What is LivingwithCongenitalHeartDefects.org?
LivingwithCongenitalHeartDefects.org is a dedicated patient-to-patient support community for families affected by Congenital Heart Defects. LivingwithCongenitalHeartDefects.org is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Congenital Heart Defects.
Who can join LivingwithCongenitalHeartDefects.org?
If your family has been affected by Congenital heart Defects, consider LivingwithCongenitalHeartDefects.org your second home. LivingwithCongenitalHeartDefects.org as well as the rest of BensFriends.org’s patient communities, is free for members to join.
What are Congenital Heart Defects?
A congenital heart defect is a problem with the structure of the heart. It is present at birth. Congenital heart defects are the most common type of birth defect. The defects can involve the walls of the heart, the valves of the heart, and the arteries and veins near the heart. They can disrupt the normal flow of blood through the heart. The blood flow can slow down, go in the wrong direction or to the wrong place, or be blocked completely.
Doctors use a physical exam and special heart tests to diagnose congenital heart defects. They often find severe defects during pregnancy or soon after birth. Signs and symptoms of severe defects in newborns include
- Rapid breathing
- Cyanosis - a bluish tint to the skin, lips, and fingernails
- Poor blood circulation
Many congenital heart defects cause few or no signs and symptoms. They are often not diagnosed until children are older.
Many children with congenital heart defects don’t need treatment, but others do. Treatment can include medicines, catheter procedures, surgery, and heart transplants. The treatment depends on the type of the defect, how severe it is, and a child’s age, size, and general health.
About Bens Friends
In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.
BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.