In the summer of 2009, Mia Brown experienced the first symptoms of what soon was diagnosed as Crohn’s disease, a chronic disorder that causes inflammation of the digestive or gastrointestinal tract. The incidence is highest in Caucasians and Ashkenazi Jews.

According to the Crohn’s & Colitis Foundation of America (CCFA), 1.4 million Americans have the disease, though some people have no symptoms and require no treatment. The disease is primarily diagnosed in teens and young adults, with some 30,000 new cases diagnosed each year. Treatments—including numerous medications, nutritional help and sometimes surgery—can reduce inflammation and ease symptoms, but there is no cure. 

Mia, 14, now manages the disease better than ever and has not been hospitalized for over a year. Last fall, Mia started a Crohn’s and Colitis Teen Support Group, which meets once a month at Central Reform Congregation with Rabbi Susan Talve serving as its facilitator.

“My goal is to help kids,” Mia said. “I started the group because I felt like I wanted support, and I also wanted to get to know other kids with Crohn’s, so we could share strategies.”

Mia made time recently to talk about the support group and coping with Crohn’s disease.

Talk a bit about the support group.

We’re still at the beginning stages, because the one member we had is moving to another state. If we get more members and get going, we also may try to do a small service project, maybe visit Crohn’s patients in the hospital and help cheer them up. 

Why do you think you haven’t heard from more teens?

People may think the support group is just for CRC members or just for Jewish teens. It’s not. I want all kids to feel welcome, and to know they are in a safe environment. What you say there stays in the group.

What is your strategy to get new members?

I hope to meet other teens at the 2012 Take Steps/St. Louis walk, a fund-raising event for the CCFA. The walk is June 3, at Creve Coeur Lake Memorial Park. To register, people can call 314-863-4747. I walk with Remicade Renegades, a group I started, and anyone who wants to meet there can email me at [email protected].  

Any other ideas how to reach teens? 

I have thought about writing a book for teens on how to cope. The CCFA has material for younger kids and adults, but not for teens. I would like teens to better understand what Crohn’s is.  

What would your approach be?

I want to make young people more aware about Crohn’s. A lot of kids don’t realize it’s not contagious. Many people go in remission, and I want kids with Crohn’s to understand they can get to that point. 

What else would you tell newly diagnosed teens? 

When you have Crohn’s or colitis, you learn more about the body and what it can and can’t do. 

It must be hard for anyone to hear this diagnosis, but especially for teens.

When they are first diagnosed, they may not feel like it’s true, but they will be better. There are a lot of new treatments available, a lot of new research, and you always get better at managing Crohn’s. 

What’s particularly troubling about having Crohn’s? 

At first, you just never know when it will flare up. One hour, I would be playing a game and the next hour, I would be curled up in a ball, in excruciating pain. Or maybe I would feel fine and go out to dinner and then get sick when I came home. 

How have you gotten better at managing? 

I can almost predict problems, especially if I am close to a treatment. Then it seems the worst times of day for me are 8 a.m. and 8 p.m. Now I understand what my body can take and what it can’t. I do everything I can to keep it under control.