Thursday, November 15, 2012

The Terminology Debate

My next posting for the ACHA blog briefly explores the discussion/debate between referring to CHD as congenital heart "disease" or congenital heart "defects." It will be published tomorrow.

CHD: Congenital heart disease or congenital heart defect? Over the past year, as I have gotten more active within the CHD community, I have been asking this question more and more—both of myself and of other patients and advocates that I meet. I often see these two terms used interchangeably, and perhaps I am just focusing too much on semantics. Perhaps it’s because I used to work as an editor and proofreader for a publishing company that I naturally discover inconsistencies in the written word. Maybe this is just a moot point and not worthy of a blog entry. Maybe not.

When I began acclimating myself to this new-to-me world of adult CHD survivors last year, I decided to do a bit of research. The AmericanHeart Association recognizes that the terms are used interchangeably but states that defect is more accurate. According to the AHA, “The heart ailment is a defect or abnormality, not a disease. A defect results when the heart or blood vessels near the heart don’t develop normally before birth.” Using this as an initial reference point, I found myself consciously trying to refer to my congenital heart defect rather than my disease. But in my experience, I’ve discovered that disease seems to be the much more commonly used term within the CHD community.

When I posed this question to some people I met at Lobby Day back in March, one woman described the distinction as she saw it: babies are born with a heart defect but they grow up having a disease, a lifelong condition that can be treated but not cured. In her mind, using the term defect implied that CHD is something that can be fixed and then forgotten about. Since that conversation, I have often found myself using the same explanation when talking to others about CHD.

Perhaps it’s because I was fortunate to grow up never really having to think of myself as a heart patient that I was reluctant to adopt the disease term initially. For a long time, I saw my own CHD as a defect that was corrected with surgery when I was eight months old. But getting slapped back into reality after I fell off my bike last year and being “reintroduced” to my CHD seems to have caused me to be much less stringent on the terminology.

I now find myself using the terms somewhat interchangeably, but I still think the discussion is intriguing. I would be interested in hearing other people’s thoughts about it, whether or not they have even considered it before. While I would guess there are some people who do not think too much about the terminology, I would bet that some others have strong opinions one way or the other. If you are so inclined, I invite you to post a comment in response to this blog entry and share your own thoughts. If nothing else, I think this (like any) discussion about CHD has the very real potential to increase awareness and knowledge about the disease/defects and the reality facing those of us who live with CHD each and every day.