Pots Eds Life Expectancy. Mar 17, 2025 · Discover the link between Ehlers-Danlos Syndro

Mar 17, 2025 · Discover the link between Ehlers-Danlos Syndrome and POTS, their symptoms, causes, and management tips to improve daily life. I don't fit this category. Typical clinical manifestations are skin hyperelasticity, hypermobility of joints, the fragility of blood vessels, and atrophic scarring. In this post, we’ll break down the risks, possible complications, and what you can do to stay safe and supported. Apr 6, 2023 · The life expectancy of individuals with POTS is generally comparable to that of the general population. [5] Ehlers-Danlos Syndrome (EDS) Eighty percent of people with Ehlers-Danlos Syndrome have POTS (but not the other way around). POTS does impact how the heart beats, but it is more accurately thought of as a neurological disorder rather than a heart condition. Though this does not cure EDS it can prevent further joint damage, meaning an increase in life expectancy. I didn’t want to know what the answer was, but my curiosity outweighed the What is your life expectancy if you have Ehlers-Danlos syndrome? This depends very much on the type of EDS you have. For a small annual fee, you’ll also join a growing community advocating for better care nationwide. Discover your risk. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. Jun 22, 2023 · Explore the research on Ehlers-Danlos syndrome and the genetic mutations that cause some of the subtypes of the disorder. Many of those with the disorder have a normal life expectancy with proper treatment. Hypermobility Ehlers-Danlos Apr 18, 2022 · Autoimmune autonomic ganglionopathy (AAG) is a rare condition affecting the autonomic nervous system (ANS). EDS is a slowly progressive disease. Most people with dysautonomia have a structurally normal heart. We would like to show you a description here but the site won’t allow us. For some, hypermobility decreases over time as we retain less and less water, but that doesn’t always mean things get easier. Mast Cell Activation Syndrome – An Overview Mast Cell Activation Syndrome (MCAS – also known as Mast Cell Activation Disorder) is a relatively unknown condition that may affect some people with Postural Tachycardia Syndrome (PoTS) and is caused by abnormal mast cells or abnormal release of chemicals contained within them. Nov 27, 2025 · The Impact of POTS on Lifespan The most direct answer to the question of longevity is that Postural Orthostatic Tachycardia Syndrome is generally not considered a life-limiting condition. Find out about the symptoms, causes and treatments. Medical consensus indicates that POTS does not reduce overall life expectancy for the vast majority of patients. Nov 13, 2019 · POTS/MCAS patients have a life expectancy of 10 to 15 year depending on getting the symptoms under control. These are not used by all practitioners 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. A POTS diagnosis can feel overwhelming, but you’re not alone. [10] Some forms of EDS result in a normal life expectancy, but those that affect blood vessels generally decrease it. May 3, 2021 · PoTS and Ehlers Danlos Syndrome Combined Many people with Ehlers-Danlos syndrome (EDS) suffer from postural orthostatic tachycardia syndrome, a type of dysautonomia (POTS). Aug 12, 2024 · What is the life expectancy of someone with EDS and POTS? Overall, hypermobile and classic subtypes of EDS do not affect life expectancy, and there have been no deaths attributed Patients with the classical and hypermobility forms of Ehlers-Danlos syndrome have a normal life expectancy. Learn about the symptoms, diagnosis, and treatment. Oct 11, 2024 · The reason for this isn’t clear, but some conditions associated with POTS also primarily affect women, like hypermobile Ehlers-Danlos syndrome and autoimmune diseases. Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Jun 3, 2025 · The hypermobile type of Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) are among a group of conditions characterized by joint hypermobility and other frequently shared clinical features (table 1). PoTS and MCAS are not very well understood and the overlap between Sep 7, 2025 · Ehlers-Danlos syndrome is a group of genetic connective tissue disorders classified in 13 types. Studies confirm that POTS, on its own, does not shorten life expectancy or lead to immediate organ failure. Dysautonomia is a common disease of the autonomic nervous system, which is in charge of the body’s automatic functions such as digestion, heart rate, sweating, and breathing. We retrospectively reviewed … Many people who were previously assigned a diagnosis of EDS-III, EDS-HT, or JHS will meet the criteria for hEDS; some will instead be classed as having Hypermobility Spectrum Disorders (HSD). Aging with Ehlers-Danlos Syndrome (EDS) is a bit of a paradox. It was a simple question filled with fear. I didn’t want to know what the answer was, but my curiosity outweighed the Jul 24, 2025 · The prognosis for Ehlers-Danlos Syndrome is tied to the specific subtype. Ehlers-Danlos Syndrome FAQs Does EDS affect someone’s life expectancy? The answer to this question depends on the type of Ehlers-Danlos syndrome (EDS) a person has. (1) Background: Ehlers–Danlos syndrome is a heterogeneous group of connective tissue disorders causing pain, fatigue, and disabilities; it has several implications for patients who suffer from this disease. For example, for those with the vascular type of Ehlers-Danlos Syndrome, life expectancy may be shortened due to the increased risk of rupturing major arteries. Two years later, she shares her experience coming to terms with a VEDS diagnosis. EDS Info What is Ehlers-Danlos Syndrome? Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that are generally inherited and are varied both in their genetic causes and how they affect the body. Apr 10, 2022 · Vascular Ehlers-Danlos syndrome is a genetic disorder that can cause severe bleeding and internal injuries. EDS symptoms vary by type and range from mildly loose joints to life-threatening complications. (29) For further information on POTS, please visit our POTS medical journal article collection or this informative lecture from Dr. The life expectancy of a patient with Ehlers-Danlos syndrome (EDS) depends on the type of EDS and the patient's symptoms. Dec 23, 2025 · What is the life expectancy of someone with dysautonomia? Most people with dysautonomia live normal, healthy lives. Dysautonomia is when automatic body processes don’t work correctly. Life expectancy can be shortened for those with the Vascular Ehlers-Danlos syndrome due to the possibility of organ and vessel rupture. Functional Medicine Labs to Test for POTS An investigation should be made to search for underlying or contributing conditions such as autoimmunity, Ehlers-Danlos syndrome (28) or mast cell disorders. Satish Raj, noted POTS researcher from Vanderbilt Nov 5, 2019 · We would like to show you a description here but the site won’t allow us. If controled with few flares, the longer the life expectancy. Sometimes practitioners will refer to three subtypes of POTS to help think about the possible mechanism and treatment options. There is currently no known gene for this type of EDS, so diagnosis is made using family history and clinical evaluation. Ehlers-Danlos syndrome (EDS) is a genetic condition that weakens your connective tissue. 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. DePace specializes in the diagnosis and treatment of autonomic nervous system dysfunction (dysautonomia), including POTS, autonomic dysfunction associated with Ehlers-Danlos syndrome (EDS), chronic fatigue, and anxiety-like conditions that are frequently misdiagnosed. 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. Learn about the factors that influence both long-term outcomes and quality of life. While it may not be on everyone's radar, there are actually quite a lot of celebrities who live with EDS. For example, hypermobile Ehlers-Danlos syndrome is abbreviated to hEDS. 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. The major clinical manifestations of EDS Aug 25, 2022 · Diagnosis Extremely loose joints, fragile or stretchy skin, and a family history of Ehlers-Danlos syndrome are often enough to make a diagnosis. [4][5] Surgery may be required to repair the aorta or replace a heart valve. Jul 24, 2025 · The prognosis for Ehlers-Danlos Syndrome is tied to the specific subtype. The new criteria for hEDS are stricter now, intended for a more consistent and targeted identification, in the hopes of aiding a greater understanding of the cause(s) and course (natural history) of the Feb 10, 2022 · Along with mast cell dysfunction, POTS is often associated with genetic connective tissue disorders like Ehlers-Danlos syndrome. POTS is a disorder of the autonomic nervous system. In summary, life expectancy in Ehlers-Danlos Syndrome varies widely depending on the subtype and severity, but with careful management, many patients can enjoy a normal or near-normal lifespan. I have had very short times when my POTS is better but I still have symptoms all the time. May 15, 2014 · This study examines a possible relationship between Ehlers–Danlos Syndrome (EDS) and Postural Tachycardia Syndrome (POTS). We hope the following is a helpful summary. Vascular EDS (vEDS) can be more problematic. How Are ME/CFS and POTS Related? Shared Symptoms and Overlapping Features Both ME/CFS and POTS involve significant autonomic dysfunction, contributing to symptoms such as fatigue, brain fog, dizziness, and orthostatic intolerance. Most types do not greatly affect life expectancy, although they may reduce the quality of life due to pain, fatigue or Aug 10, 2025 · Introduction to EDS and POTS Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) are two chronic conditions that frequently coexist, affecting many aspects of daily life. Ehlers-Danlos Syndrome (EDS) is a rarely diagnosed but surprisingly common genetic disorder that affects connective tissues in the body. She strives to maintain an active lifestyle for her family and enjoys her small-town community. Ehlers-Danlos Syndrome (EDS) Eighty percent of people with Ehlers-Danlos Syndrome have POTS (but not the other way around). Has anyone else been told what We would like to show you a description here but the site won’t allow us. For most types, such as hypermobile EDS (hEDS) and classical EDS (cEDS), life expectancy is generally normal, with patients facing chronic symptoms like pain, joint instability, and skin fragility rather than life-threatening complications. [10]: 7 Additionally, individuals may experience orthostatic hypotension, a drop in blood pressure after standing. People with EDS may have hypermobility of the joints, skin that is easily bruised or stretched, chronic pain, and other symptoms. Ehlers-Danlos Syndrome (EDS) Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affect the body's connective tissues, which provide support and structure to the body's organs and tissues. The ANS controls involuntary body functions. May 24, 2016 · Vascular Ehlers-Danlos syndrome Stickler syndrome Congenital contractural arachnodactyly (Beals syndrome) Familial thoracic aortic aneurysm Congenital bicuspid aortic valve disease with associated aortopathy Loeys-Dietz syndrome Cases without a definite diagnosis often require multidisciplinary discussion. Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) are two chronic, often overlapping conditions that can significantly impact a person’s quality of life. Acquired Chiari malformations are far more common than originally thought. 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. Weakness and vision changes may also be triggered by the upright posture. Explore POTS disease life expectancy, symptom management, and treatment options to enhance quality of life for those affected by this condition. Oct 13, 2023 · Spondylodysplastic EDS Musculocontractural EDS Myopathic EDS Periodontal EDS Classical-like EDS Ehlers-Danlos Syndrome Life Expectancy The effect of EDS on life expectancy depends on the type and severity of the condition. Life expectancy is usually not affected in the other types. Among genetic factors, there is a strong association between POTS and various joint hypermobility disorders, including Ehlers-Danlos syndrome. Jun 23, 2019 · Has anyone seen any articles with concrete data on the impact of hEDS on life expectancy? All I've seen are statements/assumptions that most types of EDS, other than vEDS, shouldn't have any impact on life expectancy. What makes a condition “rare”? A condition is considered rare if it affects less than 1 in 2000 people. Some types, such as familial dysautonomia (FD), are more serious. Postural orthostatic tachycardia syndrome (POTS) is the most common form of dysautonomia, characterized by malfunction of the autonomic nervous system. Guide to Ehlers-Danlos Syndrome life expectancy Guide to Ehlers-Danlos Syndrome life expectancy Ehlers-Danlos Syndrome (EDS) is a group of rare inherited disorders that primarily affect the connective tissues in the body, including skin, joints, and blood vessel walls. Most people with POTS have Type III EDS which is the hypermobility type. Proper Nov 12, 2021 · Many patients with hypermobility spectrum disorder (HSD) and hypermobile EDS (hEDS) either have symptoms of or have been diagnosed with “POTS” or “dysautonomia”. It can affect your skin, joints, muscles, blood vessels, organs and bones. The prevalence of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) Our community may read different commentaries about prevalence figures for EDS and HSD. Figures may be presented in different ways, but they mean the We would like to show you a description here but the site won’t allow us. However, symptoms may become more severe as patients age and joints that have been dislocated multiple times become painful. Learn more today! Jan 5, 2026 · Ehlers-Danlos syndrome (EDS) is a group of rare genetic conditions that affects connective tissue, which provides structure and support to the joints, skin, blood vessels, and internal organs. Jan 6, 2026 · Find out if Postural Orthostatic Tachycardia Syndrome (POTS) affects life expectancy, distinguishing between mortality risk and chronic functional burden. Aug 26, 2016 · “What is the life expectancy for someone with POTS (postural orthostatic tachycardia syndrome)?” This is what I inquired of Google when I received one of my first diagnoses. Oct 19, 2020 · Megan was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in 2018. What is the life expectancy of someone with EDS and POTS? Life expectancy is typically normal for individuals with hypermobile EDS and POTS, provided complications are well-managed. By becoming a member of the Australian POTS Foundation, you’ll gain access to support, practical resources, and discounts on essentials like compression wear and hydration products. Overview of Life Expectancy with EDS Life expectancy in Ehlers-Danlos Syndrome (EDS) varies significantly depending on the specific subtype. 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. [1] Management often includes the use of beta blockers such as propranolol or atenolol, calcium channel blockers, ACE inhibitors, and/or angiotensin receptor blockers ("ARBs"). Oct 16, 2024 · Autism and Ehlers-Danlos syndrome can co-occur. Aug 25, 2022 · Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. There are many etiological co-factors that can cause/attribute to the formation of a Chiari malformation, and most can be linked to these Heritable Disorders of Connective Tissues (HDCTs), including a posterior fossa hypoplasia. It is estimated that up to 70% of HSD/hEDS patients report symptoms consistent with dysautonomia and up to 40% meet diagnostic criteria for POTS. The autonomic nervous system regulates how fast and strong the heart beats. Aug 10, 2025 · Does EDS or POTS Affect Life Expectancy? Most forms of EDS and POTS do not significantly reduce life expectancy, though complications from related conditions require careful management. There are 13 defined types of EDS. The median life expectancy for individuals with vascular EDS is around 48 years. The different types of EDS are no longer described using numbers or Roman numerals; the terms EDS type 3 and EDS type III are no longer used. But these are all assumptions, made by knowledgeable people, but not based on any data. The purpose of this post is to provide a brief overview of the answers to the The life expectancy of a patient with Ehlers-Danlos syndrome (EDS) depends on the type of EDS and the patient's symptoms. Learn more about recognizing and managing this condition. [28]: 17 Oct 8, 2024 · Ehlers Danlos syndrome (EDS) is a rare condition affecting connective tissue that supports skin, joints, blood vessels, and internal organs. Reach out to the Curaleaf team for extra support. Is death from POTS syndrome possible? Learn the real risks, common complications, and how to manage POTS safely with expert care and lifestyle strategies. Genetic tests on a sample of your blood can confirm the diagnosis in rarer forms of Ehlers-Danlos syndrome and help rule out other problems. The range of potential symptoms of POTS is broad in both scope and severity. vEDS is the most serious form because of the risk of sudden organ rupture and dissection, and previously the condition was often diagnosed only after the loss of a loved one. 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. This article provides an in-depth look at EDS and POTS, their Aug 25, 2022 · Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. . [6] A mutation in the norepinephrine transporter gene appears to affect only a tiny portion of POTS patients. Here are ten things to know about Lipedema, including causes, early signs, and treatment options, backed by current research to support better understanding and care. 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) Aging with Ehlers-Danlos Syndrome (EDS) is a bit of a paradox. The typical life expectancy for people with vascular Ehlers-Danlos syndrome is thought to be reduced. 6 days ago · Dr. Written by a GP. It’s usually manageable but not curable. Learn about the overlapping symptoms and causes and when to speak with a doctor here. Learn more here. Aug 21, 2019 · This article provides information on the life expectancy and recovery period for ehlers danlos syndrome or EDS as well as braces, support and yoga for EDS. Let’s be clear— death from POTS syndrome itself is extremely rare. [3] Some have postural orthostatic tachycardia syndrome (POTS), an excessive increase in heart rate after standing up, which can result in fainting. POTS itself is not known to be fatal, and most individuals with POTS do not experience a shortened lifespan due to the condition itself. Jul 20, 2023 · Certain types of dysautonomia may affect a person's life expectancy. 2 days ago · POTS does not cause heart failure or other forms of heart disease. Find answers to frequently asked questions about medical cannabis, consultations, and Curaleaf Clinic services. Oct 7, 2019 · The adaptation required to navigate life with Ehlers-Danlos syndrome, POTS, and narcolepsy continually shapes Kim’s skillsets and broadens her interests. Some EDS sufferers have found relief in physical therapy. Individuals living with POTS experience a diminished quality of life compared to healthy individuals, due to disruptions in various domains such as standing, playing sports, symptom anxiety, and impacts on school, work, or spiritual (religious) domains—these disruptions affect their daily life and overall well-being. Some women report an increase in POTS symptoms just before or during their periods, or during pregnancy. Like ME/CFS, POTS is considered an invisible illness, and its impact on daily life is often underestimated. Dec 11, 2025 · The most common types of EDS (classical, classical-like, and hypermobile) do not greatly affect life expectancy. Joint pain and instability can worsen over time, but treatment can significantly reduce or eliminate pain and improve function and quality of life. Therefore, the sensation of a racing heart, while frightening, does not signify an imminent cardiac event in the context of isolated POTS. Though they are distinct disorders, the significant overlap between them has led researchers to explore their interconnectedness. May 31, 2024 · Lipedema is an often under-recognized condition. Quality medical care and support for Ehlers Danlos Syndrome, Mast Cell Activations Syndrome, POTS, and related conditions We would like to show you a description here but the site won’t allow us. While they are distinct disorders, their frequent coexistence has led researchers to explore the intricate relationship between them. Genetic variants in NOS3 and ADRB2 genes are also associated with POTS. The short answer is: POTS is not typically considered life-threatening, but that doesn’t mean it’s not serious.

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