Monday, November 19, 2007
Living with chronic disease... pain into action
by Ben Leach
CNN Medical Intern
I was barely 16, in biology class - and had to run. Literally. Imagine getting your hand on the hall pass - desperate to go - only to find the boy's room locked, to keep out smokers. You have no idea what that means to a guy with Crohn's disease. Another time, I had to be taken out of class in a wheelchair.
I'm just one out of 25 million Americans living with a chronic disease. The CDC says seven out of every 10 people Americans die a year from them. I was just 16 years old when I was told I had Crohn's disease, an inflammatory bowel disease usually diagnosed in patients between the ages of 18 and 35. About half a million Americans suffer from the same thing - another half a million suffer from its GI cousin, colitis. Symptoms include abdominal and rectal pain and diarrhea. It's a disease you can manage, but not cure. For me, a high school sophomore, I lost weight and felt weak and experienced a laundry list of humiliating symptoms from abscesses in my posterior to constant trips to the bathroom. I went from perfect attendance in school to missing weeks of class at a time. I had no clear idea what was happening to my body, and I wondered - and feared - about my future.
But as confusing for a kid as the diagnosis was, the treatment course also was difficult. I was prescribed a corticosteroid to reduce inflammation, which on faith - and, doctor's orders - I took every day. Bad call. Not only did it not manage the progression of my disease or make me feel better, it caused bone loss - and I ended up with osteoporosis as a teenager. Later, I was given an infusion that worked wonders for a time, but eventually my body developed antibodies to it.
So there I was - sick - with treatments that didn't help me - they hurt me. But I learned something very valuable. I learned to speak up. I sought out a doctor who knew something about Crohn's disease. I found treatments that worked, and by late in my junior year in college, I had my disease under control.
I was determined not to let others make the same mistakes I made. I started training in a local pharmacy to become a pharmacy technician because I wanted to learn more about medicine. I learned about an array of drugs - not just the ones I was taking. I realized I wasn't alone, and had plenty of firsthand knowledge to share both as a patient and behind the counter.
I also found I had a passion for medical reporting, which brought me to CNN's medical unit. I have learned that it's ultimately all about asking questions. When my disease was diagnosed, I wasn't asking nearly enough questions. Now, working alongside journalists and researching stories, I've found answers: My personal agony as a patient has made me realize I want to be asking the questions that help others with chronic diseases find their own solutions as I continue my path to medical reporting.
Living with a chronic illness forces you to find your own definition of "normal." I spend a good deal of time looking at statistics - I knew I didn't want to be one of them - and on education and sharing information. It's my way of not being just a number, but living my life - and living well - with Crohn's disease.
Do you live with a chronic disease? What's worked for you? We'd love to hear from you.
ABOUT THE BLOGGet a behind-the-scenes look at the latest stories from CNN's chief medical correspondent, Dr. Sanjay Gupta, and the CNN Medical Unit producers. They'll share news and views on health and medical trends -- info that will help you take better care of yourself and the people you love.
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