{"id":156,"date":"2021-06-11T10:45:18","date_gmt":"2021-06-11T10:45:18","guid":{"rendered":"https:\/\/bf2021.wpengine.com\/?page_id=156"},"modified":"2024-04-12T04:50:46","modified_gmt":"2024-04-12T04:50:46","slug":"welcome-test-page","status":"publish","type":"page","link":"https:\/\/atrialseptaldefectsupport.org\/","title":{"rendered":"Finding support for Congenital Heart Defects? Connect with people like you."},"content":{"rendered":"<p><img fetchpriority=\"high\" decoding=\"async\" class=\"alignnone wp-image-460\" style=\"outline: red dashed 1px;\" title=\"\" src=\"http:\/\/atrialseptaldefectsupport.org\/wp-content\/uploads\/2024\/04\/ASD_Congenital-Heart-Defects-1-300x125.png\" alt=\"A welcome banner for Living With Congenital Heart Defects community featuring a hopeful patient and caregiver\" width=\"758\" height=\"316\" srcset=\"https:\/\/atrialseptaldefectsupport.org\/wp-content\/uploads\/2024\/04\/ASD_Congenital-Heart-Defects-1-300x125.png 300w, https:\/\/atrialseptaldefectsupport.org\/wp-content\/uploads\/2024\/04\/ASD_Congenital-Heart-Defects-1.png 720w\" sizes=\"(max-width: 758px) 100vw, 758px\" \/><\/p>\n<p><strong>Congenital Heart Defects Community<\/strong> is an online patient support community that is powered by <em><strong><a href=\"http:\/\/bensfriends.org\/\" target=\"_blank\" rel=\"noopener\">BensFriends.org<\/a>,<\/strong><\/em> a network of patient support communities for rare diseases. Our mission at <em>Ben\u2019s Friends <\/em>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.<\/p>\n<p><span style=\"font-weight: 400;\">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.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Within the community, we have discussion groups for various types of congenital heart defects:\u00a0 Transposition of Great Arteries, Tetrology of Fallot, Single Ventricle Defects, as well as Aortic and Vessel Defects and Valve Defects.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">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<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400; text-align: left;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Rapid breathing<\/span><\/li>\n<li style=\"font-weight: 400; text-align: left;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Cyanosis &#8211; a bluish tint to the skin, lips, and fingernails<\/span><\/li>\n<li style=\"font-weight: 400; text-align: left;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Fatigue<\/span><\/li>\n<li style=\"font-weight: 400; text-align: left;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Poor blood circulation<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">Many cases of congenital heart disease are diagnosed before a baby is born, when mother gets a prenatal ultrasound.\u00a0 However, it&#8217;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.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">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.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">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 \u201cshould\u201d 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.<\/span><\/p>\n<p style=\"text-align: right;\"><strong><a href=\"http:\/\/atrialseptaldefectsupport.org\/?page_id=198\" target=\"_blank\" rel=\"noopener\">Read More&#8230;<\/a><\/strong><\/p>\n<p><iframe title=\"Rare Disease Patient Communities by BensFriends.org\" width=\"750\" height=\"422\" src=\"https:\/\/www.youtube.com\/embed\/YBeRFnJkleU?list=PLho5Q53hrd4arNr-uM9ToVKSo09Lvg8Cx\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<h2>\u00a0<\/h2>\n<h2 style=\"text-align: left;\"><strong>How is Ben\u2019s Friends Different from Social Media and Other Support Sites?<\/strong><\/h2>\n<p>Our mission at Ben\u2019s 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.<\/p>\n<p>We\u2019re interested in you as a person, and in your struggles as a rare disease patient.\u00a0 But we don\u2019t want to know your name or where you live. We won\u2019t 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.\u00a0 Your information is never shared, and your activity never tracked by adware.<\/p>\n<p>When Ben\u2019s Friends asks for the country and region you live in, that\u2019s 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.\u00a0 That\u2019s important when it comes to giving and getting support. Because we are all about support, and we\u2019re all in this together..\u00a0<\/p>\n<p>Ben\u2019s Friends: <strong>Safe and Supportive.\u00a0<\/strong><br \/>And <strong>anonymous<\/strong> to keep it that way.<\/p>\n<div>\u00a0<\/div>\n<h2 style=\"text-align: left;\"><b>Why create an account?<\/b><\/h2>\n<p><span style=\"font-weight: 400;\">Posts on the different Ben\u2019s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you\u2019re looking for but there are many things you won\u2019t be able to do unless you create an account. These include:<\/span><\/p>\n<p><i><span style=\"font-weight: 400;\">Making your own posts<\/span><\/i><span style=\"font-weight: 400;\">. Although you\u2019re able to find useful information just by reading other members\u2019 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\u2019t be possible unless you create a new user account.<\/span><\/p>\n<p><i><span style=\"font-weight: 400;\">Viewing other members\u2019 profiles<\/span><\/i><span style=\"font-weight: 400;\">. 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\u2019re 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.\u00a0\u00a0<\/span><\/p>\n<p><i><span style=\"font-weight: 400;\">Sending private messages.<\/span><\/i><span style=\"font-weight: 400;\"> 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.<\/span><\/p>\n<p><a href=\"https:\/\/forum.atrialseptaldefectsupport.org\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Click here to create an account and join.<\/span><\/a><\/p>\n<div>\u00a0<\/div>\n<h2 style=\"text-align: left;\"><strong>Latest Discussions<\/strong><\/h2>\n\n<div class=\"feedzy-093ab5eb3018b4fbeb1fa3c4c45f1dae feedzy-rss\"><ul><\/ul> <\/div>","protected":false},"excerpt":{"rendered":"<p>Congenital Heart Defects Community is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. 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