ImproveCareNow Ibd


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.


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!


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:


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.


Pediatric IBD Foundation, ImproveCareNow, C-Path to Establish the Children’s Registry for the Advancement of Therapeutics

The Pediatric IBD Foundation, ImproveCareNow, and the Critical Path Institute (C-Path) are proud to announce a collaboration establishing the Children’s Registry for the Advancement of Therapeutics (CREATE™). CREATE™ is a drug-agnostic safety registry designed to support the completion of global post-marketing safety requirements, as well as collect safety information on all therapies used in pediatric IBD patients.


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.


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!


IGNITE – It starts with us.

Christian is co-chair of the Patient Advisory Council and a young black man living with Crohn's disease. He delivered a powerful #IgniteTalk at our Fall 2020 Live Online Community Conference. Read a written version of Christian’s Ignite Talk below:


It's OK for IBD to take up space in my life

My name is Shira and I'm currently a junior in high school. I was diagnosed with ulcerative colitis in the fall of 2018 but I am being reevaluated for Crohn's disease at the moment. Something interesting about me is that my mom and a few other family members of mine also have IBD!


With IBD, I’ve gained a lot of empathy and perspective and learned a lot about privilege

My name is Seth. I am 17 years old and a rising high school senior.  I was diagnosed with Crohn’s disease in sixth grade. I had a relatively typical path to my diagnosis. After a few years of worsening symptoms (stomach pain, constipation, and vomiting), I went into the hospital, where I had a gastric emptying scan and upper endoscopy, and then labs, a CT Enterography, and finally a colonoscopy. After a few weeks on Prednisone, I started IV Remicade, which I have been on ever since. Outside of Crohn’s, I play trombone and tennis. I’m also very involved in politics, and I was recently an intern for two congressional candidates in Ohio.


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