2/2/2012 2:44 PM
By Christy Sillman
February is Congenital Heart Disease Awareness Month, and I’m feeling a little stuck on how to bring about more awareness. I mean, I’m aware of CHD because I have CHD. My close family and friends are aware because someone they love (me) has CHD. But how do I get the average acquaintance to become more aware of CHD without it coming across like I’m complaining or being annoying?
What do I even want them to be aware of?
I want them to be aware of how common CHD is. One in 110 babies are born with some form of CHD; that’s a high rate of occurrence. This isn’t a rare disease.
I want them to understand that it can be a “silent” disease. That even though I look “normal” I face challenges every day that others don’t. It’s a condition I always carry with me, even if I don’t always garner attention about it.
I want them to understand that it’s not a cookie cutter disease. Every person with CHD has a unique set of issues and has faced many different types of procedures.
I want them to know that even though I’ve had “corrective surgery” my heart will never be repaired or “normal.” Once you cut into a heart it is forever changed.
I want them to understand that CHD is still considered a pediatric disease by many in the medical community, but since the development of successful treatments, there are now more adults with CHD than children, and our needs are unique within the context of aging and adult life events. Despite this shift in the CHD population, most research continues to focus on the pediatric patient with CHD.
I want to feel supported, not pitied.
OK, so, the question is – how do we get people to care? There are so many other diseases and ailments out there. Cancer, AIDS, cystic fibrosis, just to name a few. They all deserve the spotlight too! How do we make CHD stand apart?
We will find our strength in numbers. As adults with congenital heart disease, we have the voice we didn’t necessarily have as children.
We utilize the month full of heart-shaped candies to spotlight our specially-shaped hearts.
This February, let’s each make a goal to do one thing to bring awareness to CHD. Ask yourself what you want others to know. Get creative in how you do it. Pick a target audience and tailor it to them. Maybe you can raise a dollar or two in the process. Let’s build momentum as we gear up for Congenital Heart Lobby day on March 1, 2012.
My goal is to bring about awareness through the use of social media like Facebook. The key is to do it in a subtle way that won’t create mass exodus from my friends list. No one likes to be defriended.
I have ideas in the works on how to spread awareness and raise money to donate to ACHA. I’ve been inspired by my CHD friends and the awesome activities they have planned for this month. What do you plan to do to spread CHD awareness this month?
Let’s make February a month full of love, laughter, and light as we shine the spotlight in the direction of our amazing hearts.
Christy Sillman was born with tetralogy of Fallot with pulmonary atresia and now works as a pediatric ICU nurse. She is passionate about working with both children and adults with congenital heart disease. Christy writes a weekly column on her experiences as a nurse, ACHD'er, and new mother, which you can read at iPinion.us by clicking here.
2 comment(s) so far...
By Tina Rinaldi on
2/2/2012 4:08 PM
Re: Heart-Shaped Awareness
Great post! My sister is doing this for me and I'm spreading the word on this wonderful tribute she's doing. Interestingly, even though she knows about ACHA, she apparently doesn't know that it's not only National Heart Month, it's also Congenital Heart Disease Awareness Month.
By Mark Gallagher on
2/11/2012 9:58 AM
Re: Heart-Shaped Awareness
Christy, I love what you have said here and how you have put it in an easy to understand way. I hope you don't mind but I have used your words as my facebook status for this week to raise awareness as I couldn't have said it better myself. Thank you.