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Coping up with CHD: Finding Strength Every Day
Living with a congenital heart defect (CHD) means navigating your own unique heart health journey — from early diagnosis and treatments to daily adjustments and emotional ups and downs. Some days can feel heavy or uncertain, and it’s completely normal to have questions, fears, or moments when you just need …
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What is Congenital Heart Defect Patient Support Community?
Congenital Heart Defect Patient Support Community is a dedicated patient-to-patient support community for families affected by Atrial Septal Defect or Congenital Heart Defect. The Community is powered by BensFriends.org, a network of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with CHD or ASD.
Who Can Join the Congenital Heart Defect Community?
Living with congenital heart defect (CHD) or Atrial Septal Defect can feel overwhelming, but you don’t have to go through it alone. Our online community at AtrialSeptalDefectSupport.org is open to anyone affected by this condition—patients, caregivers, friends, and family members alike.
If you’ve been recently diagnosed, are managing CHD or ASD long-term, or are simply seeking information and understanding, you’ll find a safe, welcoming space here. Caregivers and loved ones are also encouraged to join, as supporting someone with CHD or ASD comes with its own unique challenges.
By joining, you can share your story, ask questions, exchange tips on managing symptoms, and connect with others who truly understand what life with CHD or ASD is like. Together, we learn, support, and empower one another.
What is Congenital Heart Defect?
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.
Within the community, we have discussion groups for various types of congenital heart defects: Transposition of Great Arteries, Tetrology of Fallot, Single Ventricle Defects, as well as Aortic and Vessel Defects and Valve Defects.
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
- Fatigue
- Poor blood circulation
Many cases of congenital heart disease are diagnosed before a baby is born, when mother gets a prenatal ultrasound. However, it’s not always possible to detect congenital heart defects in this way, and mild defects may not cause any problems until later in life. We have many members who did not discover their congenital heart defects until adulthood. There are many narrative discussion threads about their surgical experiences, and their successful recoveries on the community discussion board.
Why create an account to Congenital Heart Defects Support Community?
Ask Questions and Start Your Own Topics
Reading posts can be helpful, but creating an account lets you share your own experiences and questions. You can start new topics and receive responses tailored to your situation. It’s a great way to feel heard, get advice, and help others going through similar challenges. Your voice matters—join the conversation by signing up.
Learn More About Other Members
Creating an account allows you to view member profiles and learn more about their background. You can see if someone is a patient or caregiver, where they’re from, and details about their sleep condition. This helps you find relatable stories and people. It adds a layer of connection you can’t get from reading alone. Start connecting with others now!
Send Private Messages
Sometimes you need a one-on-one conversation. With an account, you can send private messages to other members or moderators when you want to talk more personally. Whether it’s sharing something sensitive or asking a private question, messaging lets you connect in a deeper way. It’s your space to reach out safely and privately. Join and send messages now!
Join the Conversation
Found a post that speaks to you? With an account, you can leave comments, offer encouragement, or share your own insights. Engaging with others helps build a supportive environment where everyone feels seen. By joining the conversation, you become an important part of the community. Don’t just read—connect and be heard.
Find People Like You
Looking for others with similar experiences? Member profiles help you discover people with the same condition or from your area. This can lead to more meaningful conversations and stronger support. Creating an account gives you tools to filter and find those connections. You’re not alone—find someone out there truly understands what you’re facing.
Get the Full Support Experience
Without an account, you’re only seeing part of the community. Creating an account unlocks features that let you post, connect, message, and truly be part of the group. You’ll get more out of every visit and feel more supported along the way. Take that step today—join and experience the full benefit of belonging.
Looking for Support? Find Your Rare Disease Community at Ben’s Friends.
Ben’s Friends is a trusted network of safe, supportive online communities for people living with rare diseases and chronic conditions. Whether you're a patient or caregiver, you’ll find understanding, connection, and encouragement. Visit BensFriends.org and discover a community that truly gets it.
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