s disease in April 2021. A fun fact about me is that I love doing art!


Top 4 Things to Know When You're Diagnosed with IBD

When I was diagnosed with ulcerative colitis at 14 years old, I was shocked. I was lucky enough to already have some familiarity with the disease, but I never thought it would happen to me. I had every single textbook symptom, but I still felt so numb and so distant from the new reality I had to face. This isn’t an uncommon feeling, and it can be really hard to know where to start. IBD is a complex disease, so here are some things I found helpful while learning to navigate those first few months after my diagnosis.


I was given this life because I’m strong enough to live it!

My name is Autumn; I am 20 years old and I am currently in college. I am from Ohio and was diagnosed with Crohn’s disease in April of 2008, when I was just six years old. I have had Crohn’s for 14 years this month (April 2022). Something most people don’t know about me is that I absolutely love to travel. Long road trips (at night is my favorite!) and going and seeing places I have never been to before is something I really love and enjoy… I see a lot of adventures in my future! A couple places I would love to visit one day would be Canada and Disney World. OH...I really want to fly on a plane!


I loved having support from friends and family when I felt vulnerable and alone

Hey everyone, my name is Benjamin. I had symptoms for several months, but I was finally diagnosed with Crohn's when I was 11. After trying several medications and treatments, I am now on Remicade, and have been symptom free for five years. I love to play sports and hang out with my friends. One fact people may not know about me is that I was born in Switzerland.


Sometimes we're tested not only to show our weaknesses but to discover our strengths

Hi! My name is Fizza, and I am 17 years old. I was diagnosed in March 2021 with Crohn’s disease. One interesting thing people don’t know about me is that I love to do makeup. It’s like therapy to me.


Navigating the Chronic Disease Journey as a Young Black Patient - Christian Lawson's 2021 Stockman Lecture

Christian Lawson is a former co-chair of the Patient Advisory Council (PAC) and a current improver and member of the ICN Diversity, Equity and Inclusion Committee. Christian was nominated by fellow improver, Lisa Pitch, and was awarded the James A. Stockman Lectureship through The American Board of Pediatrics (ABP) Foundation. On October 10, 2021, Christian spoke during the American Academy of Pediatrics National Conference and Exhibition, sharing his experiences as a young Black patient navigating the chronic illness health care system.


Episode 23 of the imPACt podcast - Happy One Year!

The PAC released episode 1 of our imPACt podcast on February 28, 2021. Join me (Vanessa) and my communications co-chair, Fionna as we celebrate one year of imPACt and chat about some of our favorite parts of podcasting, share which episodes we like the most, and talk about where the podcast may be headed in the future.


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