Dear Scientist,

I was diagnosed with ulcerative colitis (UC), a chronic illness when I was 17 years old. I was diagnosed a week before school started. I was really just focused on, “ok, how can I be healthy enough to get to school?” I think I was always worried that I was missing things. I had a fear of missing out in school, wanting to stay on top of my work and not fall behind, but also this worry of other people judging me and being like, “Where is she going? Why is she gone all the time?”

The first five years were full of feeling isolated and alone, spending hours in the bathroom as my insides attacked themselves. When you’re sick and flaring and you spend so much time in the bathroom you start to be kind of over it, and as much as a bathroom is a source of comfort, you get so tired of being in there and knowing that so much life is happening outside and you can’t leave your house or your bathroom or wherever you might be because you’re going to need to get right back there.

It wasn’t until 2015 when I attended the Crohn’s and Colitis Take Steps walk in Boston that I first saw people my age living with UC and thriving. Meeting them changed my perception of what was possible. I am now honored to volunteer for the Crohn’s and Colitis Foundation, sharing my story and working towards legislative change that will impact the larger chronically ill community. 

It took me ten years to finally reach remission — something many of my UC family never has. We are fortunate that there are so many medications in flight and development, but there’s no great way to know the impact of a treatment before our diseases progress.

How are you working to help get patients the medicine they need as quickly as possible?

Sincerely,

Jordyn