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

  • Ben’s Friends Lead Interns
    by BF_Writer on January 27, 2023

    Sascha Gallardo – February 1, 2021 Keeping Ben’s Friends communities safe and supportive would not be possible without the help of wonderful people who devote their time and skills to meet this objective. We have moderators who take care of their respective communities in various ways such as by screening membership applications and flagging posts that affect the friendly atmosphere we […]

  • Nonprofit SnapCast features Ben Munoz
    by BF_Writer on January 26, 2023

    Sascha Gallardo – February 24, 2021 Nonprofit Snapcast, a podcast that tackles nonprofit management issues, recently featured Ben’s Friends president and co-founder, Ben Munoz. The interview focused specifically on how the organization is able to do more with less. Ben explained that the main reason why the organization thrives even though it has never had large resources is because of the […]

  • Two Disabled Dudes Podcast features Ben Munoz
    by BF_Writer on January 17, 2023

    Sascha Gallardo – March 30, 2021 In Two Disabled Dudes podcast episode number 138, Ben shared inspiring lessons he learned from having an AVM stroke, coping with the loneliness and fear during recovery, and making the most out of life. The episode, titled We Only Have One Life to Liv‪e‬, started with Ben sharing his top 5 favorite books which were grouped into two themes such as overcoming […]

  • How Ben’s Friends moderators work as a team
    by BF_Writer on November 22, 2022

    Sascha Gallardo – September 29, 2021 Around 45,000 individuals make use of Ben’s Friends communities every month. People suffering from a rare disease are looking for information about how others like them cope. Many of them want to learn about the treatments and procedures available, as well as the doctors and clinics recommended by others. There are also parents and other caregivers who […]

  • Upcoming CT scan
    by Lead.Intern on September 13, 2022

    Hi everyone, I want you all to welcome our newest member @Layla! This is her story, in her own words: “I had been having breathing issues since last year but doctors were not able to diagnose me. They thought I had a lung issue. In April of this year I went to the ER with severe upper abdominal pain. They diagnosed me initially as having a heart attack since my Troponin levels were high. After […]

  • You might find a specialist for your rare disease in our Recommend a Doctor pages
    by BF_Writer on August 11, 2022

    Sascha Gallardo – November 1, 2021 Rare disease and chronic illness patients need to consult specialists or doctors who are very familiar with their condition. But especially in the case of rare patients, it’s not that easy to find someone who has many years of experience treating patients who have the same rare disease. Since Ben’s Friends is a network of patient communities, the majority […]