Here is the leadership update from our February e-newsletter:
I hope this e-newsletter finds you enjoying the pleasures of mid-winter, whether they be the beauty of the ice and snow, the slowly-lengthening winter afternoons, or chip and dip while watching the Super Bowl. We were thrilled to learn that Max Page, the little Darth Vader featured in the most-acclaimed Super Bowl ad, is a survivor of complex CHD (Tetralogy of Fallot). As I watched Max’s quest for “The Force,” I thought about what kind of “Force” he will need to ensure that he continues to thrive throughout his lifespan. Three things are essential: high-quality lifelong care, research and education.
Guidelines state that, after they leave pediatric care, all those born with complex CHD should see specially-trained ACHD cardiologists. ACHA offers an online directory of over 100 ACHD programs in the U.S. and Canada and encourages our members to make sure they are getting care from providers with special training in their rare conditions. More information on ACHD care guidelines for adult patients and parents is available. Why is this special ACHD care so important? Because no matter how perfect the “repair,” many CHD survivors face a high risk of developing new heart problems as they age. The good news is that, with the right care, these problems can often be caught early and treated effectively. But right now many congenital heart patients do not get the care they need once they reach adulthood.
Another essential “Force” for CHD health is CHD-specific research. As adults with CHD age, they are developing new problems not anticipated at the time of their original repair. Many of these problems are new to medicine, since we have never before had adults living with these complex conditions. Research in “regular” hearts will not help answer questions like: When is the best time to replace the pulmonary valve in Tetralogy of Fallot? How can we better treat digestive issues in those living with one ventricle? How can we better predict which ACHDers are at risk for sudden cardiac arrest? Right now we need answers to these and many other research questions, and research in adult survivors of CHD is still extremely limited. You can help ACHA change this landscape by getting involved in our advocacy efforts, and educating your community on the need for congenital heart research. In alliance with our research partners, ACHA is also executing and promoting multicenter ACHD research. To learn more about ACHA and research, attend tonight’s webinar, Research 101, at 7-8 p.m. EST. To register, click here.
But all the research and good care in the world will not help if Max himself does not have the information he needs to negotiate life with a rare congenital heart condition. Speaking personally, although my parents and pediatric team did a great job helping me thrive as a child with CHD, my lack of understanding of my risks and need for special care as an adult led to a number of “near misses” as I found my way back to needed care. You can help get the word out about ACHA’s Heart to Heart program, which offers publications, webinars, and education to patients every day, and about our peer education efforts via the Heart to Heart Ambassador program. We also hope you will come to ACHA’S 6th National Conference, which will highlight the best of ACHA’s research, advocacy, and educational efforts. Limited travel and hotel scholarships are still available for those found eligible – for more information click here.
Hope to see you in April,