Being an Advocate

What a busy January! I'm finally back into the swing of things after the council trip to Philadelphia. So far, being on the National Youth Leadership Council - or whatever it's now or will be called - has been a great experience. All two weeks of it. I'm learning a lot about what's going on in IBD in the other parts of the U.S., especially with research. Hopefully in the next few years we'll be treated more specifically on the pathways that are being blocked by the mutant genes we have. The Children's Hospital of Philadelphia is also going to be looking into what is the "perfect" bacterial state of a healthy gut, and hopefully determine what kind of diet would help a Crohnie reach the same levels of bacteria.

Although it's scary thinking that I'll be working with entirely new branches of CCFA, it's really exciting. If all works well, I'll be able to work with Crohnies from the University of Minnesota to reach an even wider audience than St. Olaf and the Northfield community.

The rate of IBD is increasing - probably a mix of better diagnosis and whatever environmental cause. However, people still aren't understanding our disease. One of the leaders of the council explained how her professor wouldn't allow her to take a test later even though she had spent the night in the hospital. Things will only get better if we go out and educate people about our disease. I know poop isn't the most glamorous thing, but we all do it. If you don't spread the word, how can you expect others to understand what your needs are?

For more advice/information on living with IBD in college, you can like Campus Connection on facebook, or go to the National Youth Leadership Council webpage on CCFA. If you type those in google search bar, it should pop up. In the next year we'll be revamping the webpage to have more information and better access to all the links/templates provided on the CCFA webpage. Also, we'll hopefully have programs that will help you spread the word about IBD on your campus. The next couple years should bring about a new understanding of this disease, and I'm very excited that we all get to be a part of this.