ImproveCareNow Patients


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.


Pling - the anatomy of a health education application

Last November I wrote about a personalised health literacy application, which I developed as part of my master in Advanced Product Design, for children who recently have been diagnosed with a form of IBD. In this previous article, I explained why we should improve our health education for this target group and what the benefits could be if children become more interested in educating themselves independently about their newly diagnosed disease. This article will dive into the actual health education application, which is called Pling.


My story with ulcerative colitis

I stumbled upon ImproveCareNow (ICN) by chance. A predecessor to the network, the C3N Project, had been mentioned in passing during assigned reading for one of my university courses. Naturally, as someone with ulcerative colitis (UC) I was intrigued. Though at the time I was busy with essays, a dissertation and job applications so C3N fell to the back of my mind.  


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.


What We Learned at the Fall Community Conference, and What We're Doing Now

Thanks to the generosity of the ImproveCareNow community, and the hard work and dedication of our parent and patient partners, 30 members of the Parent Working Group and Patient Advisory Council joined us at the Fall 2018 Community Conference in Chicago. It’s been two months since we returned to our respective communities, and some parent and patient partners wanted to share their reflections on what they learned while at the conference and how they are using this at their local center to improve care.


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