Posted by Stacy Koschney on December 20, 2022
My name is Stacy and I am Co-Chair of the Children's Mercy IBD Patient Family Advisory Council (or "IBD PFAC" for short). I have twin boys and one of them is a patient of the Children's Mercy IBD Clinic. An interesting fact about me is that I am also an RN and I have worked for the Veteran's Hospital Administration for the past 17 years.
A challenge I experienced with having a newly diagnosed child with IBD was not having an IBD specialist in our hometown of Wichita. There are only 2 pediatric GI providers in Wichita, and I felt they were not equipped with all of the information and resources that my son would need. This was challenging because I didn't know where to turn to for more help.
I wanted to change providers and find an IBD specialist for him. I felt it was important to act quickly because medications were not working, we needed further education, and we needed more support.
I started doing research through the Crohn's & Colitis Foundation website and I found a Virtual IBD family education day through the Cincinnati Children's Hospital. My son, husband, and I attended that virtual education day and learned so much. We learned that there are children's hospitals available with specialized multidisciplinary IBD teams. This was very exciting news, so I started searching for the closest children's hospital to us and found the IBD Team at Children's Mercy Kansas City. I contacted them immediately and we had our first Multidisciplinary IBD Clinic virtual appointment within 2 weeks.
Upon switching to Children's Mercy, we learned about ImproveCareNow and the Children's Mercy IBD PFAC. I signed up and have been receiving information from ICN for about a year now. I joined our local IBD PFAC last year because I wanted to share my family's experiences and see how I can help other IBD families who share some of the same struggles as ours.
A couple months ago, I became the Co-Chair of the IBD PFAC. I'm hoping that through the work of the IBD PFAC along with the IBD clinic, we can inspire other hospitals or IBD clinics to ensure they have a strong patient and family involvement in their clinics - so everyone knows where they can turn to for more help.
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Connect with other IBD Caregivers in the ICN Parent/Family Advisory Council → improvecarenow.org/connecting-parents
"You will find parents who are committed to improving the lives of IBD patients and families. We work side-by-side with the patients and doctors to better care for these kids." - Martha 💚💙
