Every year businesses re-brand to distinguish themselves in the marketplace. Some, like Target, do it well with their designer-at-a-lower-price products. Some like abercrombie &
fitch no fatties and JC (confuse our loyal customers) Penney . . . not so much, but for totally different reasons. Re-branding can be an iPod or a New Coke; there’s a risk to everything.
CHD research is horrendously underfunded. We really don’t have a lot to lose, but plenty to gain. So I say, let’s re-brand! As advocates we can re-brand CHD to our advantage and disambiguate (love that wikipedia word) it from other forms of heart disease simply by using the word defect instead of disease.
I recently participated on a panel at the 2013 Joint Meeting of the Newborn Screening and Genetic Testing Symposium and the International Society for Neonatal Screening, where I suggested that we need to be consistent with the CHD brand just like Cystic Fibrosis is consistent with its language.
Another advocate asked me if it was Congenital Heart Disease or Defect. I explained that we do generally call it Congenital Heart Disease, but I think we should STOP. Let’s stop right now. CHD is more defect than disease and by calling it what it is, we can disambiguate it from what it is not. It is NOT adult onset cardiovascular disease. Let’s all call it Congenital Heart Defects because they ARE birth defects. Let’s differentiate CHD from adult onset cardiovascular disease.
The word “Congenital” is confusing to those who haven’t experienced birth defects. I once had a TV news reporter ask me about “congenial” heart disease . . . I suppose if it’s congenial than it’s a good team player? Anyway, now we have two complex, multi-sylablic C words followed by “heart disease” which is completely ambiguous, and the average unaffected person can’t tell the difference. Most of us have to admit that until our kids actually had CHD we didn’t know the difference either. I own that.
Let’s divorce disease and embrace defects because we will all be talking about the same thing. I want to use the right language, the right brand for what my son actually has, so that money raised to battle his actual affliction is directed appropriately. Besides, I think we’ll get more traction.
I want to use the right language so that any new parent with any one of a myriad and exponential combination of heart defects can find information easily. I want to re-brand so that if my son shows up to a survivors’ support group in his 20s or 30s surrounded by elderly people he can not only differentiate his condition but possibly seek out people with the same. Of course I hope someday there will be elderly people with Congenital Heart Defects, but to get there we need more, better, and faster research now!
We have no name recognition. We can’t drop Congenital because it’s accurate but difficult. But, we can explain that it is a birth defect, and it is also on a spectrum like autism. Some CHD cases are severe and immediately life-threatening and some are mild and need to be monitored if not treated. I want to re-brand CHD so that we are all on the same page, talking about a disease that starts in the womb and lasts until the grave. Right now this is a disease that has no “prevention,” just some slight risk mitigation. Risk mitigation, I will add, that many of us took and still had CHD babies.
So, here is the memo for our new brand roll out – please share. We don’t want anyone to miss the memo.
To: All those impacted in any way by Congenital Heart Defects (including patients, parents, children, spouses, grandparents, siblings, friends, neighbors, coworkers, etc.)
From: The Office of the Amandafesto, The Heartland
Date: May 18, 2013
Subject: Re-branding CHD to Congenital Heart Defects
In future, please try to explain CHD as a defect and stress the terms heart defect or birth defect as needed to ensure people you are educating about CHD understand that it is a health condition present (though not always detected or diagnosed) at birth. CHD is a structural or cellular defect of the heart muscle and surrounding vascular system and has hundreds of complex variations, so the term “heart defect(s)” may be the most effective way to introduce CHD. Please also remember to explain that CHD has a spectrum of severity, but all children and adults impacted by CHD (2 million and growing in the USA) deserve adequate live-saving research. Thanks for your support – let’s hope we’re not the New Coke and CHD awareness grows from this re-branding effort!