ImproveCareNow Parent_partners


Staying warm and comfortable during infusions

Hi, my name is Ella and I am 12 years old. I am currently a 7th grader who likes spending time outdoors and hanging out with my friends and family.

When I was nine years old, I started feeling sick. I was nauseous all the time, had trouble eating without pain and was so tired I could barely get through the school day. By the time summer arrived, I couldn’t even walk an entire block without feeling ill. We didn’t know how serious it was until I was diagnosed with Crohn's disease at age 10. By then, I had stopped growing and was severely underweight. It was very difficult for me, especially in the beginning. The first rounds of medication were not successful; I couldn’t tolerate them. In August of 2017, I began receiving IV infusions (Remicade) at Yale New Haven Children’s Hospital. I am now in remission and feel great but going for IV infusions as often as every four weeks, as well as taking oral medications, is my new “normal” and the inspiration for an innovative project I’m working on.


Navigating Empathy and Emotional Labor with Patient Advocates

My name is Catalina - I’m a current co-chair of the ICN Patient Advisory Council, a social/clinical research assistant at the University of North Carolina and will be starting medical school soon. I recently gave a presentation at the Anderson Center for Health Systems Excellence about emotional labor, empathy and how to navigate these concepts when working with patient advocates. I wanted to share some of my talking points with you here.


I will never forget the day my son’s symptoms began

My name is Ann, and I will never forget the day my son's symptoms began. There were six of us. We had all gone out to enjoy a Chinese dinner. The time was the summer of 2009. Later that night, Richard who was 8 years old, started vomiting. We thought he probably was reacting to something in the restaurant food, but none of the rest of us had a problem. This was the start of Richard’s trouble with Crohn’s disease.


Creating an ICN-like learning network for autoimmune liver disease

Hi, I’m Jane, “Mom” to beautiful 20-year-old Nicole. I serve as a parent representative at CCHMC for ImproveCareNow (ICN) and our local network called: IBDevoted. I am also a Board member of the local chapter of the Crohn’s & Colitis Foundation. In my professional career, I work for a large Catholic healthcare system handling medical malpractice cases. While I’m not technically a healthcare professional, I joke that “I play one on TV”!


Our involvement with ICN has been a family affair

Hello Fellow Improvers! I am Nicole and I have been part of the ICN Community for four years. During this time, I’ve been grateful to enjoy several Community Conferences and have been an active participant in improving care both at the national level with the ICN Parent Working Group (PWG) and locally as the Co-Lead of the Parent/Patient Advisory Team (PPAT) at my care center in Massachusetts. I'm pleased to introduce my family to you!


IGNITE - Find your purpose and help others

NO ONE can prepare a parent to hear that their child has to live with a lifelong medical condition and that there is NO CURE.- Maria Lester

Maria has lived through this twice. The first time was when her oldest daughter was diagnosed with Type 1 Diabetes at 4-years-old. Then, nine years later her youngest was diagnosed with Crohn’s disease, Celiac disease, and Primary Sclerosing Cholangitis at 6-years-old. After each heartbreaking diagnosis, Maria remembers reassuring her children that everything would be OK. And in those moments, she found her purpose – she was going to do everything in her power to make sure it would be OK. She dove in headfirst, connecting with disease communities to get support and learn all she could about these diagnoses. She said yes to opportunities to partner - to contribute her time and talent to improve the lives of not only her children, but other families walking the same path she has walked. Through this she has learned a powerful lesson – “that when you find your purpose, you realize there is a cause bigger than yourself and shows you the strength you never thought you had.”

Below is Maria’s full #IGNITETALK from our Fall 2019 Community Conference. As you read her words, ask yourself: what is my purpose?


Making lemonade

Our son, Grant was an extremely active 13-year-old who played lacrosse and tennis, mountain biked and skied. It was hard to believe he had a disease when he looked and acted so healthy. What caught our attention was an abscess that would not heal. After three surgeries, a series of tests, and a colonoscopy, it was confirmed Grant did, indeed, have Crohn’s disease.


What should I do first?

The first question new parent partners often ask is: What should I do first? One of the first projects I worked on with my team was to create “CHOC’s Guide for your IBD Road to Wellness” – a handbook for newly diagnosed families.


It was a journey of the senses...

My name is Heidi. I’m thrilled to share a bit of our journey…

When my husband & I traveled to India to adopt our kids, 15 plus years ago, it was a journey of senses: taste, smell, touch, sound, and sight. I have learned that parenting a child with a chronic illness is also a journey of the senses. When our 19-year-old son, Stephen, was diagnosed with ulcerative colitis the summer before his junior year of high school, we had no way of knowing where that journey would take us.


Predictions

Remember potty training your precocious toddler?

Remember running to the bathroom to teach your child the proper way to use the potty? Now, imagine potty training your recently diagnosed IBD toddler. Who would have ever predicted that we would be dashing to the bathroom about 20 times in ONE day? This was our introduction to the world of Crohn's!


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