A congenital disease indicates that the condition is present from the time of birth. Therefore, a person with congenital heart disease suffers from a heart defect most, if not all, of their life. Heart defects can range from coarctation of the aorta and pulmonary valve stenosis to septal defects and underdevelopment. There are over 2 million people in the U.S. suffering from CHD. However, very little research exists to treat this disease. Find out more about past and current research and treatment options for CHD here.
Congenital Heart Disease Treatment Options
Current research into treatment options for CHD is limited. It often depends on the type of defect you or your family member has. A person born with a mild defect like a hole located in the heart may improve over time. More significant defects require surgery that helps restore the normal function of the heart.
These interventional procedures are not cures to CHD, however. The person with CHD will still experience limited physical activity and an increased possibility of infection. CHD patients require specialized treatment their whole lives. This is because current defects can cause further issues impacting the heart like rhythm and valve defects.
The Future of Congenital Heart Disease Research
One way you can help with future congenital heart disease research is to participate in studies and surveys. These opportunities are available to those suffering from CHD and their families. They help to compile more information regarding the effects of this disease. This results in better treatment options and resources for current and future patients.
Current studies and surveys include:
- Behavior and Self-Control in the Adolescent Patients with CHD: Adolescents aged 13-19 with congenital heart disease are encouraged to take this study. The study will help adolescents to understand behaviors related to sleep, impulses, and risk-taking.
- Fontan Exercise Survey: This survey explores feedback given to parents and patients from their physicians related to exercise. It focuses specifically on patients with Fontan circulation and their physical activity efforts.
- Psychological Stress Survey: During this survey, patients will anonymously discuss their mental health. It will help researchers determine how much support patients received during the COVID-19 outbreak.
- Social Determinants of Health-Related Quality of Life: Patients under the age of 19 are encouraged to complete this survey. It aids in the research of family adaptation to CHD and Down Syndrome.
- Clinical Trials at National Institutes of Health: All ages of patients can participate in CHD clinical trials. These trials provide future research and aid to those with congenital heart disease.
Unfortunately, there is no true cure for congenital heart disease. The best way to continue the research for CHD is to speak out on your experience. Whether you are a patient or family member, there are many ways to advocate for better CHD research. With the help of those personally impacted by congenital heart disease, scientists can have a better understanding of the disease. Patients are encouraged to join a survey or clinical trial that promotes proper research of congenital heart disease. With better advocacy comes better research and recognition of the effects of CHD.