ImproveCareNow School


PAC Moment: Stress, self-care & school

PAC members weigh in on how they like to manage stress and take care of themselves leading up to school exams or the end of a semester. Here is what they said:


A 504 plan helps school staff understand how they can support you

High school can be one of the most interesting times of your life. It’s fast-paced and you are faced with new challenges, experiences, subjects and adventures! High school is a challenge on its own and having IBD makes it even more difficult, especially because of its unpredictability. Going through one of the worst flares of my life during high school, I missed tons of school, and sometimes even when I was present, my body was so tired that I could not pay attention well. It was around this time that my school nurse told me it would be a good idea to get a 504 plan.


Science is the Voice of Reason

Hi, my name is Rishi, and I’m a 19-year-old Medical Sciences undergrad as well as a Student Researcher at a Children’s hospital. I was diagnosed with Ulcerative Colitis in August of 2016, but most people outside of the IBD community have no idea I have IBD. In addition, many people do not know I lived in the National Radio Quiet Zone for a month last summer: no internet, no cell phone service…nothing!


Helping to make a difference in the IBD community

My name is Erin, and my daughter Caroline was only 9-years-old when she started losing weight, stopped growing and was exhausted all the time. As she grew sicker, she could not keep up with school, play with her friends, or participate in the activities she loves most: soccer and ballet. It took us almost 18 months to arrive at a diagnosis of Crohn’s disease.


New Resource: PAC Accommodations Toolkit

As co-chair of the Patient Advisory Council (PAC) Advocacy task force, I am excited to announce our new Accommodations Toolkit! Becky and I (with lots of support from the entire PAC and ICN social workers) developed this toolkit as a resource to help patients, parents and providers better understand and navigate the accommodations process.


Triumph Cords

Hi everyone, my name is Natalie and I just graduated from the University of Cincinnati (UC) this August with a degree in Environmental Studies and minors in Psychology and Biology. On my own time I am a health & environmental advocate and enjoy fighting for awareness & understanding of things people may not be educated on (like Crohn’s disease, which I also have).

Thanks to the UC journalism department, I was prompted to write a short piece for a video and article I was featured in for my school. It was about overcoming adversity and making it to graduation, and I wanted to share it with you.


College and IBD Handbook

The past few months, I’ve been working with my ICN center to create a series of ‘College with IBD’ handbooks. These handbooks are meant to help guide patients who are beginning the transition to college, or to provide additional support those already in school. I wanted to take the difficulties I experienced (and subsequent knowledge I gained) and create a resource that would support others in areas where I wish I’d had more guidance.


Moving Mountains

Prior to this year, I really didn’t understand what Crohn’s disease or IBD was. For about a month, I had been telling friends and family that my daughter was having stomach issues, and they would usually reply: “oh it’s probably just a virus; I’m sure it’s nothing serious.” Then on January 16, everything changed. My daughter, who is 13 and in 8th grade, was diagnosed with Crohn’s disease.


My American Academy of Pediatrics Talk

I was honored to be invited to talk about my joint experience as a young adult with IBD and medical student at the American Academy of Pediatrics National Conference and Exhibition in San Francisco. Guided by the philosophy of ImproveCareNow (I am a former co-chair of the Patient Advisory Council), I emphasized the necessity of patient and parent partnerships, as well as the value of mentorship and representation of disability in medical education. I invite you to watch my talk:

 

 

 


What now?

I am just over three months into my first year of medical school. I love it, really, I do. Every day is different and a new kind of challenge, causing me to both embrace and restrict change as I become and remember who I am.

Of course, one contributing factor to who I am is my ulcerative colitis. It rarely feels like a Disease, with a capital D. It is less of a dinosaur than a dandelion these days. Usually barely noticeable but ubiquitous in my fields of thought. But then, the slightest trigger of an associated idea or memory creates a flurry of emotion I can’t help but acknowledge.


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