Did you know that one out of 100 people have congenital heart disease (CHD) - meaning that when they are born they have something structurally wrong with their heart. It has nothing to do with diet or smoking or weight. For me, it was four different defects. Rolled into one, it’s called Tetralogy of Fallot. When I was born there was NO surgery and my chances to live was very low. I am lucky and I did eventually have surgery (in fact three of them so far). BUT I will never be cured.
CHD is a lifelong disease. Now because of amazing pediatric heart doctors, there are more adults living with CHD than children but that doesn't mean the problem is fixed. We have little data in the US to help the millions (yes, millions) living daily with the lifelong effects of being born with CHD. It's the #1 birth defect but yet, it still gets little press or attention.
February is Heart Month and February 7-14 specifically is CHD Awareness Week. Please help me and the Adult Congenital Heart Association (ACHA) spread the word. If you know of anyone who was born with a heart defect and does not see a doctor because they think they are cured/fixed or whatever term they have heard that implies they do not need medical care, give them the facts. Only 10% of adults with CHD are in appropriate care. Children and adults with CHD still suffer disability and death. We know that appropriate care makes a difference which is why adults should be in the care of an adult congenital heart disease cardiologist. It will make a difference in their life. I promise you – getting that care changed the trajectory of my life because I wouldn’t be here to write this today.
Visit ACHA’s Heart Month page at achaheart.org/heartmonth and change your Facebook profile/cover photo. There are simple ways to help for everyone. Don’t forget to also educate your family and friends and ask them to help raise awareness. Thanks for reading and now let’s make a difference by taking action during February together!!
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The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.