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PAC Moment: Experience with IBD

From diagnosis, to symptoms, to treatments, to (hopefully) remission - every person living with IBD has a unique experience with it. This is Rohit's:

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Going with the Flow: Observations from an IBD Patient and Employee in Healthcare

On New Year’s Eve, my family has a tradition of writing our New Year’s resolutions on pieces of paper and then sharing them with each other amidst chuckles and teases. However, last year, we decided to do something a little different. “Let’s not choose a resolution,” we said. “And just go with the flow.” That concept could not have been more fitting or appropriate for 2020.

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I was ready for boot camp when I got sick

My name is Madeline, and I am 18 years old. I currently attend technical community college but am transferring to a university in Virginia the fall of 2021. While in school I babysit/nanny part time. I was diagnosed with Crohn's disease earlier this year and I am excited to join the PAC. One thing most people don't know about me is that I love to sing.

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Introducing the Research Change Package: Improving IBD Research Together

Pediatric clinical trials face many barriers. They are too slow, too expensive and are often disconnected with the needs of the children and families they are supposed to help.

The Research Trailblazers – an ICN Learning Lab focused on improving pediatric clinical research – identified issues and barriers associated with participating in research studies and began to test and share strategies and best practices to close gaps related to successful trial enrollment, accelerating the pace of trial start-up, and developing more efficient processes across all phases of a research study.

A major accomplishment of this work is the information, knowledge and know-how collected in their Research Change Package - A Guide to Improving Your Research Journey.

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Connecting thousands of IBD patients and families

My brother was diagnosed with ulcerative colitis when he was in high school. This was before ImproveCareNow and he had almost no access to resources or connections. He felt alone and I felt paralyzed by my inability to help him. Today, it’s my job to think about the thousands of patients and families living with IBD every day, and how to connect them with each other and the information and resources they need.

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Top Ten LOOP posts of 2020

So far, in 2020, 50 stories have been shared #InTheLOOP. Thirty-four community members have written about IBD from their perspectives as patients, parents, researchers, clinicians, improvers and friends. They have covered topics ranging from COVID-19 and telehealth, to IBD research and innovation projects, to their struggles, triumphs and hopes for the future. 

LOOP continues to make an impact in the IBD community, as a place where people can share their experiences and perspectives, to help others understand the realities of life with Crohn's disease and ulcerative colitis more clearly, and to keep us all #TalkingAboutIBD. Without further ado, here are the stories you read the most in 2020!

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To cope with Crohn's disease, I choreograph South Asian dances.

My name is Rhea - I'm 17 years old and currently a senior in high school. I was diagnosed with Crohn's disease when I was 16 and will be starting Humira soon. One interesting thing about me is that I absolutely love children. I want to study pediatrics in the future!

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Dealing with COVID isolation as a high risk patient

 

As a high-risk graduate student who's been remote since March, I'm no stranger to the COVID isolation fatigue that many of us have been experiencing. It’s been a challenge to work, attend classes, take care of my health, and balance daily life without the usual in-person interactions I’m used to. The days can feel like a blur when we do everything from home - setting boundaries and creating some semblance of ‘normalcy’ has been tricky, to say the least.

A few of the things I’ve noticed help me cope right now:

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Engaging our IBD Community in the Time of COVID-19

In these turbulent times, with the ever-changing landscape of COVID-19 unfolding around us, the IBD team at Stanford Children’s Health has continued to prioritize community engagement; making the shift to offering virtual events and interactions that have provided their patients and families with uninterrupted clinical care, reliable sources of IBD-related information, and the ability to stay connected, ask questions and develop valuable coping skills to help navigate this unpredictable time successfully.

Their community engagement work was previously shared during our Fall Live Online Community Conference and will be highlighted again during our December 2 Virtual Community Conference (RSVP to join). Alison Kotzen RN, MSN, C-PNP, wrote the following about her team’s engagement efforts during the time of COVID-19.

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It feels like we've really come full circle

Something that I don’t think a lot of people know is that I recruited Catalina Berenblum (Cat) to join the Patient Advisory Council (PAC), years ago. And now that she’s on-boarded me as the PAC's new Co-Chair, it feels like we’ve really come full circle. If I had known then, what I know now, it would have been an interesting sight to see: a high school freshman leading an orientation call to onboard a future PAC Co-Chair and eventual med student. Obviously, I didn’t know that Cat would become either of those things when I first picked up the phone, but I did expect great things from her right away. From our first conversation, I was sure Cat was going to do something amazing: she became an instant role model to me. That awe I felt was well-founded.

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