Rare Disease, Big Burden

Danielle Lepar

Danielle Lepar

This summer I’m doing my internship at the Center for Managing Chronic Disease.  To lay down a little groundwork, chronic disease generally refers to conditions that progress slowly and have prolonged durations. According to the Centers for Disease Control and Prevention (CDC), chronic diseases are responsible for 70% of all deaths in the U.S.- a whopping 1.7 million each year.  The first time I came across these stats, they really shocked me.  And, while this magnitude of mortality is definitely an attention-getter, my recent exploration has revealed the importance of addressing the other (and perhaps under-recognized) dimensions of chronic conditions- quality of life, possibilities for prevention, and self-management to name a few. (I’ll be getting back to these points later.) 

Before I started working on my current project, the term chronic disease triggered a somewhat limited number of conditions to come to mind.  It’s not that I was unaware that other conditions existed, but I mostly thought of a few chronic disease BIGGIES:  heart disease, cancer, asthma, diabetes, you get the idea.  Inflammatory Bowel Disease (IBD) didn’t make the list. 

While IBD- which includes Crohn’s disease and ulcerative colitis- is rare compared to other conditions, it has the potential to have some pretty serious costs. Here are some key points about IBD that have affected the way I think about disease and burden:

1. Diseases with an early age of onset and that don’t cause a decrease in life expectancy mean that people relapse- and accrue costs- over a longer period of time.

2. Chronic conditions that start during individuals’ teens or twenties, impact them at a critical period of productivity and for developing individuals’ professional life.

3. IBD tends to be more prevalent in Western and industrialized regions.  While treatment innovation may be more available in these places, especially for people with “white collar” jobs, this also means the use of more health care resources and costs.

While the points above deal with a few of the economic costs associated with IBD, the serious psychosocial and quality of life burdens related to IBD should not be forgotten.  To learn more about Crohn’s and colitis visit The Crohn’s and Colitis Foundation of America or hear the stories of people living with Crohn’s at Crohn’s & Me.

3 thoughts on “Rare Disease, Big Burden

  1. It is NOT irritable bowel disease. Crohn’s and ulcerative colitis are collectively called INFLAMMATORY bowel disease.

    Please double-check the names of diseases before you publish something (especially as a future health professional!). It’s because of errors like this that people confuse irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD), the latter of which is an autoimmune disease.

    • Hello,
      Thanks, I made the change you pointed out. I have read a lot about the need for health care professionals to take greater care and sensitivity in distinguishing the names of these two conditions. As such, I appreciate your being in touch about this correction.

  2. interesting bit. could you provide me with more info about your and similar related research relating to the impact of chronic disease?

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