Every Adult with CHD Was Once a Child with CHD...

Posted Wednesday, Feb 01, 2017

Philadelphia, PA (February 1, 2017) – The Adult Congenital Heart Association (ACHA) announced today the launch of their Heart Month campaign – Every adult with CHD was once a child with CHD - this February is focusing on the importance of raising critical awareness of congenital heart disease (CHD) and lifelong care from childhood to adulthood.

Congenital heart disease (CHD) is the most common birth defect and #1in100 babies are born with the disease each year in the United States. The successes in treating pediatric patients with CHD has led to a growing, complex adult population which is now larger than the pediatric population. It is estimated that 20,000 adolescents enter adulthood with CHD each year, adding to the 1.4 million adults living with CHD in the U.S.

“As someone living with CHD, I have seen first-hand how critical it is to be on the lifelong care continuum and how important it is to work with an adult congenital heart disease (ACHD) cardiologist,” said Christy Uher Ferguson. “I was 'lost to care' for a time in my life because I did not have a cardiologist who specialized in ACHD and truly understood my CHD. However, I finally got back into specialized care to ensure that I had the best quality of life that I could have.”

Christy was diagnosed with a complex CHD - Tricuspid Atresia, Atrial Septal Defect (ASD) and Ventricular Septal Defect (VSD) – at birth.  She had open heart surgery in 1978 at five years old and received ongoing heart care from then until she was 18 years old. After that, because Christy had no complications, she did not see a congenital heart disease doctor again until her late 20s. She was finally referred to an adult congenital heart disease (ACHD) clinic at that time. This brought her back into care.

 “Christy’s story is not uncommon and even today only about 10 percent of adults with congenital heart defects are getting the recommended care they need,” said Curt Daniels, MD, FACC, Chair of the ACHA Medical Advisory Board. “This is exactly why the Adult Congenital Heart Association is launching this critical awareness campaign starting in February for Heart Month.  We want to educate the public to know if you were a child with CHD that you are now an adult with CHD and lifelong care is a priority.”

To find out more information about ACHA’s campaign this February and how you can help promote this campaign, go to www.achaheart.org/heartmonth or call 1-888-921-ACHA.

About the Adult Congenital Heart Association
The Adult Congenital Heart Association (ACHA) is a national not-for-profit organization dedicated to improving the quality of life and extending the lives of adults with congenital heart disease (CHD). ACHA serves and supports the more than one million adults with CHD, their families and the medical community—working with them to address the unmet needs of the long-term survivors of congenital heart defects through education, outreach, advocacy, and promotion of ACHD research. For more information about ACHA, contact (888) 921-ACHA or visit www.achaheart.org.