LOOP Blog

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on October 23 between 6 and 8pm eastern for our Fall 2019 Virtual Community Conference. Read more to see the agenda for this event.

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.

“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?

My name is Phoebe and I am 16 years old. I have Crohn’s disease and I was diagnosed one year ago. One thing most people don’t know about me is that I do aerial silks.

ImproveCareNow Community Conferences happen twice a year. While our community works together across the miles throughout the year, these in-person meetings provide an opportunity to work on developing and spreading QI and research skills and approaches; fueling our Network's use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD. Join us as we continue to co-develop our three pathways to work towards our common mission: to transform the health, care and costs for all children and adolescents with Inflammatory Bowel Disease.

My name is Ian and I’m a clinical research coordinator at the University of Vermont (UVM) Children’s Hospital. I work 20% of the time on ImproveCareNow (ICN), and the rest is spent supporting a variety of other pediatric clinical trials at UVM Children’s. Our pediatric GI team has been participating in ICN since 2007 and we are continuously looking for ways to improve the health and experiences of the kids we care for. Recently, with support from the ICN Engagement team, we volunteered to try and make improvements to our process for getting our patients and families aware of and taking advantage of the benefits of our ImproveCareNow participation. Last August we began testing ways to improve the very first step in this engagement process, Awareness.

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.

Hello! My name is Mahalakshmi (Maha for short!), and I am 18 years old. I have Crohn's disease, which was diagnosed two and a half years ago, but I've definitely had it way longer than that. I am attending college in California in the fall as a biology major and I'm excited for what the future holds! My hobbies include singing, acting, spending time with friends and family, and playing board games. One interesting thing about me is that I love languages. I've been bilingual since I was a child and started learning another language in high school that I hope to stick with in the future!

My name is Rohit and I am 20 years old. Right now, I am a rising junior majoring in Genetics with a Certificate Program in Computational Genetics at an Honors College in New Jersey. I was diagnosed with Crohn's disease in 2016. One interesting thing about me is that I'm the only one above 6 feet (actual height: 6' 2") in my entire immediate family!

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!