Resources
Quick Facts about Childhood-onset Heart Disease
- Each year about 1.3 million children are born with congenital heart disease (CHD).[1]
- One in four will die without immediate intervention[2] and many more will need childhood surgery to reach age 18. But 90% of the world’s children have no access to cardiac care.[3]
- In many disadvantaged communities, untreated infections also can cause rheumatic heart disease (RHD).[3]
- RHD is the most common children’s heart problem in many low-income countries. Worldwide there are an estimated 33 million people living with RHD.[4]
- Both CHD and RHD patients need life-long special cardiac care to keep their hearts healthy. Even countries with excellent childhood heart care often struggle to care for these patients as they age.
- We need your help to ensure that every person with childhood-onset heart disease gets the care they need to live a long and healthy life
References
- van der Linde, D., Konings, E. E., Slager, M. A., Witsenburg, M., Helbing, W. A., Takkenberg, J. J., & Roos-Hesselink, J. W. (2011). Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. Journal of the American College of Cardiology, 58(21), 2241-2247.
- Moller JH, Taubert KA, Allen HD, Clark EB, Lauer RM. Cardiovascular health and disease in children: current status. A Special Writing Group from the Task Force on Children and Youth, American Heart Association. Circulation 1994;89(2):923-930.
- Carapetis JR, Steer AC, Mulholland EK, Weber M. The global burden of group A streptococcal diseases. Lancet Infect Dis 2005;5:685-694.
- Watkins DA, Johnson CO, Colquhoun, SM, Karthikeyan G, Beaton A, Bukhman G, et al. Global, regional, and national burden of rheumatic heart disease, 1990-2015. N Engl J Med 2017; 377:713-722.
Resources for Childhood-onset Heart Disease
- Childhood-Onset Heart Disease Fact Sheet
- Heart Failure A practical guide for CHD patients
- What is Rheumatic Fever and Rheumatic Heart Disease? (Reach)
- The Heart Dialogues - a newsletter featuring candid conversations and writing for people born with heart conditions (and the people who care about them)
- Life Beyond Surgery: Addressing the neglected issue of providing long-term congenital heart care in middle-income countries
- Talking to Dr. Adrienne Kovacs about CHD and Mental Health
- A guide to more effective, less stressful cardiology visits
- Psychological Aspects of Living with Congenital Heart Disease: Information for Patients and Families
- American Heart Association: Scientific Statement CHD and Mental Health
Healing Hearts and Minds. A Holistic Approach to Coping Well With Congenital Heart Disease, by counselling psychologist Dr. Liza Morton and clinical social worker Tracy Livecchi. Available at Amazon.
