LOOP Blog

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

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. 

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.

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.

Adalimumab (ADA) is an important biologic drug used in the treatment of pediatric Crohn’s disease. In May at Digestive Disease Week 2016, a meeting of gastroenterologists from around the world, Dr. Keith Benkov presented research examining variation in the use of Adalimumab monotherapy and concomitant therapy with an immunomodulator in pediatric Crohn’s disease. The cross-sectional analysis was completed using data from the ImproveCareNow Registry (known as “ICN2”).

Click the poster image for a larger view

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.

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.

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.

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.

It’s a scene out of a typical relaxing Sunday afternoon: you’re sitting on the couch, watching your favorite TV program. There’s some occasional napping thrown in there, and it’s like you don’t have a care in the world. After the stress and busyness of school or work it makes for a restful and relaxing afternoon. To an outside observer, life during an IBD flare might look like exactly that.

The events of the last few weeks have had me reflecting on some things. And while I in no way have the writing skills of the great Sami and Jennie, I thought I would do my best to capture what I have been thinking about.

But a little bit of background for you all. I have been interning with ImproveCareNow through Cincinnati Children’s this summer and I also just experienced my first hospitalization in over 3 years. Throughout my internship, I was focusing on the motivation that drives people to be involved with a patient-focused group like ImproveCareNow.