How to know if you have vascular eds. If you think that you or someone you know may have any type of EDS, please see a doctor who treats patients with connective tissue disorders. I hope you enjoy the results you have to find familial relations and maybe more about your ancestors as well as enjoy their service which they say on their website and literature is to be used for entertainment purposes. Jan 20, 2021 · Read about how Ehlers-Danlos syndrome (EDS) can affect your skin, and suggestions for managing skin problems due to this disease. I didn’t think I was that bad. The COL3A1 gene is the one associated with vascular EDS. It is recommended that people with vEDS have an emergency plan in place and make lifestyle modifications to minimize the risk of injury. Introduction Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. If you have symptoms and/or a family history of vascular EDS, a genetic counselor or a medical geneticist can usually order a genetic test for you. Vascular Ehlers-Danlos syndrome is an inherited connective tissue disorder that is caused by defects in a protein called collagen. GI Issues in EDS: A Comprehensive Guide I. You or someone might slur your or their speech or have trouble choosing the right words. 🫠 When you live with conditions like POTS, MCAS, EDS, vascular compression, and the long list of complications that came after breast cancer and 15 surgeries, you hear a lot of suggestions. • What is Ehlers-Danlos Syndrome? Affected individuals should seek immediate medical attention for sudden and unexplained pain. If someone had listened to me back then, my life wouldn’t have been changed forever when they removed my colon without knowing I had Ehlers-Danlos Syndrome. I know others that seem to have it worse than me. RTHM Redirecting Sep 7, 2025 · Here is what you need to know about Ehlers-Danlos syndrome, including types, symptoms, causes, treatment, and more. May 10, 2024 · Some people have allergies to contrast dye. ” Did you know that 50% of people with Ehlers-Danlos Syndrome (EDS) also have Lipedema? 😳 EDS is a group of connective tissue disorders that can cause hypermobility, chronic pain, fragile skin, and frequent joint dislocations. Apr 10, 2022 · A doctor may begin to suspect vascular Ehlers-Danlos syndrome based on your medical history, physical examination, symptoms or a family history of this condition. The three most common types of EDS are: Hypermobile (hEDS) Classic (cEDS) Vascular (vEDS) There are several types of EDS. . Every day many individuals with vascular EDS are well and fit physically. It is also rare and therefore many health professionals will not have seen someone with this diagnosis. What is the procedure for diagnosing Ehlers-Danlos Syndrome? The following stages are generally used in the process of diagnosing Ehlers-Danlos syndrome: · Physical examination: Your doctor would examine your joints and evaluate the range of motion they display. The most common such problems include hematoma, then intracranial hemorrhage, arterial dissection, arterial aneurism, GI bleeding, and operative hemorrhage or sporadic vascular complications. Let your provider know if you have ever had an allergic reaction to injected contrast dye. This blog is intended to explore the role of collagen in Ehlers-Danlos Syndrome and hypermobility and answer many questions you may have related to the subject. Please, read our blog post on the topic to understand how a service dog might become an invaluable part of your treatment and help you improve your quality of life. What are the main signs and symptoms of vascular EDS? Individuals with vascular EDS may have the following features: What are the main symptoms and signs of vascular EDS? Individuals with vascular EDS may have all or some of the following key symptoms: Tendency to bruise very easily because the blood vessels are more fragile. Find a Doctor Where can I find a doctor who knows about Vascular Ehlers-Danlos syndrome, or VEDS? If you have Vascular Ehlers-Danlos Syndrome (VEDS), it’s important to find a knowledgeable doctor. Vascular EDS (vEDS): This is the most serious subtype, characterized by a risk of arterial and organ rupture due to weakened blood vessels. What to know about Vascular Ehlers-Danlos Syndrome and how to distinguish the condition from other rare conditions October is Vascular Ehlers-Danlos Syndrome (VEDS) Action Month. People with vEDS have translucent skin and are prone to bruising. Share your stories, struggles, successes, and any vEDS related information here! This is not the place to ask whether or not you have vEDS. It is made out of a protein called collagen which is altered in individuals with Ehlers-Danlos Syndrome (EDS). We would like to show you a description here but the site won’t allow us. Many people who do not have vascular EDS can have similar features as many are common in the general population. What other names do people use for vascular Ehlers-Danlos syndrome? Vascular Ehlers-Danlos syndrome is also referred to as vEDS, Ehlers-Danlos syndrome type IV, Sack-Barabas syndrome, and the arterial form of Ehlers-Danlos syndrome. While musculoskeletal symptoms often dominate clinical attention, gastrointestinal (GI) issues are among the most common—and most under-recognized—manifestations of EDS If you have Ehlers-Danlos Syndrome, you may qualify for disability benefits, but there is important information you should know before filing a claim. VEDS-specific care is currently a challenge for the community, as not many providers have expertise in caring for individuals with VEDS. However, people with vascular EDS do have fragile connective tissues, as the condition is caused by faulty type III collagen. Sep 1, 2025 · But more importantly, all the money will be going to the wonderful Annabelle’s Challenge, the largest vascular EDS charity in the UK. Learn about Vascular Ehlers-Danlos Syndrome (vEDS) and it's signs and symptoms. A more severe form of the disorder, called Vascular Ehlers-Danlos syndrome, can cause the walls of your blood vessels, intestines or uterus to rupture. May 17, 2024 · Vascular Ehlers-Danlos Syndrome (VEDS), also known as Ehlers-Danlos Syndrome type IV, is a rare genetic disorder that affects the body's connective tissues, particularly collagen. #chronicillness #chronicillnessawareness #chronicillnesswarrior”. What is vascular Ehlers-Danlos Syndrome? Vascular Ehlers-Danlos Syndrome (vEDS) is a rare disorder that weakens the body’s connective tissue. Often patients will have a degree of bruising at any point in time. If you experience sudden chest, back or abdominal pain, go to a hospital emergency department immediately. Genetic mutations can be hereditary, when parents pass them down to their children, or they may occur randomly when cells are dividing. This article provides a review of the oral and dental aspects of […] Feb 12, 2026 · Unsolicited advice is one exhausting part of living with chronic illness. People with VEDS have fragile blood vessels that can rupture and cause internal bleeding, as well as We would like to show you a description here but the site won’t allow us. I brought it up to my primary care physician and she agreed that it sounds like I have EDS, but she can’t diagnose me. Dec 16, 2025 · Erectile dysfunction self-care: 5 tips to use today Whether you currently suffer from ED or are hoping to sidestep this condition, try these tips to overcome ED for better health and a better sex life. EDS, POTS, Mast Cell Activation Syndrome, hypogammaglobulinemia, anemia, vascular compression in my head and pelvis, chronic idiopathic constipation… and complications I’ve honestly lost track of at this point. The long-term outlook (prognosis) for people with vascular Ehlers-Danlos syndrome is generally poor. 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 causes vascular EDS? Ehlers-Danlos Syndrome (EDS): types & symptoms Ehlers-Danlos syndrome (EDS) is a group of incurable genetic connective tissue conditions that affect collagen — a key building block of joints, skin, blood vessels, and organs. Oct 14, 2021 · If you have EDS but were unaware of it, you might be able to relate. , large eyes, small chin A girl I know who has EDS told me that she suspects that I have it, based on various things I’ve told her about my health/medical issues. Vascular EDS is considered the most serious form of Ehlers-Danlos Syndrome due to the possibility of arterial or organ rupture. g. Due to a lack of functional collagen in th body, a person with VEDS has fragile tissue. Read your insurance plan carefully and keep in mind the features of your child’s condition now, as well as what could become more serious in the future and require additional medication and surgery. We know that day to day, many people with vascular EDS have no problems and live full and enjoyable lives. When patients are referred to a neurosurgeon for a brain aneurysm, many assume open brain surgery is the only option. Emergency Procedures We advise people with vascular EDS to prepare an emergency preparedness kit as a ‘grab and go pack’ and have the following resources to hand and show them to the ambulance crew and hospital staff in the Emergency Department: Emergency information for medical I’m hesitant to confirm or deny if I have vascular EDS or another form that can be confirmed via bloodwork. 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. This is a community for people who have Vascular Ehlers Danlos Syndrome (or Ehlers Danlos Syndrome Type IV), are suspected of having vEDS, and their caretakers, friends and/or family. Vascular EDS Vascular Ehlers Danlos syndrome (vEDS) is a rare disorder, estimated to affect between 1 in 50,000 and 1 in 200,000 people. Dec 2, 2025 · Disability and illnesses don’t check your age first. After reading into it, I realized that I do have a super long list of EDS symptoms and comorbidities. Major ones are vascular involvement. And in EDS and Hypermobility Spectrum Disorders, this system doesn’t Others will have had symptoms of vascular EDS since early on. How to get tested for EDS? ‍ To get tested for EDS, start by consulting your primary care physician, who may refer you to a specialist such as a geneticist, rheumatologist, or a specialty clinic for Ehlers-Danlos Syndrome for further evaluation and testing. In addition, venous complications such as varicose veins and deep vein thrombosis were reported. Key aspects of care focus on monitoring and managing arterial and organ fragility. Start walking. In conclusion, vascular Ehlers-Danlos Syndrome presents with distinctive signs, primarily involving vascular fragility, thin skin, and characteristic facial features. Vascular Ehlers-Danlos (vEDS) impacts arteries and internal organs making them extremely fragile. There is an increased risk of coronary artery dissection, and as a result, myocardial infarction (heart Vascular Ehlers-Danlos Syndrome Vascular Ehlers-Danlos syndrome (VEDS) is a condition that is quite variable. Vascular Ehlers-Danlos Syndrome (VEDS) is a rare genetic disorder that affects the connective tissues in the body, particularly in the blood vessels and organs. Oct 24, 2023 · Ehlers-Danlos Syndrome (EDS) as a group of genetic disorders that affect the connective tissues in the human body. If someone does have a mutation in the COL3A1 gene, the technology will usually find it more than 95% of the time. There have been major advances in the understanding of cEDS in the last 20 years, now making it possible to confirm the diagnosis by genetic testing in the majority of people wth the condition. Aug 25, 2022 · A more severe form of the disorder, called vascular Ehlers-Danlos syndrome, can cause the walls of your blood vessels, intestines or uterus to rupture. Apr 14, 2022 · In many cases, genetic testing is recommended for children who may have the disorder. If you’re fighting to be heard then I see you. Mar 4, 2019 · When you have Ehlers-Danlos syndrome, you know it doesn’t “just” affect your joints or your skin – it can affect just about everything. Type 3 collagen is primarily in tubular structures — so, arteries. It is caused by a mutation in the COL3A1 gene, which produces collagen, a protein that gives strength and elasticity to the tissues. According to one Harvard study, just 30 minutes of walking a day was linked with a 41% drop in risk for ED. Please use other methods of research for that and talk to your doctor Genetic testing for vascular Ehlers-Danlos syndrome (vEDS) is available. It gets its strength from a protein called collagen. They were once considered to be very rare and only seen by rheumatologists. Prevalence estimates range between 1/50 000 and 1/200 000. It is generally considered the most severe form of Ehlers-Danlos syndrome (EDS). Normally, collagen keeps the tissue elastic and able to stretch without tearing. It contains a VEDS Emergency Card, a letter to the emergency department, a fact sheet for EMTs and paramedics, and a checklist to help you prepare other documents you may need to have on hand during an emergency. 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. The following information was provided by Annabelle’s Challenge in the 2022 Winter Edition of Fragile Links. It is generally believed that a calm and easy-going dog is the best fit. EDS is genetic, so if someone in your family has it, you may too. Many people go undiagnosed for years, struggling with symptoms that are often dismissed. 14 hours ago · If you’re wondering, then the Supreme Vascular and Interventional Clinic in Singapore is here to help. May be ignorant but part of me doesn’t want to know if I do have it since there’s nothing I can do about it. Since EDS is a connective tissue disease and connective tissue is found throughout most of the body, it is no wonder that it can also affect the gastrointestinal system. What are the main signs and symptoms of vascular EDS? Individuals with vascular EDS may have the following features: Diagnosis of Vascular Ehlers-Danlos syndrome (VEDS) is based on careful assessment of medical and family history, physical examination, and genetic testing. Sep 13, 2022 · About 2% of non-vascular EDS have vascular complications. Time is critical — call for help immediately. Jul 23, 2025 · 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. Each person’s care plan should address their individual needs. Apr 7, 2025 · People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. If you have an iodine allergy, you may have nausea or vomiting, sneezing, itching, or hives if you get this type of contrast. These situations are eccentric, so they bring about emergency circumstances. Jul 10, 2021 · Yes, you may have EDS without hypermobility, especially in Vascular Ehlers-Danlos Syndrome. What are the main symptoms and signs of vascular EDS? Individuals with vascular EDS may have all or some of the following key symptoms: Tendency to bruise very easily because the blood vessels are more fragile. Jan 29, 2026 · 🌟Comment “EDS” for my how to get diagnosed guide! 🔆Comment “veins” for research on vascular compression ️‍🩹 🤯My specialist told me I have severe Ehlers Danlos syndrome (EDS)… and honestly, that was a shock. Some people have characteristic facial features, thin skin, and tissue fragility Understand Vascular EDS or Ehlers-Danlos Syndrome: symptoms, management, and support resources. Healthcare Coverage When your child has Vascular Ehlers-Danlos Syndrome, you must have appropriate healthcare coverage. Because vascular Ehlers-Danlos syndrome can have serious potential complications in pregnancy, you may want to talk to a genetic counselor before starting a family. Speech. The VEDS Movement has prepared a Vascular Ehlers-Danlos Syndrome Emergency Preparedness Kit to help you develop your emergency plan. Oct 19, 2020 · People with vascular EDS have tissue fragility that puts them at high risk for rupturing of arteries, muscles and internal organs. Additionally, routine dental care has the potential to be compromised as a consequence of some of the systemic features of the disease. Individuals with vEDS are at high risk for spontaneous rupture of blood vessels, intestines, or other organs, often without prior warning. Vascular EDS can be very variable even within the same family. Time. Physical Therapy Physical therapists (also called physiotherapists or PTs) can help people with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) in many ways, depending on the type of pain and other symptoms they have. People are often diagnosed when they have easy and frequent bruising that is not explained by other causes, spontaneous bowel perforations or arterial tears, or because other family members are afected. Getting Diagnosed with Vascular Ehlers-Danlos Syndrome The diagnosis of Vascular Ehlers-Danlos syndrome, or VEDS, is based on careful assessment of the medical and family history and a physical examination that is designed to determine if major features are present. Making a diagnosis of vascular EDS. The Ehlers-Danlos syndromes (EDS) are heritable connective tissue disorders affecting the quality of collagen in every part of the body 1. It’s important to look out for the tell-tale brain aneurysm symptoms, signs, causes, and risk factors. The genetic counselor will receive the results and explain to you what they mean in detail. Telling a healthcare provider when symptoms began can help them know which treatment options are best. Collagen is a crucial protein that provides strength and elasticity to various tissues, including blood vessels, skin, and organs. People with vascular EDS have a risk of fragile blood vessels, which can lead to major complications, including ruptures, dissections or aneurysms. Ehlers-Danlos syndrome, vascular type is caused by genetic mutations, also known as pathogenic variants. Weakened Apr 2, 2019 · What type of Ehlers-Danlos Syndromes (EDS) do you have? If you have Vascular EDS (vEDS), then colonoscopies and other invasive procedures are not recommended unless life-saving. This makes them prone to life-threatening events, including arterial dissections and ruptures, aneurysms, hollow organ ruptures, c May 1, 2016 · So you can use the 3rd-party websites to look at your SNPs, but they won't help you learn if you have EDS or what type you have. I work closely with Annabelle’s Challenge and I know that they will put every penny to good use, supporting individuals and families affected by vascular EDS. Learn about genetic implications and treatment options. Do you ever feel like the rarer types of EDS get overlooked in conversations about Ehlers-Danlos Syndrome? This isn’t about comparing pain or dismissing anyone’s experiences—every type of EDS is real and valid. Find out what causes this condition and how it's treated. Dec 18, 2023 · Ehlers-Danlos syndrome (EDS) affects the body's connective tissues. You Can Make a Difference Give today to make a difference in the lives of people living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders. If you are looking for a comprehensive stroke, heart, and peripheral vascular risk assessment in Singapore, we invite you to reach out and arrange a consultation to receive a clear, personalised evaluation of your overall risk profile. There are 13 types of Ehlers-Danlos syndrome, most of which are indeed rare 2. It's estimated to impact 1 in 90,000 people. Certain risk factors, including Ehlers-Danlos syndrome (EDS) and polycystic kidney disease (PKD), can further weaken blood vessels and raise the likelihood of rupture. Talk to your doctor or a genetic disease specialist about your symptoms: they may be able to diagnose you using genetic testing. Some people with vascular EDS are diagnosed on the basis of subtle signs in their physical appearance, together with their medical history. Nonetheless, many individuals with it have a risk of issues because of delicate blood vessels and empty organs which could burst. Early death of family members due to aortic dissection and cardiovascular complications in you beyond mitral valve issues which can be found in other EDS types as well. If possible, look at your watch, phone or a clock to track when symptoms start. 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. Feb 15, 2022 · Deyle: We know that variants or changes in the COL3A1 gene, type 3 collagen, lead to vascular Ehlers-Danlos syndrome. The Proprioception Connection If you’ve read any of our content on exercise and hypermobility, you’ll know that proprioception is a big deal for those with Ehlers Danlos syndrome. The true prevalence of vascular Ehlers-Danlos syndrome (vEDS) is unknown, due to underdiagnosis of both symptomatic and milder forms of the disease. 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. Mar 21, 2025 · Diagnosing Ehlers-Danlos Syndrome Common symptoms of Ehlers-Danlos Syndrome (EDS) include overly flexible joints and stretchy, fragile skin. Affected individuals should seek immediate medical attention for sudden and unexplained pain. This subtype can have life-threatening complications. What is Vascular Ehlers-Danlos Syndrome (VEDS)? hold the body’s cells and tissues together. Navigate the body map to learn more about the condition. Though some symptoms are the same, each type of EDS is different. Because Ehlers-Danlos syndrome is uncommon, you should seek care from a specialist who is familiar with Ehlers-Danlos and has experience caring for people with this disorder. Connective tissue is like a glue that supports different parts of the body, like the skin, eyes, and heart. In vEDS, patients do not have extreme hypermobility (Very less only of toes and fingers) instead of common facial issues. How do doctors test for EDS? Vascular Ehlers-Danlos Syndrome (vEDS) is a rare and severe subtype of Ehlers-Danlos Syndrome (EDS), a group of inherited disorders affecting connective tissue. Vascular Ehlers-Danlos syndrome (vEDS) is a form of Ehlers-Danlos syndrome (EDS) that is distinguished by a variety of distinctive face characteristics (e. Here’s a detailed Instagram-ready breakdown for Ehlers-Danlos Syndromes (EDS) with trending hashtags: 🧬 What is Ehlers-Danlos Syndrome (EDS)? EDS is a group of genetic connective tissue disorders that affect collagen — the protein that provides structure to skin, joints, blood vessels, and organs. Discover comprehensive insights into Ehlers-Danlos syndrome blood testing, including connective tissue disorder analysis, collagen defect examination, and HEDS screening, as well as related assessments for hypermobility and vascular EDS, providing essential diagnostic information for accurate diagnosis and management. The most common type of contrast given into a vein contains iodine. Introduction The Ehlers-Danlos Syndromes (EDS) give rise to a spectrum of features affecting the mouth that may lessen quality of life. Proprioception is your body’s ability to sense where it is in space, how your joints are positioned, and how much force you’re using. goxm dmmlwaf dihr bdhag jnqyba yfl wxf zpsvmny errk uzjez