Life expectancy with vascular eds. Prevalence estimates range between 1/50 000 and 1/200 000.
Life expectancy with vascular eds Patients with the classical and hypermobility forms of Ehlers-Danlos syndrome have a normal life expectancy. The life duration of individuals with the kyphoscoliosis shape is also reduced, mainly owing This narrative review aims to summarize current evidence and future perspectives on vEDS medical treatment, with a specific focus on vascular prevention. For instance, the hypermobile type (hEDS), which is the most common form, often has a relatively normal life span. Sep 1, 2024 · The life expectancy of individuals with Ehlers-Danlos Syndrome (EDS) can vary significantly depending on the specific subtype and the severity of the condition. ” Feb 13, 2020 · For example, the life expectancy of people with vascular EDS — a type characterized by fragile arteries, muscles, and internal organs — can be severely reduced, with most patients having a serious medical event by the time they are 40. In conclusion, the life expectancy of children with Ehlers-Danlos Syndrome varies significantly based on the subtype and severity of the disorder. Vascular Ehlers-Danlos syndrome is the most serious form of the condition because it can involve potentially life-threatening complications. Vascular EDS (vEDS) can be more problematic. It is characterized by serious complications such as spontaneous arterial dissections, aneurysms, ruptures, and gastrointestinal perforations, which begin in early adulthood. Reported median life expectancy is 51 years (2). Understand how life expectancy varies significantly across the 13 types, especially the life-threatening vascular EDS. There are several different types of Ehlers-Danlos syndrome, each with its own set of features and complications. 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 1. Typical clinical manifestations are skin hyperelasticity, hypermobility of joints, the fragility of blood vessels, and atrophic scarring. For vascular EDS, the risk of life-threatening vascular events significantly reduces lifespan, with many affected individuals living into their 40s or 50s. Oct 22, 2025 · The life expectancy for people with EDS varies dramatically depending on the specific subtype. For those with hypermobile or classical types, life expectancy may be close to that of the general population, especially with proper management of joint health and skin issues. INTRODUCTION Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by skin hyperextensibility, joint hypermobility, easy bruising, and tissue fragility. The positive aspect? Most types of EDS allow individuals to have a normal lifespan! However, this can vary based on the specific type of EDS and how effectively symptoms are managed. It commonly affects your skin and joints. The effect varies by type, with vascular EDS posing the most significant risks. ” That is a lot of information – here is what I got out of it: “no cure,” “genetic,” “shortened lifespan,” “median life expectancy of 48 years. These include vascular events, described in detail below, and rupture of hollow organs such as bowel and the uterus (in pregnant women). There are 13 defined types of EDS. Historically, 25% of those with genetic testing confirming vascular-type EDS experience a significant medical problem requiring hospitalization by age 20 (∼75% by age 40), and the median life expectancy for those with vascular-type EDS is 48 years (4). There are at least 13 recognized subtypes, with the most common being the hypermobile type (hEDS), classical type (cEDS), and vascular type (vEDS). This comprehensive guide explains how life expectancy varies drastically depending on the specific subtype, particularly the high-risk vascular EDS. Learn about the symptoms, diagnosis, and management of this connective tissue disorder. Vascular Ehlers-Danlos syndrome (vEDS) is a concern because of potentially life-threatening complications. Recent vascular EDS literature estimated the average life expectancy at 51 years(1). Some EDS sufferers have found relief in physical therapy. Sudden vascular events, such as arterial rupture, can occur even in childhood or early adulthood, while some individuals with milder presentations or effective management may live into their 70s. 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. For those with vascular EDS, life expectancy has historically been reduced, with many affected individuals facing life-threatening complications in early adulthood or middle age. In summary, while the life expectancy associated with Ehlers-Danlos Syndrome varies widely depending on the type and severity, advances in medical understanding and care have considerably improved prognosis over recent years. This kind Abstract Vascular Ehlers-Danlos Syndrome (vEDS) is a rare and severe subtype of Ehlers-Danlos Syndrome (EDS), a group of inherited disorders affecting connective tissue. For individuals with the hypermobile and With the Vascular Type EDS, life expectancy is about 40. Thank you! Living with Ehlers-Danlos Syndrome life expectancy Living with Ehlers-Danlos Syndrome (EDS) presents unique challenges that extend into various aspects of health and daily life. Ehlers-Danlos Syndrome (EDS) Ehlers-Danlos syndrome (EDS) is a genetic condition that weakens your body’s connective tissue. EDS symptoms vary by type and range from mildly loose joints to life-threatening complications. Dec 18, 2023 · However, vascular and kyphoscoliosis EDS do carry a reduced life expectancy. This rare genetic disorder leads to the fragility of blood vessels and organs, creating a high risk for life-threatening events. The classical and hypermobile types, which are among the most common, often have a relatively benign course with normal or near-normal life expectancy. Patients with these defects frequently present at a young age with spontaneous arterial complications involving the Several medications can help alleviate symptoms of EDS, such as pain and blood pressure drugs, which reduce joint pain and complications caused by blood vessel weakness. Nov 10, 2025 · Find out if Ehlers-Danlos syndrome impacts life expectancy. In 2017, an International Classification aimed to provide clarity to health professionals, patients, and researchers emphasizing the distinction of vascular complications Feb 17, 2020 · EDS Prognosis Ehlers-Danlos syndrome (EDS) refers to a group of disorders that affect the cartilage and connective tissue — the tissue that gives organs shape and structure. For most forms, especially Classical and Hypermobile EDS, individuals can expect a normal or near-normal lifespan with appropriate management. It is notable for decreased life expectancy and morbidity, including spontaneous vessel rupture. The prognosis for those with EDS depends largely on the specific type they have, as well as the severity of symptoms. Due to its impact on the cardiovascular system, the median life expectancy of people with vascular EDS is 48 years. Patients with vascular EDS have an average life expectancy of 48 years. The prognosis depends on the type of EDS the patient has and how it affects that patient. ”. Learn more here. The median life expectancy for people affected by vascular EDS is 48 years. This is a support sub for those with Ehlers-Danlos syndrome (all types) and HSD—diagnosed or waiting to be diagnosed. The life expectancy of a patient with Ehlers-Danlos syndrome (EDS) depends on the type of EDS and the patient's symptoms. Jul 29, 2021 · It is often associated with a shortened lifespan. In summary, life expectancy in Ehlers-Danlos Syndrome varies widely depending on the type and severity. Oct 28, 2025 · With a median life expectancy estimated at around 51 years, vascular Ehlers-Danlos syndrome (vEDS) is not always fatal in the way a 'terminal' illness is traditionally defined, but it is considered the most serious form of EDS. Prevalence estimates range between 1/50 000 and 1/200 000. Joint pain and instability can worsen over time, but treatment can significantly reduce or eliminate pain and improve function and quality of life. [6] The key factor influencing life expectancy in individuals with EDS is the severity of organ and vascular involvement. 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. “The life expectancy Apr 15, 2019 · The median life expectancy—based on several previous large-scale studies—is 48 to 51 years (2,3). Jul 10, 2021 · If left untreated, vascular Ehlers-Danlos syndrome can be lethal/fatal, especially in Vascular Ehlers-Danlos syndrome. While innovative technologies like gene editing and CRISPR-Cas9 have us optimistic for a vEDS cure, they are still in their infancy. Ehlers-Danlos syndrome typically progress slowly, and the prognosis depends upon the type of EDS and the severity of the condition. YOUR CART What is Vascular Ehlers Danlos Syndrome (VEDS)? VEDS is a rare, single-gene, autosomal dominant disease caused by mutations in the body’s COL3A1 gene, and is the most severe and life-threatening form of Ehlers Danlos Syndrome (EDS). Each subtype presents unique challenges and risks that influence overall life expectancy. Learn about the symptoms, diagnosis, and treatment. Aug 10, 2022 · Ehlers-Danlos syndrome is a group of inherited connective tissue disorders that primarily affects the skin, joints, and blood vessel walls1 but can affect every organ system and result in significant morbidity and mortality. The present review summarizes recent findings that have improved the ability to manage and delineate the natural history of vEDS. Abstract Purpose of review: Vascular Ehlers-Danlos syndrome (vEDS) is the most severe form of EDS, affecting the synthesis of type III collagen. What is prognosis? Disease prognosis is a prediction of the outcome of a disease — the progression of symptoms, and life expectancy. Vascular Ehlers-Danlos syndrome (VEDS) is a genetic condition that makes the arteries and hollow organs prone to tear, due to a mutation in the COL3A1 gene. People with hypermobile Ehlers-Danlos syndrome (hEDS) have a normal life expectancy. Those with hypermobile EDS often enjoy a normal or near-normal lifespan with proper management, whereas individuals with vascular EDS face more significant risks, with a median expectancy in the 50s. Learn how different EDS subtypes impact longevity and quality of life. Dec 5, 2020 · Patients with the classical and hypermobility forms of Ehlers-Danlos syndrome have a normal life expectancy. While the prognosis can be grim in severe forms like vascular EDS, many people with milder types live full, meaningful lives with appropriate medical care. Among affected people diagnosed as the result of a complication, 25% have experienced a significant medical complication by age 20 and more than 80% by age 40. Before participating, please read our rules. A rupture of any of these more major blood arteries has the potential to be life-threatening. Oct 23, 2025 · The life expectancy of EDS patients varies significantly depending on the specific type of Ehlers-Danlos syndrome. This subreddit does not allow medical advice. But with classical or hypermobile types, people can normally live a long life. Two large studies found that the majority of individuals with vascular EDS had some sort of major complication related to the condition by the age of 30. EDS is a group of hereditary connective tissue disorders characterized primarily by hyperflexible joints, fragile skin, and a tendency to bruise easily. There are more than a dozen types of Ehlers-Danlos syndrome, each with its own set of features and complications. The median life expectancy for patients with vascular EDS is 40 to 50 years. EDS is a slowly progressive disease. The only published clinical trial to date demonstrated the benefit of celiprolol on arterial morbimortality. 8,11Death is most frequently secondary to complications associated with vascular and hollow organ rupture, which usually present by the age of 20 years. The lifespan of a patient with kyphoscoliosis EDS is reduced due to two reasons: In conclusion, life expectancy for individuals with Ehlers-Danlos Syndrome varies widely depending on the subtype and individual health factors. As 1 of 6 major types of EDs, vascular EDS (vEDS) is inherited in an autosomal dominant manner and is caused by COL3A1 mutations. What can be done to extend life expectancy in vEDS now? Look no further than Marfan Syndrome, another connective tissue disorder like vEDS. As a result, haploinsufficiency vascular EDS tends to have later onset of complications by almost 15 years and extended life expectancy compared to other vascular EDS patients. Jan 4, 2022 · Although the prognosis for those with hypermobile EDS depends on the type and severity of the condition, hEDS does not shorten life expectancy. Hypermobility Ehlers-Danlos Oct 28, 2025 · For most, EDS is not a terminal illness. Though this does not cure EDS it can prevent further joint damage, meaning an increase in life expectancy. Estimates vary, but the most recent state the disease affects approximately 1 in 50,000 people. Younger EDS sufferers should have hope for a longer life expectancy as modern medicine is advancing at an astounding rate and even these small studies of mice show hope for the future. This is a welcoming place for those affected (or those simply wanting to learn more) to ask questions, share successes and failures, feel less alone, and discuss everyday life. While some forms allow for a near-normal lifespan with proper care, others, notably vascular EDS, pose significant life-threatening risks. Learn about the factors that influence both long-term outcomes and quality of life. For those with Vascular EDS For children with vascular EDS, the prognosis is more guarded, but with advancements in treatment, many are living longer and more active lives than ever before. In 1972, the Marfan Syndrome average Unfortunately vascular type EDS is associated with a reduced life expectancy of between 40 - 48 years, and is linked to significant morbidity in pregnancy for expectant women with this condition. In conclusion, life expectancy for individuals with Ehlers-Danlos Syndrome varies widely based on the subtype and associated risks. The impact of EDS on life expectancy largely depends on the specific type diagnosed. Current scientific investigations focus on understanding how different forms of EDS affect long-term health outcomes. However, even within these types, individuals may face challenges such as recurrent dislocations, chronic pain, and Nov 3, 2025 · Find out the crucial facts about the mortality rate for EDS. The typical life expectancy for people with vascular Ehlers-Danlos syndrome is thought to be reduced. Learn how to navigate the journey with treatment, support, and coping strategies. Feb 23, 2016 · Vascular Ehlers-Danlos syndrome (EDS) is a relatively rare genetic syndrome that occurs owing to disorders in the metabolism of fibrillary collagen. Ehlers-Danlos Syndrome (EDS) is not usually terminal, but for some EDS patients, it can cause limitations. On the other hand, the vascular type (vEDS Apr 23, 2019 · Vascular Ehlers-Danlos syndrome (vEDS) is a rare genetic connective tissue disorder secondary to pathogenic variants within the COL3A1 gene, resulting in exceptional arterial and organ fragility and premature death. This Discover Ehlers-Danlos Syndrome life expectancy insights. Learn how vascular EDS differs from other types and the prognosis. Vascular Ehlers Danlos Syndrome or EDS affected individuals have a medium life expectation of 48 years moreover majority will have a main incident by age forty. Vascular Ehlers-Danlos syndrome (vEDS), previously named type-IV EDS, is a rare genetic disorder of connective tissue, accounting for 5% of all EDS cases (1, 2). The Nov 25, 2025 · What is Ehlers-Danlos syndrome life expectancy? the overall life expectancy of patients with vascular EDS is shortened, largely as a result of vascular rupture, with a median life span of 48 years (range, 6–73 years) Oct 19, 2020 · The median life expectancy for people affected by vascular EDS is 48 years. About 80% of patients with vascular Ehlers-Danlos syndrome will experience a major health event by age 40 and the life expectancy is shortened, with an average age of death of 48 years. Patients with this form usually experience chronic joint pain, dislocations, and fatigue, but serious life-threatening complications are less common. Vascular Ehlers-Danlos syndrome can cause the aorta (the heart’s main artery) to become weak along with other major arteries that supply blood to other parts of the body. About 80% of patients with vascular Ehlers-Danlos syndrome will experience a major health event by age 40 and the life expectancy is shortened, with an Life expectancy ranges from 6 to 73 years, reflecting the variability in the severity of complications and the quality of management. Aug 21, 2019 · The vascular category is usually the harshest form of Ehlers Danlos Syndrome or EDS plus it is frequently connected with a reduced lifespan. Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) often coexist, presenting a complex clinical picture that significantly impacts patients' quality of life. The vascular type is typically a more severe form of EDS and is often associated with a short lifespan. The age of onset of vascular events shows a large variability, but a majority of the initial events occur in the second to third decade of life (4); however, especially in men, increased mortality in adolescence has been noted (3). [10] Some forms of EDS result in a normal life expectancy, but those that affect blood vessels generally decrease it. Keywords: vascular Ehlers–Danlos syndrome, pharmacological treatment, celiprolol, vascular prevention, gene therapy, non-coding RNA Jul 24, 2025 · The prognosis for Ehlers-Danlos Syndrome is tied to the specific subtype. Sep 7, 2025 · Ehlers-Danlos syndrome is a group of genetic connective tissue disorders classified in 13 types. There’s no cure, but your healthcare provider will help you find treatments to manage the symptoms and prevent dangerous complications. Vascular EDS (vEDS) is considered the most serious form of Ehlers-Danlos Syndrome due to the possibility of vascular (blood vessels), arterial, or organ rupture, which can be life-threatening in some 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 symptoms of Vascular EDS? Vascular Ehlers-Danlos syndrome is the most severe form of EDS with symptoms that can be life-threatening. These defects affect the soft connective tissues resulting in abnormalities in the skin, joints, hollow organs, and blood vessels. Unlike vascular EDS, which carries life-threatening risks, hEDS does not typically involve arterial rupture or organ fragility. The median life expectancy for individuals with vascular EDS is around 48 years. About 80% of patients might have a critical event by the age of 40 years. Nov 9, 2025 · For individuals with Ehlers-Danlos syndrome type 3 (now hypermobile EDS), life expectancy is typically normal. What is EDS life expectancy? When someone receives a diagnosis like Ehlers-Danlos Syndrome (EDS), it’s completely normal to have concerns about life expectancy.