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Ulcerative colitis helped me discover my love of medicine

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Hello! My name is Taylor. I'm 22 years old and am secretly a Harry Potter fan (but shhhhh, I don’t want anyone to know!) I go to the University of Dubuque in Dubuque, Iowa. I'll graduate with my Bachelors of Science in May 2018. I am studying Human Health Science with the hope of being accepted into a Physician Assistant Graduate Program! I love medicine and would love to help others in any way I can.

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To Scarlet

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This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.

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The effect Crohn’s has had on my social life

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Hi, I'm Ceilidh (pronounced KAY-lee). I'm 15 years old and attend school at Mount Mansfield Union High School. I was diagnosed with Crohn’s disease in August of 2016. One thing most people don't know about me is that other than Crohn’s, I used to have a decently large strawberry hemangioma (basically a collection of fat and tissue). It was harmless, but it made me bite my lip a lot, so I had it removed when I was nine.

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This is the story of our lives as IBD patients

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Note: As a patient advocate, I wrote this article to raise awareness (not to make anyone feel badly). So please read it with an open mind and I hope you enjoy!

Living with IBD is very challenging. It’s hard work managing a chronic condition 24/7/365 – but somehow, we do it! We never give up, because we are stronger than IBD.

I believe that all my fellow IBD friends will agree with me on this list of concerns that we face:

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Project WOW 2.0

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It is difficult to understand what it’s like to live with an ostomy, or counsel someone on what to expect, if you’ve never had one yourself. With this challenge in mind my son Tyler and I created Project WOW (Wear an Ostomy for the Weekend) and offered it to attendees at the Fall 2015 ImproveCareNow Community Conference, with the goal of helping people gain some perspective by “walking in patients’ shoes” for the weekend. Recently, at the Spring 2017 Community Conference, we offered Project WOW again, with a few new twists.

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Crohn’s is hard to accept

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My name is Sydney, and I'm 17 years old. I go to St. Pius X Catholic High School in Atlanta, Georgia. I was diagnosed with Crohn's disease just this March. I am a triplet, with two triplet sisters, and I also have a younger brother.

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Working Together to ImproveCareNow: An Example of Research Co-Production

In ImproveCareNow there is a saying (there are many, actually) that goes: “we’re building the bike as we’re riding it.” This feels especially true with research co-production because as our team has been working to create the infrastructure, tools and support necessary for research co—production to happen in ImproveCareNow, we’re aware that it’s actually already happening.

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4 Things I Learned as a High School Student with Crohn’s Disease

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Almost a month ago, my life as a high school student came to an end - no more waking up at 6am everyday, no more school dances, no more crowded hallways, and no more rules that as a person with Crohn’s disease were really hard to follow. Rules like “ask before you leave to use the restroom,” “no water bottles in class,” and “no food in the classroom,” all came to an end.

Rules aside, what did high school teach me, besides how to solve overly-complicated matrices and what taxes are?

I learned...

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Join us on May 17 for our Virtual Community Conference

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Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our mission to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on May 17 between 4 and 8pm ET for our Spring 2017 Virtual Community Conference. Read more to see the agenda for this event. 

RSVP now and join our Spring 2017 Virtual Community Conference

 

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Staying Connected After the Community Conference

Dear Friends,

It’s fair to say that we’re still a bit speechless thinking about the impact of the presence, participation, and indeed leadership of so many people, including parents, patients, clinicians, researchers and improvers at our Community Conference. Over 300 people took time away from family, work, and day-to-day life, and dove right in. Together we learned, we taught, and most of all, we inspired each other all to keep doing better. Thank you from the bottom of our hearts for being a part of this community and helping us celebrate our first decade!

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