Hi, my name is Joanna Hagedorn and I'm a parent partner for Boys Town Pediatrics GI Clinic. I also work in conjunction with the Improve Care Now Network. My son Riley was diagnosed with Crohn's disease in 2012, but I've actually been dealing with Crohn's and Colitis, nutrition, and the ins and the outs for the last 15 years. I'm here to help you navigate the road, the peaks, the valleys, the ups and the downs of your pediatric IBD diagnosis.
Boys Town Pediatrics works with a company called Improve Care Now. Now what they do together, both parties is they work to improve and better the lives in the care of pediatric IBD patients. Quite a few years ago, Improve Care Now decided that it would be a really great idea to bring on the parents to get their perspective and their ideas, to kind of round out that great patient care. So together I work with the doctors and I work with parents and I work with patients to create that great myriad of awesome care between the parent, the patient and the doctor, anything these parents need that's not medical related, emotional support, physical support, mental support, spiritual support. I connect them with not just me, but other parents, other people around the U.S. that can actually help them.
When you're diagnosed with IBD, it opens up a very scary world. Not only is the first step talking to the parent, but the second step is almost teaching the parents and teaching the child how to advocate for themselves ,how to go to school, how to deal with some of the pain, how to deal with some of those different ups, those different downs that they come in contact with. It almost takes a village to grow your IBD life and so if I can get everybody together or just plain give you the resources that you need to get through this, I know that you're going to be on that right path and mentally you're going to be good to go.
Joanna Hagedorn is a Parent Partner with the Pediatric GI team at Boys Town Pediatrics and also works with the ImproveCareNow Network. Joanna speaks about her experiences and offers advice to other parents going through an IBD diagnosis.