Vascular eds treatment There are several types of EDS. By pursuing the most innovative research, educating the medical community, general public and affected individuals, and providing support to patients, families, and caregivers, we can charge forward and improve the outcomes for those living with VEDS. g. vEDS may also cause a variet Mar 6, 2025 · Learn about diagnosing and treating Ehlers-Danlos syndrome, an 'invisible' disease. Individuals with vEDS are at high risk for spontaneous rupture of blood vessels, intestines, or other organs, often without prior warning. To date, 21 genes have been associated with EDS; however, the genetic basis of the most prevalent subtype—hypermobile EDS—remains unknown [1 – 3]. A 'normal' blood pressure is 120/80 mmHg (2). Whenever possible, the genetic molecular defect should be identified. The purpose of this study was to review the surgical management and clinical outcomes Vascular Ehlers-Danlos Syndrome (vEDS) is a rare and severe subtype of Ehlers-Danlos Syndrome (EDS), a group of inherited disorders affecting connective tissue. It can vary greatly in severity, and can affect the skin, blood vessels and joints. Aug 24, 2025 · Vascular Ehlers-Danlos syndrome is a more severe form of Ehlers-Danlos syndrome, which is a genetic disorder that affects the connective tissues, such as the skin, blood vessel walls, and joints. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the skin, bones, blood vessels, and other organs. Vascular EDS (vEDS) is an inherited connective tissue disorder caused by pathogenic variants in the COL3A1 gene. Two years later, she shares her experience coming to terms with a VEDS diagnosis. It will depend on your physician preference and if you are having any symptoms from your blood pressure ("BP") or your BP Ehlers-Danlos syndromes (EDS) are a group of hereditary connective tissue disorders (HCTDs) with considerable clinical and genetic heterogeneity. By targeting the root causes of tissue fragility, stem cell therapy provides a new avenue for treatment, one that focuses on regeneration, stability, and improved quality of life. Regular follow-up care and monitoring at a vascular center, such as Mayo Clinic, also is valuable. 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 The information in this article is based on the experience and expertise of the UK's EDS National Diagnostic Service. There are 13 different types of EDS, but they do have some clinical features in common. Objective: Vascular Ehlers-Danlos syndrome (vEDS) is a rare monogenetic disease caused by pathogenic variants in procollagen 3A1. About 1 in 5,000 people has EDS. This narrative review aims to summarize current evidence and future perspectives on vEDS medical treatment, with a specific focus on vascular prevention. Abstract Ehlers-Danlos syndrome (EDS, ORPHA98249) comprises a group of clinically and genetically heterogeneous heritable connective tissue disorders, chiefly characterized by joint hypermobility and instability, skin texture anomalies, and vascular and soft tissue fragility. Keywords: vascular Ehlers–Danlos syndrome, pharmacological treatment, celiprolol, vascular prevention, gene therapy, non-coding RNA 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 · Ehlers-Danlos syndrome can be a devastating disease in patients who are severely affected — a situation made worse by the current scarcity of treatment options. Ehlers-Danlos syndrome (EDS) id a rare genetic disorder affecting connective tissue. . Understand Vascular EDS or Ehlers-Danlos Syndrome: symptoms, management, and support resources. Your physician may have different goals for a low-normal blood pressure. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs There has been debate regarding the safety of performing elective procedures in patients with vascular manifestations associated with Ehlers-Danlos syndrome (EDS). Associated tissue fragility What Is Vascular Ehlers-Danlos Syndrome? Ehlers-Danlos syndrome (EDS) is a heterogeneous group of inherited con-nective tissue disorders. Bowel rupture is uncommon in early childhood, has been described in late childhood, and continues to be a risk into adulthood. Invasive methods should be used only when necessary, primarily to save the patients' life. The VEDS Movement mission is to save lives and improve the quality of life of individuals with Vascular Ehlers-Danlos Syndrome (VEDS). 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. We would like to show you a description here but the site won’t allow us. A randomised controlled trial, the Beta-Blockers in Ehlers-Danlos Syndrome Treatment (BBEST) trial, reported a significant protective effect of the beta blocker celiprolol. He and his team at the Center provide care for the numerous complications of EDS: joint pain, headaches, POTS, GI problems, and mast cell activation syndrome. It is inherited in an autosomal dominant way which means that if a person has vEDS there is a 50% […] Therefore, the type of surveillance and the recommended intervals for imaging for people with Vascular Ehlers-Danlos Syndrome (VEDS) vary from no imaging to imaging every 18 months. 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. Medications Your doctor may prescribe drugs to help you control: Pain. Vascular Ehlers-Danlos syndrome can cause the walls of blood vessels, the intestines, or the uterus to rupture. Stronger Vascular Ehlers-Danlos Syndrome (vEDS) is a rare and severe subtype of Ehlers-Danlos Syndrome (EDS), a group of inherited disorders afecing connective tissue. Sep 23, 2024 · INTRODUCTION The Ehlers-Danlos syndromes (EDS) are a group of conditions that are characterized by one or more of several common features: skin hyperextensibility, joint hypermobility, and tissue fragility. It is generally considered the most severe form of Ehlers-Danlos syndrome (EDS). Vascular EDS (vEDS) is an inherited connective tissue disorder caused by Ehlers-Danlos syndrome (EDS) is a disorder that affects the body's connective tissues. Apr 14, 2022 · In some cases, vascular Ehlers-Danlos can weaken the walls of the large intestine or uterus, too. Sep 23, 2011 · Ehlers–Danlos syndrome (EDS) is a hereditary connective tissue disorder caused by mutations in genes involved with collagen matrix formation that results in weakened blood vessels. Vascular Ehlers-Danlos syndrome (EDSv) can present with life-threatening surgical complications. Apr 10, 2022 · Vascular Ehlers-Danlos syndrome is a genetic disorder that can cause severe bleeding and internal injuries. “The life expectancy The majority of medical management in vascular Ehlers-Danlos Syndrome has focused on maintaining blood pressure in the normal or low-normal range (1). Mar 29, 2023 · The UK National Diagnostic Service for Ehlers-Danlos Syndromes (EDS) was established in 2009 for the rare types of EDS. It commonly affects your skin and joints. Vascular Ehlers-Danlos syndrome is an inherited connective tissue disorder that is caused by defects in a protein called collagen. Get expert advice from UT Southwestern Medical Center men's and women's health specialists. FIGHT vEDS is a non-profit organization dedicated to fighting and finding a treatment for vascular Ehlers-Danlos Syndrome. When imaging is conducted and abnormalities are identified, monitoring is important to determine if treatment is appropriate. 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. Associated Aug 25, 2022 · Treatment There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications. Learn about the symptoms, diagnosis, and treatment. Sep 7, 2025 · Ehlers-Danlos syndrome is a group of genetic connective tissue disorders classified in 13 types. Dec 10, 2024 · Comprehensive guide on managing Ehlers-Danlos syndromes, including patient education, care coordination, and specialist referrals based on type and severity. Despite its growing recognition and the frequency with which it is diagnosed, there Living with Ehlers-Danlos Syndrome (EDS) often means living with a complex web of symptoms. Apr 15, 2019 · One important study in this respect is the BBEST (Beta-Blockers in Ehlers-Danlos Syndrome Treatment) trial, (5) a multicenter, open-label, randomized study that suggested that treatment of individuals with vascular EDS with celiprolol extends the time to vascular complications compared with those not treated. It’s usually manageable but not curable. As many tissues can be involved, the underlying molecular defect can manifest itself in many organs and with varying Vascular Ehlers-Danlos syndrome (EDS) is a rare connective tissue disorder with serious hemorrhagic consequences. Learn how regenerative treatments can improve joint stability and pain. Find a doctor knowledgeable about Vascular Ehlers-Danlos Syndrome (VEDS) through The Marfan Foundation's Help & Resource Center, or download a directory. Bowel rupture ultimately affects about 25–30% of individuals but rarely leads to death. At Mayo Clinic, your team may include specialists in medical genetics and physical medicine and rehabilitation — as well as vascular, cardiovascular, neurological, orthopedic and pediatric surgeons, if necessary. Arterial rupture is the most serious clinical manifestation. The aim was to study the outcome We CARE For What is vEDS? vEDS // VASCULAR EHLERS-DANLOS SYNDROME a genetic disorder that causes connective tissue to be fragile, particularly in the blood vessels and organs. Medications for Vascular Ehlers-Danlos Syndrome (vEDS) Many individuals with EDS, especially those with vascular EDS (vEDS), are at risk of cardiovascular complications such as high blood pressure, arterial rupture, or aneurysms. 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. Nov 25, 2025 · Ehlers-Danlos syndrome (EDS) is a heterogeneous group of inherited connective tissue disorders characterized by hyperelastic skin, hypermobile joints, and vascular and other tissue fragility the 2017 classification describes 13 distinct EDS subtypes (Malfait, 2017) inheritance pattern varies by EDS subtype mutations in at least 20 genes have been identified (e. While the genetic 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. Most of the patients sent for vascular surgery are urgent cases, such as aortic dissection, aortic aneurysm rupture, and vascular tear. Dr. The results o … Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that weaken connective tissues. It is caused by a gene mutation affecting a major protein, which causes weakness in vessel walls and hollow organs. The article describes the case of a patient with EDSv who developed total abdominal wound dehiscence and multiple enterocutaneous fistulas. Resources for caring for patients with Vascular Ehlers-Danlos Syndrome (VEDS), including diagnostic tools and reference sheets. These can include joint hypermobility, stretchy skin and tissue fragility. Vascular Ehlers-Danlos syndrome predisposes young adults to a high risk of digestive tract events which can be life-threatening. Joint pain, fatigue, gastrointestinal issues, and brain fog are all common — but for many people with EDS, one of the most debilitating symptoms is frequent, intense migraines. The UK National Diagnostic Service for Ehlers-Danlos Syndromes (EDS) was established in 2009 for the rare types of EDS. Most experience on treatment is based on case reports and small case series. Vascular Ehlers-Danlos syndrome (EDS) is the most life-threatening type. Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the connective tissues of the body. Saperstein has diagnosed and treated over 500 patients with EDS. Endovascular therapy on patients with EDS is fraught with concerns of vessel dissection and access site complications. This information is intended for people who have been recently diagnosed with vascular Ehlers-Danlos syndrome (vEDS) and their friends and relatives. These patients are best managed by multidisciplinary teams of interventionalists, cardiologists, and geneticists in tertiary centers with expertise in managing connective tissue dis … Vascular Ehlers-Danlos Syndrome, one of the more severe forms, can even affect blood vessels, leading to life-threatening complications. Characterized by articular hypermobility, skin exten-sibility and tissue fragility, individuals with EDS have a defect in their connec-tive tissue. The conditions are distinguished by family history and clinical criteria, including the degree and nature of involvement of skin, joints, skeleton, and vasculature [1]. Treatment and management recommendations for those with Vascular Ehlers-Danlos Syndrome, or VEDS, including circumstances to avoid and medications. Learn about diagnosis, symptoms and treatment from Froedtert & MCW specialists. Vascular Ehlers-Danlos syndrome patients may be prescribed medications to minimize baseline vascular stress and help manage bowel irregularity. Read about symptoms, diagnosis, management, genetic factors and more. Ehlers-Danlos Syndrome (EDS) Ehlers-Danlos syndrome (EDS) is a genetic condition that weakens your body’s connective tissue. Vascular Ehlers Danlos syndrome (vEDS) is a rare disorder, estimated to affect between 1 in 50,000 and 1 in 200,000 people. Significant advancements in genetic testing have contributed to understanding of the cause, management, and treatment of vascular connective tissue disorders, which include Ehlers-Danlos syndrome, Marfan syndrome, and Loeys-Dietz syndrome. Over-the-counter pain relievers — such as acetaminophen (Tylenol, others) ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve) — are the mainstay of treatment. Vascular EDS (vEDS) is a rare type of EDS. Vascular EDS (vEDS) is an inherited connective tissue disorder caused by pathogenic variants in the gene. Associated tissue fragility affects multiple organ systems, increas … Sep 13, 2022 · Therapeutic measures are limited to the treatment of symptoms in vascular EDS. Vascular EDS is a serious disorder with high mortality, which does not seem to have been influenced by new treatment methods. Conclusion Stem cells for Ehlers-Danlos Syndrome are transforming how we view and manage this complex connective tissue disorder. Learn about genetic implications and treatment options. , COL5A1 or COL5A2 mutations Oct 19, 2020 · Megan was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in 2018. Aug 25, 2022 · Ehlers-Danlos syndrome affects many different body systems, so it's important to have different specialists involved in your care. There’s no cure, but your healthcare provider will help you find treatments to manage the symptoms and prevent dangerous complications. Explore current clinical evidence on stem cell therapy, PRP, and prolotherapy for Ehlers‑Danlos Syndrome. Ehlers-Danlos Syndrome Specialists in Texas Ehlers-Danlos Syndrome (EDS) is increasingly recognized within the medical community as a genetic disorder that significantly impacts the body's connective tissues, which are crucial for providing support and elasticity to the skin, joints, and vascular structures. Vascular EDS (vEDS) is an inherited connective tissue disorder caused by The UK National Diagnostic Service for Ehlers-Danlos Syndromes (EDS) was established in 2009 for the rare types of EDS. They can range from mild to life-threatening. Traditional Treatments for Ehlers-Danlos Syndrome Traditionally, treatment for Ehlers-Danlos Syndrome has focused on managing symptoms rather than addressing the underlying causes. Although it's true that Ehlers-Danlos syndrome cannot be cured, physical therapy often can help manage symptoms and prevent complications. There is only one evidence based preventative medication called Celiprolol, which reduces heart rate and pulsatile pressures if there is high blood pressure and can decrease continuous and pulsatile mechanical stress on collagen fiber within the arterial wall. New evidence-based treatments have greatly expanded the medical and surgical management options for patients with EDS. May 18, 2023 · The Ehlers-Danlos Syndrome National Diagnostic Service in Sheffield, UK, has published a new paper on vascular Ehlers-Danlos syndrome (vEDS) diagnosis and management, in the European Journal of Human Genetics: Diagnosis and management of vascular Ehlers-Danlos syndrome: Experience of the UK national diagnostic service, Sheffield. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of orga s.