"My most important legacy."

Alison Rothbaum
Chapter 1
The Kid Who Held Up the Carpool

It's been more than 20 year since I was diagnosed with Crohn's, but I can trace my symptoms back to when I was as young as five years old. I was the kid who would hold up the carpool while everyone waited for me in the driveway, because I could not get out of the bathroom.

In the 1990s, when I was in my teens, the symptoms got worse. I went from getting perfect-attendance awards to feeling lucky if I could make it through a full day of school. I got into the habit of carrying Pepto-Bismol with me all the time, and when I ran out I would sometimes even call my mother to ask her to bring me some more, wherever I happened to be.

Still, I was playing high-school tennis and was a typically active, outdoorsy teenager. When I was suddenly sidelined because of the pain and discomfort, a lot of people thought it was largely due to depression. We lost my grandfather to cancer in August 1994, and he and I were very close. In fact, I remember that summer he was getting angry at me because he thought I wasn't eating enough. He watched the pounds melt off of me, but none of us could have imagined this dramatic weight loss was due to a chronic autoimmune disease.

Chapter 2
The Vocal One

I was a sophomore in high school when I was finally diagnosed with Crohn's. As it turned out, there was one other person in my school who had Crohn's, but she kept her diagnosis very private and was not very open about it. She and I were friends before I was diagnosed, but afterward we grew apart. It's not like we sat down and said we weren't going to be friends, anymore. It was just that I thought I had to be more vocal about it, so I kind of became the unofficial spokesperson for Crohn's at my school -- even if I didn't really understand the disease at that point, and I certainly didn't know enough about it to clearly explain it to my fellow students, my teachers, the school principal.

I missed a lot of school after that, and basically began living in Cincinnati Children's Hospital Medical Center for weeks at a time.

Chapter 3
Armed With Knowledge

My fight really began at diagnosis. I wanted to understand as much as I could about this disease that was wreaking havoc with my body. At the same time, I had to fight off rumors about what was wrong with me. I also became known as "the sick girl" in my high school, which is a really, really tough thing to deal with when you're a teenager. You know, none of us wants to be the oddball, or the outcast, at that age.

I think that's one of the key reasons I wanted to arm myself with knowledge about this disease from the very start -- so that I could share that information and insight with the next person who might be diagnosed with Crohn's, and try to make sure that he or she never had to endure what I had to go through when I was in school. I think of that as maybe my most important legacy -- the knowledge that I can pass on to others.

Chapter 4
Not a Disease for the Shy

I knew I wanted to be involved, in some capacity, in healthcare ever since I was eight years old. In fact, I know that my interest was sparked when I was that age because my dad had rotator cuff surgery right around that time, and watching him recover made me realize I wanted to be a physical therapist. But I also learned at a young age that I was going to have to fight for every single thing I wanted to attain. There would always be people who would question my ability to pursue my dreams, to lead a full life, and the reality is I still have to prove myself to everyone -- especially myself.

I used to be very shy -- and this is a very tough disease for anyone who's even slightly shy. It's critical for Crohn's patients to understand that they are not on this journey or in this fight alone. There is always someone willing to hold their hand, to hear their story and their fears, and let them know it will be okay. It might not be ideal, but it will be okay.

Finally, anyone with any sort of autoimmune disease has to always, always be open to learning new things. Personally, I am learning something new every day -- and I am not new to this autoimmune world. Having an open mind is as important as finding a doctor you trust.