Live Healthy with CHD
Living with congenital heart disease is a lifelong experience. The issues and challenges you may face depend on several factors:
- the type of defect you have
- treatments you have had
- the ongoing care and monitoring you receive
- lifestyle choices
- the development of co-morbid conditions as you age
Sometimes years after their initial treatment, adults with CHD can experience additional CHD related health problems. For some, complications can arise that affect your ability to perform normal work and daily life activities, have children, and may even threaten your life. Additionally, as you age, you can also develop non-CHD related health issues, such as coronary artery disease, diabetes, cancer and other health issues.
"I had two healthy sons who were just four and one when I needed my pulmonary valve replaced in 2012. It was then that I turned to the Heart to Heart Peer Support Program for support. I’m currently working as a swim instructor and keeping up with my two busy sons. ACHA is a wonderful organization and this program was an immense help to me. I am honored to have the opportunity to work with them and give back to others."
In Living with CHD
ACHA Wellness Wednesdays
Learn more about specific ACHD conditions and defects, and the issues that affect your life during our weekly virtual presentations. Our leading experts and advocates cover interesting, diverse, and timely topics in patient-friendly language.
Become your own best advocate
If you are living with adult congenital heart disease, you will need to be your own best advocate. This means learning to be an active participant in your treatment decisions and care. That requires good information and some special skills in...
Learn how to get Social Security Disability Benefits
Are you eligible for Social Security Disability? That can be a tricky question. For many people with congenital heart disease, getting access to Social Security Disability benefits is critical—but it can be difficult to navigate the system. The...
Insurance and Affordable Care Act
Find out how to get the insurance you need for your adult heart condition Quick Resources ACHA Q&A on Insurance: Click here to access a printable PDF Comprehensive glossary of insurance terms: Click here Having Insurance Having good...
Download ACHA Materials
ACHA provides a variety of educational materials for our community. You can download any of the PDFs listed below at no charge. These include our disease related fact sheets, brochures, our Personal Health Passport, Travel Directory and more.
The ACHA Heart to Heart Peer Support Program offers adults with CHD and their family members the opportunity to connect one-on-one with trained peer mentors who provide support, guidance and resources in a positive, supportive way.
You are not alone.
There are over a million adults in the United States living with a congenital heart defect.
- Nearly one in 100 of babies are born with a congenital heart defect.
- There are more adults living with CHD than children.
- Heart murmurs, cyanosis (bluish color to the skin or mucous membranes), clubbing of the finger or toe nails, shortness of breath and excessive fatigue are among the potential symptoms of congenital heart disease in adults.
Put ACHA to work for you by connecting with other adult congenital heart patients, family members and friends and accessing important information and resources. Stay up to date on topics such as medical advances and insurance, and engage with the CHD community.