ImproveCareNow Patients_&_families


This is Why I ImproveCareNow

Have you ever been so annoyed by people you just want either to slap them or crawl under a rock and hide from them? It could be because they don’t know when to stop talking, or they constantly complain about such petty things. Sometimes you find yourself wondering how the heck they got this way! I have been mulling this over a lot lately because, no matter how annoying people can be, I also know that each individual was made unique for a specific purpose. Hear me out…

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PAC Welcomes Six New Patient Advocates

Let's give a warm welcome to - and get to know - six incredible new PAC members & patient advocates. Christian, Emma, Hindy, Julia, Natalie & Marisa are imPACting the lives of kids with Crohn's disease and ulcerative colitis, by raising awareness about the realities of life with Inflammatory Bowel Disease (IBD) and building connections and tools to support each other and all young patients with IBD. They are also using their voices and experiences to actively represent 26,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.


How I joined the PAC and ImproveCareNow

I spent many years thinking I was the only kid with Crohn’s Disease in my area. 

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Keri's Story

Two years ago, in the summer of 2014, my once vibrant active little boy, Parker was very ill. Losing weight before our eyes. Every day, he was getting worse and we were in and out of the pediatrician's office and emergency room, until finally, the on call pediatrician suspected that he had Crohn's. He sent us to the Children's Hospital where we were introduced to the Pediatric GI and Surgery team at The University of Vermont. Two days later Parker had an Endoscopy and Colonoscopy, and we were given the diagnosis. 

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Just ask, don't stare

It is human nature to want to learn and question the world around us. It is natural for us to seek innovation, invent new things and express new theories. This is how we improve and how we have achieved the advances we have today. Nothing is wrong with this innate desire to learn and be curious, except when you’re the one that’s being questioned and or are the object of someone’s curiosity.

Until recently, I’ve never thought of what it would feel like to be under the microscope of society’s judgment. After all, I was just a “normal” teenager residing in a “normal” city, living a “normal” life. I was attending college, spending time with my friends, and trying to keep up with the ever changing social trends. However, a Crohn’s diagnosis can really change this so-called “normal” lifestyle, especially when it is paired with a seven week hospital stay, two major surgeries, TPN, a PICC line, multiple JP drains and a much more all within a six month time period.


Deb's Story

I was diagnosed with Crohn’s in 1984. Very little was known about IBD. Hospitals were isolated...no one shared information. Now over 30 years later....I never thought I would be a part of a collaborative network that's main goal is to share information and data. When our son was diagnosed with Crohn's disease....I felt like it was time to step up and have a voice.

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PAC Summer 2016 Recap

PAC co-chairs, Bianca and Alex, are on the blog today to recap some of the amazing things this group of patient advocates has accomplished this summer. The PAC was created in 2011 with the intent to bring IBD patient advocates together to change IBD care for and with the ImproveCareNow Network. Over the years the PAC has evolved and grown and we've highlighted this in our new timeline. This summer the PAC made strides towards becoming a bigger, more engaged and effective council and we're excited to share how we're doing it and what it means for the future.

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Guitar Chant

Most people have a connection with music. Music can calm us:  think about the lullabies we sing to our children. It can excite us: think of the huge crowds that jump and cheer at concerts. And most certainly music can cause us to be nostalgic: think about how often we hear a song and think, "wow that brings back memories!" For those who play and create music it can be an emotional outlet. Music connects.

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Music has always been an integral part of our family. Olivia plays the flute, sings and tap dances. Dominic plays the bass guitar and sings. And Jerome has made a living at being a musician, both as director of Liturgical music at Saint Michael's College and with various Jazz ensembles in the Burlington, Vermont area.  My name is Claire and even though I don't play a musical instrument, I've dabbled in singing in our church choir and love to listen to live music, especially if the musicians are my husband or kids!  

To many, a connection between Crohn’s disease (IBD), ImproveCareNow and music may seem unusual. To us it’s natural. We would like to share with you the story of how IBD has impacted our family and how it lead us to become passionately involved with ImproveCareNow. And, of course, how music is an integral part of our journey.


PCORnet shares new video about ImproveCareNow

A new video featuring Peter Margolis, MD, PhD highlights how ImproveCareNow's partnership with PCORnet is enabling the network to design and deliver better care for and with patients with Crohn’s disease and ulcerative colitis, and how it is accelerating the pace of research that will answer important questions about these diseases.

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Not Sorry

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As a patient with a chronic illness, I have become well-versed at shedding my humanity and emotions and leaving them outside the clinic room, like taking off my shoes when coming home. We are made to believe, through experience and myth, that doctors are only interested in data. I am so practiced in this belief – or perhaps in that fear – that I can recite my diagnostic and treatment history in full, like rattling off a monologue with the medicalized Latin words becoming normalized. 


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