ImproveCareNow Pac


I value my quality of life over my fear of an imperfect body

Hi! My name is Becca, and I’m a junior in the School of Nursing at UNC Chapel Hill. I was diagnosed with ulcerative colitis at age fifteen, and my life has been tremendously impacted by it. I hope to use all that I have learned from my own journey to change the lives of pediatric patients in my dream job as a nurse in an IBD center.


Learning to step back...

Hello! My name is Nour (means “light” in Arabic). I graduated from college, where I majored in Cognitive Science and minored in Communication. Since 2011, my diagnosis has changed a few times from Crohn’s disease to ulcerative colitis, and then back to Crohn’s disease. It has been quite a roller-coaster! There was nothing I wanted more than to be symptom free and respond positively to medication. It definitely required patience. To share one interesting fact about me…I have been graying since I was five years old! No, it did not all just suddenly happen in my 20’s! As for my age, I will give you a hint. I was born on the same day and year a historical event occurred in East and West Berlin.


My name is Quint

My name is Quint. I am 20 years old and attend college in Massachusetts. I was diagnosed with Crohn’s disease when I was 17, but had symptoms the year leading up to my diagnosis. A fun fact about me is that I love driving. In fact, I drove with my dad around the U.S. the summer before my first year of college. The trip was about 9000 miles and took three weeks. 


We call it the "My ICN Home" shirt.

Dear Improvers,

Hi, it’s Christian – co-chair of the PAC! I’m super excited to share that the PAC has selected a design for a new t-shirt, inspired by our work with ImproveCareNow. We call it the "My ICN Home" shirt. The concept for this shirt actually came from Spring 2018 Community Conference, and I can remember flying home after the conference, visualizing a design in my head. Here we are, one year later, and I finally brought that design to life and my fellow PAC members selected it as the design for our 2019 t-shirt! 


What I would have told my newly-diagnosed self

After suffering for months (including losing 20 pounds, requiring blood transfusions, missing junior prom because I was in the hospital…) I was told I have ulcerative colitis, a disease with no cure, and that I would need medication for life. Hearing this traumatizing news, I knew my life would be changed forever. I thought I would never recover, and the sickness would continue. I did not know anyone else that had IBD, and I felt alone.

Looking back on my sickest times, I can see very clearly that the one thing I wished I had was someone else with IBD who I could talk to...someone I could relate to and who could understand what it’s like.


Becoming a Responsible Young Adult

I’m Fionna and I am 18 years old. I am a freshman in college, thinking about studying engineering, but haven’t decided yet...so that may change! I was diagnosed with ulcerative colitis when I was five and primary sclerosing cholangitis (liver complication) when I was seven.

Last year I started fencing at school. I love it! Sabre is my favorite.


Igniting Energy for Learning Networks

Recently, I had the pleasure of sharing my story at a Learning Networks conference here in Atlanta. When you hear the term ‘learning networks’ just think ImproveCareNow, but for other chronic illness populations. This particular conference was unique because it brought four unique, budding learning networks together for the first time. The whole experience was extremely valuable, and it was amazing to see four learning networks that are at different stages, ranging from just starting out to those that have been doing it for a while. Sometimes in ImproveCareNow I find myself wishing change happened more quickly, but the experience helped remind me that we have come so far already. The purpose of my speech was to energize and inspire the participants, but I think it was me who came away inspired.

Several participants asked me to share my speech transcript so they could share with others after the conference ended. I thought maybe I could do one better and share my words with my entire ICN community. So, enjoy and I hope this reinvigorates you in our fight for better care and outcomes for young people with IBD.


From One Ostomate to Another, I Promise It Does Get Better

We have a problem. The problem is that people seem to be focused on the what of our ostomies and not on the why. Having an ostomy can drastically improve someone’s health; it can even save lives. For many of us ostomates, getting one is not a choice we have the liberty to make.


PAC 2018 Year in Review

It’s been a busy year for the Patient Advisory Council (PAC). Twenty-eighteen has seen the PAC evolve to be more dynamic and engaged than ever before. The progress and developments made in our group of 50+ patient members include substantial leadership changes and more toolkits than I can even remember. 


New Resource: PAC Accommodations Toolkit

As co-chair of the Patient Advisory Council (PAC) Advocacy task force, I am excited to announce our new Accommodations Toolkit! Becky and I (with lots of support from the entire PAC and ICN social workers) developed this toolkit as a resource to help patients, parents and providers better understand and navigate the accommodations process.


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