: Veds diagnosis Management: Treatment of manifestations: Creation of an organized care team is one of the first tasks to complete upon the initial diagnosis. Methods: This is a multi-institutional cross-sectional retrospective study of individuals with vEDS. Jan 24, 2025 · The remaining patients receive their diagnosis following a serious clinical event that requires medical intervention or due to having certain clinical features and/or a familial history suggestive of vEDS. We provide data on the clinical features of vEDS for 180 patients (full cohort) seen in our service with confirmed molecular diagnoses. I started googeling about my very visible chest veins and the first thing that popped up was veds. During that visit, they will have the following tests: Electrocardiogram (EKG). In 2017, an International Classification aimed to provide clarity to health professionals, patients, and researchers emphasizing the distinction of vascular complications Feb 28, 2023 · The diagnosis of vEDS is challenging and patients often arrive at a diagnosis after a long and protracted path of misdiagnosis or uncertainty. “Our findings emphasise the importance of offering genetic testing in childhood when there is a positive family history of vEDS and/or features suggestive of a potential inherited What can vEDS do to your heart? Vascular EDS (vEDS) affects the cardiovascular system by weakening blood vessels, increasing the risk of: Arterial rupture or aneurysm. Find a doctor knowledgeable about Vascular Ehlers-Danlos Syndrome (VEDS) through The Marfan Foundation's Help & Resource Center, or download a directory. Apr 11, 2021 · Don't get hung up on vEDS unless you have a reason to. Mar 29, 2023 · A vEDS diagnosis is confirmed once a pathogenic variant is found on one allele of COL3A1. How is ventricular septal defect (VSD) diagnosed? Your child will see a pediatric cardiologist (heart doctor). The diagnosis is typically first made based on clinical suspicion. I wish I had known sooner to help my son, but I’m so thankful we know to check for this condition for our generations to come. Our skilled pediatric heart surgeons are sometimes the only ones in the world who can perform a complex heart Aug 15, 2022 · A ventricular septal defect (VSD) is a type of heart defect that often heals on its own. Natural history of VSDs includes spontaneous closure, development of pulmonary hypertension, onset of infundibular obstruction, and progression to aortic insufficiency. Abstract This review addresses the diagnosis and management of ventricular septal defects (VSDs). This study highlights the need for early diagnosis of vEDS. Recently, the results of a study using the b-blocker celiprolol demonstrated a reduction in vascular complications of VEDS. At Stanford Medicine Children’s Health, we collaborate closely with our renowned heart specialists at Betty Irene Moore Children’s Heart Center. She has bruised easily her whole life Jul 25, 2022 · Hello. The syndrome results in aortic and arterial aneurysms and dissections at a young age. Find more information about the clinical trial and enrollment process on The Decentralized Study Evaluating Celiprolol on VEDS Related Events (DiSCOVER). Mar 29, 2023 · The diagnosis of vEDS has improved with advances in genetic testing, however this is most often suspected following an acute event. What are the symptoms found in those affected by Vascular Ehlers-Danlos syndrome, or VEDS? The following are symptoms found in people with Vascular Ehlers-Danlos Syndrome (VEDS): Cardiovascular and arterial characteristics There is no increased risk of valvular or structural cardiac defects. Unlike other EDS subtypes primarily characterized by joint hypermobility and skin elasticity, vEDS is distinguished by its impact on the vascular system, posing a significant risk of life-threatening complications. May 5, 2022 · The term venereal disease is also referred to as sexually transmitted disease (STD) or sexually transmitted infection (STI) that are spread from one person to another through sexual activities. Characteristic arterial and intestinal fragility and generalised severe tissue friability can lead to clinical events from childhood. Oct 19, 2020 · Megan was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in 2018. Jul 11, 2018 · A type of abnormal communication between the main blood vessels in the head, called carotid-cavernous fistula, may be the first manifestation of vascular Ehlers-Danlos syndrome (vEDS) among seemingly healthy young individuals, researchers reported in a recent study. Many babies born with a small ventricular septal defect (VSD) won't need surgery to close the hole. I ruff house and wrestle with my two sons, who tested negative, and I don't bruise. Nov 25, 2024 · Clinical manifestations and diagnosis of ventricular septal defect in adults, covering symptoms, physical findings, and diagnostic approaches. Aug 5, 2024 · Testing and diagnosis for a ventricular septal defect A VSD may be diagnosed before birth using a special ultrasound called a fetal echocardiogram. Jun 16, 2021 · Vascular EDS (vEDS) Hi everyone, Does anyone have any recommendations for private genetic testing in the UK, preferably London based? I've had the query of vEDS hanging over me for a year and a half now, I've had a genetics appointment but I was refused NHS testing because I 'haven't had a major incident', despite meeting loads of the minor Sep 25, 2024 · Hi all, I am very scared of possibly having veds. She will still need to take care of everything she takes care of today without my help. We support patients with simple, easy-to-understand information about vEDS. May 22, 2020 · Knowing the Differences Can Save Lives Confusing VEDS with more common forms of EDS like hEDS is dangerous for those living with VEDS, because the major complications that come with a VEDS diagnosis are not typically associated with a hEDS diagnosis. Sep 7, 2018 · Vascular Ehlers-Danlos syndrome (vEDS) is a rare disorder and 1 of 13 types of EDS. There is an increased risk of coronary artery dissection, and as a result, myocardial infarction (heart VDS by Crystal Instruments The Vibration Diagnostic System (VDS) is a vibration data management system designed specifically for the machinery Predictive Maintenance (PdM) community. Babies who Aug 21, 2025 · Tom was convinced or was maybe convincing himself, that he did not have VEDS, couldn’t have VEDS. The outlook for people with this heart issue is generally very good. The diagnosis of VEDS is made from major and minor clinical criteria and can be confirmed by abnormalities in procollagen production and molecular genetic testing. We highlight a paucity of li … Nov 10, 2021 · Through my diagnosis, I have been able to help other family members. COL3A1 affects multiple organ systems, increasing the risk of blood vessel dissection and rupture, with potentially fatal consequences. This condition is typically caused by mutations in the COL3A1 FIGHT vEDS is a non-profit focused on vascular Ehlers-Danlos ("vEDS"). For patients with vEDS, we help them understand the newest research and most cutting-edge treatment options. Mount Sinai pediatric cardiology specialists are prepared to make an accurate diagnosis and to treat your child with ventricular septal defect (VSD). So the translucent skin and bruising doesn’t get worse as a child ages. Diagnosis is confirmed with molecular testing via skin biopsy or genetic testing for COL3A1 pathogenic variants. Initial diagnostic criteria for EDS overall were initially proposed in 1986. Listen to my vEDS diagnosis story I’m so thankful to my friend and fellow Vascular Ehlers-Danlos warrior, Katie, for sharing vEDS patient stories in her Staying Connect Podcast. Oct 26, 2017 · Are there people with vEDS who have no complications until death? I have very stretchy, translucent skin, mild hypermobility in fingers, very aged hands since I was a kid and protruding veins in my arms and hands, and strange bruises for no reason. Introduction Vascular Ehlers-Danlos syndrome (vEDS, OMIM #130050) is a rare autosomal dominant connective tissue disorder characterised by arterial and intestinal fragility and severe tissue friability, with an estimated prevalence of 1:90,000. Management guidelines are still lacking for vEDS, despite increasing evidence to support specific pregnancy and surgical management [6, 8]. Our approach to Vascular Ehlers-Danlos syndrome (VEDS) Children with vascular Ehlers-Danlos syndrome often struggle with heart problems. Some people may have a more mild form but it is still present from birth. Dec 27, 2024 · As seen in adult cohorts, we anticipate children with vEDS will experience the same protective benefit afforded by early diagnosis and present preliminary data on follow-up in childhood. I could go on and on with thoughts and questions and worries here but I will start with asking, are there mild to severe forms of Veds or is A vEDS diagnosis is confirmed once a pathogenic variant is found on one allele of COL3A1. As such, a person will have symptoms of it at birth. Feb 7, 2025 · VEDS is a genetic disorder so a person is born with mutated genes. I could go on and on with thoughts and questions and worries here but I will start with asking, are there mild to severe forms of Veds or is Feb 7, 2025 · VEDS is a genetic disorder so a person is born with mutated genes. We describe a multi-institutional experience in the diagnosis of vEDS from 2000 to 2015. Clinicians look for a combination of the characteristic physical features, such as thin, translucent skin and the distinctive facial appearance, alongside a history of vascular or organ complications. Spontaneous or trauma-induced tearing of blood vessels, which can result in severe bleeding requiring emergency surgical intervention. Oct 21, 2022 · Ventricular septal defect treatment may include regular health checkups, medications and surgery. Navigate the body map to learn more about the condition. Learn about symptoms, diagnosis, and management at The Cardiovascular Care Group. Dec 6, 2024 · Hi all, I just wanted to post this to maybe help someone who, like me, googles about visible veins and then stumbles across vEDS. Medication may be prescribed to treat any symptoms. I feel that when I am gone, I am gone- there is nothing left for me to deal with. For those without a diagnosis, we help them understand if they have vascular EDS through introducing them to simple testing options. Some small ventricular septal defects (VSDs) close on their own. Oct 5, 2020 · Michelle in the hospital with her first carotid artery dissections, and her back in the gym three years later, before she knew she had VEDS. Oct 18, 2024 · A man, 25, was diagnosed with vEDS after experiencing a ruptured aneurysm years after surgery for bowel perforation, per a case report. Jul 23, 2025 · The journey to a VEDS diagnosis typically begins with a clinical assessment based on observed signs and a patient’s medical history. Yes, there are extremely rare cases of people having vEDS and having no major indications beforehand, but this is so ridiculously rare that if you were to worry about it, then I can give you a MUCH longer list of other things that you should worry about more. My mother, who has VEDS as well, bruises very easily and heals slowly. Video: keeping mentally healthy with vEDS A talk wellbeing and how you can support your mental health, when you have a vEDS diagnosis Arthrochalasia EDS (aEDS) An brief overview of the key information on Arthrochalasia Ehlers-Danlos syndrome (aEDS) Brittle cornea syndrome (BCS) An brief overview of the key information on brittle cornea syndrome . The VSDs are classified on the basis of their size, their number, and their location in the ventricular septum. If the VSD is small, regular health checkups may be all that's needed. If so, I find that Nov 2, 2013 · I am diagnosed with VEDS, but I don't bruise easily. Individuals with vEDS are at high risk for spontaneous rupture of blood vessels, intestines, or other organs, often without prior warning. I'm not sure if that means that my condition isn't as bad as my mothers, or because I'm 17 years younger. Although there is no diagnosed EDS in my fam history, there were events on my mom & dad's history that were concerning. And then you obviously find peers…support groups, stuff like that. This case presents a missed VEDS diagnosis and its impact on the invasive interventions for perspective on this rare but life-threatening condition. Learn about Vascular Ehlers-Danlos Syndrome (VEDS), how it affects the body and who is affected from The VEDS Movement, a division of The Marfan Foundation. What are the signs of Vascular Ehlers-Danlos syndrome, or VEDS? Some people have signs of Vascular Ehlers-Danlos syndrome, or VEDS, with a noticeable characteristic appearance, while others do not have any outward signs of the condition. He had played football, did heavy lifting, worked outdoors climbing and lugging lumber, and never had anything go wrong. The software supports Tri-axial and Single Axis view, and the Vascular Ehlers-Danlos Syndrome is a rare and severe form of Ehlers-Danlos Syndrome, affecting the connective tissues that provide structure and strength to the body's blood vessels and organs. The diagnosis of vEDS has improved with advances in genetic Oct 22, 2020 · Although my VEDS diagnosis has impacted me, the person that this diagnosis has impacted the most is my wife. Two years later, she shares her experience coming to terms with a VEDS diagnosis. Oct 21, 2024 · Vascular Ehlers-Danlos Syndrome (VEDS) is a lethal condition – often misunderstood because it’s named within the Ehlers-Danlos family of conditions that do not generally pose significantly elevated risk of sudden death. An EKG helps doctors learn more about your child’s heart rate and rhythm vEDS causes symptoms that can affect daily life. While initial Vascular Ehlers-Danlos syndrome (vEDS) is a rare disorder and one of 13 types of Ehlers-Danlos syndrome (EDS). When I do bruise, it always heals quickly. The Fetal Heart Program at Children’s Hospital of Philadelphia (CHOP) leads the nation in the evaluation, diagnosis and treatment of fetal heart disease before birth. Apr 10, 2025 · Diagnosis/testing: The diagnosis of vEDS is established in a proband by identification of a heterozygous pathogenic variant in COL3A1. He figured having the diagnosis meant living life as a… Read More Oct 11, 2025 · By age 20, about a quarter of those with a known VEDS diagnosis have had a signiﬁcant complication, such as bowel rupture, arterial rupture, or spontaneous pneumothorax. Nov 1, 2024 · Finding Community with the VEDS Movement and the Marfan Foundation “When I got my genetic diagnosis at Lurie, they were the ones who brought up the Marfan Foundation because my family was looking for a group or a community just to support us along the way and to find research. Diagnosis is confirmed with molecular testing via Vascular Ehlers-Danlos syndrome (VEDS) is a genetic condition that is caused by a change (mutation) in the gene for collagen type 3 (the COL3A1 gene). It may also be due to other events at a young age such as rupture of the large intestine, or issues in pregnancy (such as uterine rupture) (1 Vascular Ehlers-Danlos syndrome (vEDS) is a rare inherited connective tissue disorder predominantly caused by pathogenic COL3A1 variants. We evaluated associations between the syndromic management of VDS and adverse birth outcomes. Additionally, he believed testing was worthless because there was no treatment, no cure. Management guidelines are still lacking for vEDS, despite increasing evidence to support specific Click on the hamburger icon (three lines in the top right corner of the video) to watch other videos in the playlist. May 18, 2023 · The paper also details the clinical features of 180 patients with vEDS who were diagnosed and managed by the team, highlighting features to prompt early diagnosis, and including recommendations for emergency management and management of pregnancy in women and pregnant people with vEDS. Learn more. Learn about treatment options available to help manage and improve quality of life. Aug 27, 2011 · Help! I've read lately, (somewhere) that a positive VEDS diagnosis can be made in spite of negative genetic testing results. Since getting her VEDS diagnosis, Michelle’s geneticist has placed her on a strict regimen of lifting no more than 20 pounds, and has instructed her not to do any isometric exercises. Vascular Ehlers-Danlos Syndrome (vEDS) is a rare and severe subtype of Ehlers-Danlos Syndrome (EDS), a group of inherited disorders affecting connective tissue. Jul 9, 2021 · Vaginal discharge syndrome (VDS) is a common clinical diagnosis during pregnancy in Botswana; it is treated with broad-spectrum antibiotics using a syndromic approach. May 17, 2024 · Understanding Vascular Ehlers-Danlos Syndrome (VEDS), a rare genetic disorder affecting collagen production in the body. Internationally recognised diagnostic criteria guide clinical diagnosis of vEDS, with major criteria outlined as (i) molecularly confirmed family Learn about Vascular Ehlers-Danlos Syndrome (vEDS) and it's signs and symptoms. Someone may suspect vEDS based on your family history, if you either have a known family member with vEDS or have a family history of arterial dissections, aneurysms, or ruptures (1). Some weeks ago I Jun 12, 2025 · Their phase 3 clinical research study tests celiprolol, an investigational medicine that is being evaluated to determine its efficacy in treating Vascular Ehlers Danlos Syndrome (#VEDS). Some of those with VEDS may develop a prematurely aged appearance, especially on the limbs with acrogeria or old appearing hands and feet. It utilizes Crystal Instruments EDM Software’s graphic display capabilities, allowing users to quickly access and compare data for machines. Apr 11, 2021 · Upon learning more about vEDS after my initial clinical hEDS diagnosis, I too was very concerned at the unknown possibility of having vEDS.

Veds diagnosis. Medication may be prescribed to treat any symptoms.