ImproveCareNow Pac


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.


Sustenance, for a healthy life

My name is Maddie. I am 16 years old and I have Crohn’s disease (CD). I have used nutritional therapy as a primary treatment for my Crohn’s disease since my diagnosis at the age of 13. Nutritional therapy has changed my life – both my health and my relationship with food.


Dealing with a chronic illness can really make a person grow up!

My name is Salma and I am 16 years old. I am a senior in High School. I was diagnosed with Crohn's disease when I was six years old, after being in and out of the hospital for two years. I was actually born in Casablanca, Morocco, but my family and I moved to the U.S. when I was three.

“You feel your strength in the experience of pain.”

This quote by Jim Morrison is one I can relate to when I think about my experience with a chronic illness, even with all the struggles I write about in this post.


Patient's Intuition

Last month, I had the most entertaining ileoscopy in history (which is saying a lot since I was sedated for most of it). Let me give you the background on this:


The #AerieREAL Campaign

As a young woman who has had an ostomy for nearly five years, I know the struggle of not feeling completely confident and beautiful. Ostomy or not, a majority of teenagers and young adults struggle with confidence and body image. That’s why I was so excited to see Aerie, a company that has a reputation for not touching up their photos and for representing women of all shapes, sizes, and skin colors, take their #AerieREAL campaign to the next level. In their latest set of images, Aerie is representing women with various disabilities and illnesses, including a beautiful woman with an insulin pump, a stunning woman in a wheelchair, a graceful woman with Down Syndrome, and many many more wonderful ladies.


Personal experience with nutritional interventions

On June 5, 2017, my single, overweight suitcase and I boarded a plane flying from Miami to London Heathrow. Over the course of the next six months, I shadowed and worked with the IBD Team at Great Ormond Street Hospital, a tertiary children’s hospital in the center of London. As a Political Science major who intends to go into medicine, the opportunity to study how IBD patients were being cared for under the UK’s health system was too enticing.


PAC Travel Toolkit

Traveling with IBD, whether it be inside or outside the country, isn’t always easy. However, the PAC has created a new tool to answer questions, share experiences, and hopefully help ease some of the stress of traveling with IBD! Initially, we planned to offer information for patients wanting to study abroad. After giving this idea some more thought, PAC members decided a toolkit with general information about traveling is more relatable and would help more people. Thus, the Travel Toolkit was born!


I became my own worst enemy

My name is McKenna, I’m 18 years old and just graduated high school! I was diagnosed the fall of my sophomore year with Crohn’s disease. That year I quit playing soccer and joined the boys varsity football team for junior and senior year!  

My biggest struggle with Crohn’s was myself…I became my own worst enemy.


Being involved is empowering!

When I joined ImproveCareNow about 1.5 years ago, research was one of the primary ways I wanted to be involved. I’ve lived with Crohn’s disease for almost 11 years, and for much of that time research felt like something that happened behind the scenes and was entirely out of my realm of influence. Often research is done to or about patients and families, but very rarely is it done with them. Engaging patients and families in research can not only enhance the research itself, but it can also help patients and families feel as though they have a stake in the discovery of new knowledge about IBD.


Finding my place as a patient within ICN

I have been part of the PAC since August 2016. Getting started, I never knew that joining the PAC would be so life-changing for me. I never dreamed of being a part of something as innovative as I believe ImproveCareNow is. From my perspective, no other healthcare network has accomplished so much as ImproveCareNow. As a patient, it allows me to boast on those accomplishments, and it motivates me to work harder in doing my part to grow the network. Wait, but what is my role? The patient’s role?


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