Welcome Members!

Welcome to our Living With Congenital Heart Defects Community (Formerly “Atrial Septal Defects” Community).

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

This is an online support group for patients, friends and families affected by Congenital Heart Defects (formerly Atrial Septal 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.

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.

Living With Congenital Heart Defects is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But Living With Congenital Heart Defects is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.

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How is Ben’s Friends Different from Social Media and Other Support Sites?

 

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

 

Why create an account?

 

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

 

Latest Discussions

  • A Word about Covid Vaccines
    by Bens_Friends on January 3, 2022

    “Whether or not you choose to get vaccinated is a personal choice. Somehow, someway choice has become a political statement. Ben’s Friends Communities are for peer to peer support, not politics. While Covid is a concern of our membership, we are not social media. Anytime discussion veers to politics, religion, or off topic, that discussion will be moderate either moved to a private discussion […]

  • Device failure 3 months after closure?
    by gillytech on January 2, 2022

    I had my 19mm ASD closed with a 37mm Gore Cardioform device at UCLA by Dr. Aboulhosn in September of last year. As of about a week ago I have gotten my shortness of breath back although not quite as bad as before. I feel like I can’t get in a deep breath and sigh a lot throughout the day. Also some upper back pain and small pains in the chest. My pulse ox blood oxygen percentage hovers between […]

  • Looking for hospitals in Australia that offers adult ASD repair
    by Nohname98 on December 12, 2021

    Hi I’m looking for suggestions on hospitals in Australia that offer ASD repair using minimal invasive surgery or through the use of device closure. I looked through the internet but if anyone has had the procedure done in Australia any information on this would be helpful.I’m from a small island and Australia is the closest place to me for treatment. Grateful for any suggestions because I am […]

  • Parent of newly diagnosed 6 year old
    by Lead.Intern on December 5, 2021

    @trust_level_0 Hello all, Elizabeth (@Elizclwtr), our newest member, is the mother of a 6 year old daughter who has a 7-8 mm ASD. She is weighing the cath procedure as an option, however is feeling anxious about the metal side effects. If anyone has any insights, reassurance, etc. your words will be very very welcome!! Elizabeth, I did do a quick search for the word “Metal”, and a lot of […]

  • Check out the Ben’s Friends Blog
    by Bens_Friends on November 30, 2021

    Be sure and check out our Blog for the latest on Ben’s friends patient communities and the Disease/Conditions that we provide patient support for: https://blog.bensfriends.org/ 1 post – 1 participant Read full topic

  • Screen names – Ben’s Friends values your privacy
    by Modsupport on November 29, 2021

    Some of you may have noticed that your screen name now appears different. If you had your full name as your screen name, I changed it in order to better protect your privacy. If the shortened name is not to your liking, please private message me by clicking on the ModSupport icon and let me know what you would rather your name be, and I’ll change it. Sharon from ModSupport @trust_level_0 […]