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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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Grateful to be "better together" with all of you!

Fellow Improvers,

As we enter the month of November, a month traditionally reserved for family gatherings and gratitude, I am reflecting on the start of my ImproveCareNow journey. Five months into this role, there are days I feel like I have been a part of our community forever and days when I feel like I will never learn enough about the network’s history and inner workings. What remains constant, is my commitment to and excitement about the work we are doing together and the passion with which we do it.

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Learning Together: Resuming In-Person IBD Care in the Time of COVID-19

Active improvement work recently wrapped up for a sprint Learning Lab focused on COVID-19. This work brought together six ImproveCareNow care centers (Children's Hospital and Medical Center Omaha, Duke Children's Hospital and Health Center, Levine Children's Hospital, MassGeneral Hospital for Children, Nationwide Children's Hospital & University of New Mexico Children's Hospital) to learn together and improve approaches to resuming in-person IBD clinics, safely and effectively, after closing temporarily due to COVID-19.

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Crohn’s made it hard to participate in simple things

My name is Robbie. I’m 18 and a college student. I was 15 when diagnosed with Crohn's disease; luckily I am in remission now. An interesting fact that people don't know about me is that I captained my school's Trivia team and we went on TV for competitions!

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