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.
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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.
