LOOP Blog

My name is Maria and I live in Orlando, FL. In 2004, our family received the devastating news that our oldest daughter had Type 1 Juvenile Diabetes. I would have never imagined that a few years later in 2013, we would find ourselves confronted with yet another life altering diagnosis. 

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.

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.

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:

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.

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.

ImproveCareNow Community Engagement Learning Series (CELS) trainings were designed by patients, parents, clinicians, and ImproveCareNow staff to share best practices and new skills. Whether you are just getting started or have an established team, you will get something out of these trainings. Each session presents new skills, and provides a chance to work with others to plan how to implement what you learned at your center. Each CELS training is designed to empower you to connect more patients and parents to your team, to build relationships, develop leaders, and share information that improves lives.

Last year I joined the board of ImproveCareNow (“ICN”). ICN is a collaborative health care network dedicated to improving the care and outcomes for children with Crohn’s disease and ulcerative colitis (also called Inflammatory Bowel Disease or IBD). What excites me about ICN is that it has developed a transformative model for the delivery of health care unlike anything I have ever read about or experienced myself.

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 always get nervous before group meetings. I worry that no one will show up or that the material won’t be helpful. Last Wednesday was no exception. When I walked into a conference room at Cincinnati Children’s Hospital I was nervous but shouldn’t have been. I was greeted by smiles, waves, and pizza.

I felt comfortable, accepted, and ready to learn.