Posted by Nicole Steeves on November 05, 2019
Hello Fellow Improvers! I am Nicole and I have been part of the ICN Community for four years. During this time, I’ve been grateful to enjoy several Community Conferences and have been an active participant in improving care both at the national level with the ICN Parent Working Group (PWG) and locally as the Co-Lead of the Parent/Patient Advisory Team (PPAT) at my care center in Massachusetts. I'm pleased to introduce my family to you!
My husband, Michael and I attended our first Community Conference together to understand more about ImproveCareNow and how it helps our family. We also used it as an excuse to celebrate our 15th wedding anniversary in Chicago!
Since that time, our involvement with ICN has been a family affair. We all help our local center shape its community engagement. Our daughter, Rebecca has met other like-minded siblings and can be found creating Quizlets for patient trivia night, or baking recipes to share at our events. IBD siblings can often feel left out and this community has allowed her to forge friendships with other siblings, while improving care for others.
Our son AJ was diagnosed before kindergarten at age five. He's now 12 and really can’t remember a time BC (Before Crohn’s). He has had the regular roller coaster of medical issues, but attacks each one with a fairly good attitude (although, he isn't a teenager yet...)
AJ could give you a laundry list of medical CONS to having Crohn’s but thinks the best PRO of having IBD is going to CAMP OASIS each summer! He also looks forward to when he is old enough to be able to join other patients and participate at Community Conferences!
ICN has opened my eyes, and the eyes of my family, to the many challenges of IBD and chronic illness, but it has also given us tools and friendships to make those challenges a little bit easier.
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