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My Journey of Acceptance and Healing

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My name is Zehra and I am 20 years old. I began experiencing symptoms that were probably resulting from IBD as early as five years old. I was not officially diagnosed until I was 14. After multiple severe relapses, consisting of profuse blood loss and dramatic weight reduction, my colonoscopy/endoscopy revealed I have Crohn’s disease. Unfortunately, my diagnosis happened at a time of severe disease relapse, which impeded my education significantly. I took several years off during high school to cope with my disease and multiple life challenges, which merited the need for self-care. During this time away from school, I explored my passions further to give me a sense of purpose, productivity, and victory over IBD. After so much struggle, I am finally in my last year of high school, and I'll be graduating in June if all goes well!

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PAC Chat Recap – Surgery & IBD

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https://flic.kr/ps/3hiKuq

On January 24, the PAC hosted our first ever Twitter chat. We invited the whole ImproveCareNow community, as well as our Social Media followers to join us for an hour so we could chat about Surgery & IBD. In case you missed it, here are some event highlights.

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Design and IBD?

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When someone thinks about design, most likely this person associates it with the aesthetics of an object. This is not wrong because creating an aesthetically pleasing product, digital or physical, is part of the profession. But it is much more than the looks of a solution for an identified problem. Design has so much potential to strengthen and give power to a group of people and I am making it my mission to maximise this potential, rather than just focusing on the looks of a product. There are a lot of good examples of how ethnographic research, co-creating solutions with patients & experts, following trends, prototyping and iteration based on user testing can create fantastic product solutions. Because of that, I am exploring the benefit of design for paediatric IBD patients, who unfortunately will have a whole life of disease management ahead of them. Currently, I am working on my master thesis in Advanced Product Design at the Umeå Institute of Design in northern Sweden and hope to work together with you!

My name is Daan Hekking, I am 24 years old, born in The Netherlands and was diagnosed with Crohn’s disease when I was 18.

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Parents in Research – Updates from the PWG Research Subcommittee

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My name is Derek and my daughter, Caitlyn, was diagnosed with Crohn’s disease at age 9. At that time, I immersed myself in the medical literature and sought to build good connections with like-minded parents through organizations like the Crohn’s & Colitis Foundation and, ultimately, ImproveCareNow. Through ImproveCareNow, I have joined a community of patients, parents and scholars engaged in understanding, managing and treating pediatric IBD. This year, I was pleased to be offered the opportunity to engage at a deeper level with the ICN community, by serving as lead for the Parent Working Group Research Subcommittee for ImproveCareNow.

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I was afraid to talk about my health

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My name is Rosa. I'm 23 years old, and was diagnosed with ulcerative colitis when I was 11. I graduated from Lewis & Clark College in 2016 with a degree in Medical Sociology. I'd like to go back to school at some point, and get a degree in disability studies, social work/counseling, or public health (I still haven't decided which!) I'm hoping to find a job that allows me to use my own experiences with chronic illness to help others dealing with similar issues and frustrations!

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Surgery & IBD - a PAC Twitter Chat

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While surgery may not be a fit for all IBD patients, it’s certainly a topic to discuss. I invite you to join us on Twitter on Wednesday, January 24, 2018 @ 1PM EST as we @ICNPatients talk about surgery and IBD.

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Mental health is just as important as physical health

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My name is Andi and I’m a freshman at Indiana University-Bloomington where I study Biotechnology, Chemistry, Spanish and Pre-Med. I was diagnosed with Crohn's disease in April of 2008. I currently take Methotrexate, which has kept me in remission for about nine years now. A fun fact about me is that I collect snow globes.

One of my greatest struggles in dealing with a chronic illness, is the mental side effects that come along with it. I can be moody or withdrawn and I find it affects those around me.

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Research should benefit patients

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I'm Joshua – a 21-year-old Stanford senior. I was diagnosed with Crohn's in the 7th grade and have been, for the most part, in remission since then (I've been on Remicade pretty much continuously). Most people don't know that I can roll my stomach – I'm a pretty open book, so that's all I got!

Since I've only experienced Crohn's-related symptoms 2-3 times in my life, whenever I have any GI symptoms or problems, I always get anxious that "the Crohn's has come back." It can be mentally exhausting at times, but luckily school keeps me busy and distracted.

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PAC 2017 Year in Review

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As the Patient Advisory Council says hello to 2018, we want to take time to reflect on all we accomplished in 2017. From new members to new toolkits, retreats to a redesigned logo – we have so much to celebrate!

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