Misdiagnosis matters. “Orthostasis” means to stand upright, so orthostatic intolerance The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders. Overview of Life Expectancy with EDS Life expectancy in Ehlers-Danlos Syndrome (EDS) varies significantly depending on the specific subtype. These include Classical EDS (cEDS), Hypermobile EDS (hEDS), Vascular EDS (vEDS), and 10 other rarer subtypes, each defined by specific genetic mutations. The life expectancy for those with Ehlers-Danlos syndrome (EDS) depends on the severity of their disease and the type of EDS they have. The hypermobility spectrum disorders occur when a person has symptomatic joint hypermobility that cannot be explained by other conditions. EDS is a connective tissue condition that is frequently characterized in the media by “loose joints and soft, stretchy skin. There is no up-to-date research to tell us exactly how frequently it occurs. In 2021, The Ehlers-Danlos Society awarded $1million to researchers for molecular studies in hEDS and hypermobility spectrum disorders (HSD). There are 13 different types of EDS, but they do have some clinical features in common. The TNXB gene (tenascin-X protein), is a noncollagenous protein which has been found to be involved in 2 subtypes of EDS. What is skin hyperextensibility? Ehlers-Danlos syndrome (EDS) is a disorder that affects the body's connective tissues. 1, 2 1 day ago · Hypermobile EDS is diagnosed purely by clinical criteria—no genetic test exists for hEDS, and routine laboratory testing is not indicated for diagnosis. Many people go undiagnosed for years, struggling with symptoms that are often dismissed. Is Ehlers-Danlos syndrome really so rare? Hypermobile EDS challenges the perception of EDS as a rare condition due to its estimated prevalence of up to 1 in 500 individuals. Connective tissue is found throughout the body and is an important component of the skin. Additionally, routine dental care has the potential to be compromised as a consequence of some of the systemic features of the disease. Proper Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system. Oct 1, 2018 · The Ehlers-Danlos Syndromes comprise a heterogeneous group of rare monogenic conditions that are characterized by joint hypermobility, skin and vascular fragility and generalized connective tissue friability. Jan 7, 2026 · Among the various subtypes, doctors urge the greatest caution with vascular EDS. Side by side – vascular EDS and hypermobile EDS compared Juliette Harris, Genetic Counsellor, Dr Neeti Ghali, Genetics Consultant & Dr Fleur van Dijk, Genetics Consultant, Ehlers-Danlos National Diagnostic Service (London), in collaboration with the Ehlers-Danlos National Diagnostic service (Sheffield). 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. It is inherited in an autosomal dominant way which means that if a person has vEDS there is a 50% […] May 22, 2020 · It’s Ehlers-Danlos Syndrome (EDS) awareness month! We want to take this opportunity to share crucial differences between the most common form of EDS and Vascular Ehlers-Danlos Syndrome (VEDS). Connective tissues are proteins, such as collagen, that provide elasticity and support to the joints, blood vessels, and skin. Dec 26, 2025 · Ehlersdanlosboy - “Do I have Hypermobile EDS or Classical EDS?” 🤔 hEDS is the most common EDS subtype (≈80–90%), but Classical EDS (cEDS) is frequently missed or misdiagnosed. 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. In general, dental problems in Ehlers-Danlos syndromes are minor compared with the serious systemic manifestations, such as complications of generalized joint hypermobility or life-threatening events (e. Having Ehlers-Danlos syndrome (EDS) does not mean you will have any or all of the following difficulties. The connection between dysautonomia/POTS with Ehlers-Danlos Syndrome, Joint Hypermobility Syndrome, Mast Cell Activation Syndrome, and GI dysfunction. However, the hypermobile type of EDS (and associated hypermobility spectrum disorder) is thought to be common and this toolkit will focus primarily on this type, although many of the clinical signs and symptoms discussed can also appear across the other EDS types. Classical EDS (cEDS) Classical-like EDS (clEDS) Dermatosparaxis EDS (dEDS) Hypermobile EDS (hEDS) Hypermobility Spectrum Disorders (HSD) Kyphoscoliotic EDS (kEDS) Musculocontractural EDS (mcEDS) Cardiovascular Risks And Ehlers-Danlos Syndrome Ehlers-Danlos Syndrome (EDS) affects the body’s connective tissues. From fragile, easily bruised skin to distinctive scarring and hyperextensibility, the skin serves as a critical diagnostic feature in many EDS subtypes. Apr 10, 2022 · Vascular Ehlers-Danlos syndrome is a genetic disorder that can cause severe bleeding and internal injuries. Jan 5, 2026 · Vascular EDS: Linked to COL3A1 mutations; affects blood vessels and carries serious risks. This is because collagen is in all the tissues and structures involved in speech and swallowing, leading to: stretchiness of ligaments, potential muscle fatigue or weakness, and […] Dec 2, 2025 · Ehlers-Danlos syndrome comprises a heterogeneous group of collagen disorders (hereditary connective tissue disease). We hope the following is a helpful summary. 1 Nov 12, 2025 · Vitamin C therapy EDS Vitamin C therapy is recommended for individuals with Ehlers-Danlos Syndrome (EDS), especially the hypermobile type (hEDS), as it is essential for collagen synthesis, which directly impacts joint strength, skin elasticity, wound healing, and vascular integrity. Some people with Vascular Ehlers-Danlos syndrome have a noticeable characteristic appearance, while others don't have any outward signs at all. Hypermobile Ehlers-Danlos Syndrome (hEDS) What is hypermobile Ehlers-Danlos syndrome (hEDS)? What is the prevalence of hEDS? What causes hEDS? Some conditions share joint laxity, while others mimic the pain, fatigue, and instability that can come with hypermobility spectrum disorders or hypermobile Ehlers-Danlos syndrome. Joint hypermobility and/or instability may be a person’s only problem. These tissues are proteins that provide support for the gums, ligaments, organs, blood vessels, and more. Ehlers Danlos syndrome (EDS) is a group of hereditary connective tissue disorder s which manifests clinically with skin hyper-elasticity, hypermobility of joints, atrophic scarring, and fragility of blood vessels. 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. It can also occur as part of a known syndrome, such as types of Ehlers-Danlos syndromes (EDS), Marfan syndrome, or Down syndrome. EDS is classified into several types—classic, hypermobile, vascular, and others—each with specific features but generally sharing common traits of tissue fragility and joint hypermobility. Vascular EDS (vEDS) is a rare type of EDS. All share common features, such as flexibility (hypermobile) and often Learn about Ehlers-Danlos syndromes, including common symptoms, possible causes and when to see a doctor. Healthy Living Community Completed Integrative Medicine for Hypermobility Spectrum Disorder and Ehlers-Danlos Syndromes (IMforHSDandEDS) Ehlers-Danlos Syndrome | Hypermobile EDS (hEDS) | Hypermobility Syndrome | EDS United States Baylor College of Medicine Southern Star Research Pty Ltd. . Considerable interest has arisen concerning the relationship between hereditary connective tissue disorders such as the Ehlers-Danlos syndromes (EDS)/hypermobility spectrum disorders (HSD) and autism, both in terms of their comorbidity as well as Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) are both connective tissue disorders that affect the joints, skin, and other tissues in the body. What is Ehlers-Danlos Syndrome? The Ehlers-Danlos syndromes (EDS) are a group of varied, heritable connective tissue disorders affecting the quality of collagen and other connective tissues in the body. Ehlers Danlos Syndrome, Vascular, Complicated And More Periodontal EDS Hypermobile EDS and hypermobility spectrum disorders Joint hypermobility with its possible musculoskeletal complications is expressed along a spectrum. Comment 'CEDS' below to get the full video ️ What You Need to Know About Classical EDS Classical Ehlers-Danlos syndrome (cEDS) is a heritable connective tissue disorder that causes joint hypermobility, skin hyperextensibility (stretchy skin), and skin fragility. ” Articles about celebrities who reveal they have EDS do not usually The Types of EDS There are several forms of EDS. ‍ Ehlers-Danlos Syndrome (EDS) is a group of hereditary connective tissue disorders characterized by joint hypermobility, skin fragility, and varying degrees of tissue fragility. You can read more about joint hypermobility here. There is no genetic test for hEDS because the cause (s) of hEDS have not been identified. However, the underlying altered collagen opens you up to the possibility. This article will focus on the most common type of Ehlers-Danlos syndrome – the hypermobile type (hEDS, formerly also described as EDS type III or joint hypermobility syndrome), as this is the type that most commonly presents to gastroenterology services. Epidemiology The combined prevalence for all types of Ehlers-Danlos syndrome is estimated to be at least 1 of every 5000 individ There a number of types of EDS, each affecting the body in a different way. The Ehlers-Danlos Syndrome vs Hypermobility Key Facts May 22, 2020 · It’s Ehlers-Danlos Syndrome (EDS) awareness month! We want to take this opportunity to share crucial differences between the most common form of EDS and Vascular Ehlers-Danlos Syndrome (VEDS). These can include joint hypermobility, stretchy skin and tissue fragility. I’m not talking about being flexible - there’s a real distinction between flexibility and hypermobility. What are the facial signs of EDS? Facial signs of Ehlers-Danlos Syndrome are most pronounced in vascular EDS. vascular and organ ruptures). Conditions linked to EDS Many other conditions appear to commonly occur alongside the Ehlers-Danlos syndromes, particularly together with hypermobile EDS (hEDS) or the hypermobility spectrum disorders (HSD). Learn about the link and treatments here. [@{" Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. People with cEDS have fragile skin that is very easily and extensively damaged. Aug 13, 2025 · Learn how to recognize the various overlapping conditions with Ehler-Danlos syndrome and tailor multidisciplinary care to improve patient outcomes. Are there 13 or 14 types of EDS? Hypermobility Spectrum Disorders (HSD) Kyphoscoliotic EDS (kEDS) Musculocontractural EDS (mcEDS) Myopathic EDS (mEDS) Periodontal EDS (pEDS) Spondylodysplastic EDS (spEDS) Vascular EDS (vEDS) Jan 13, 2026 · While the common hypermobile type (hEDS/HSD) can cause pain and fatigue, it is generally considered “benign” regarding life span—meaning patients live a normal length of life. The Ehlers-Danlos Syndrome vs Hypermobility Key Facts Is Ehlers-Danlos an autoimmune disease? Learn about EDS, a genetic disorder affecting collagen production, its 14 subtypes, and potential autoimmune links. Some labs offer an “Ehlers-Danlos syndrome panel” or “connective tissue disorder panel” that includes many of the genes known to cause types of EDS and other heritable connective tissue disorders. Conclusion In summary, both Ehlers-Danlos Syndrome and Hypermobility Syndrome involve joint hypermobility, but they differ in their underlying causes, symptoms, and potential complications. Figures may be presented in different ways, but they mean the Hypermobile Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders are the most common symptomatic joint hypermobility conditions seen in clinical practice. Watch short videos about ehlers danlos syndrome and vascular complications from people around the world. There are different types of dysautonomia with different symptoms. Apr 15, 2021 · Hypermobile Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders are the most common symptomatic joint hypermobility conditions seen in clinical practice. Most of the rare monogenic EDS types can have neurological features, which are often part of major or 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 tissue fragility Hypermobile Ehlers-Danlos Syndrome (hEDS) What is hypermobile Ehlers-Danlos syndrome (hEDS)? hEDS is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. EDS and HSD Diagnosis in Adults Hypermobile Ehlers-Danlos Syndrome Hypermobile EDS (hEDS) is the most common type of EDS. The Beighton score is a clinical tool used to assess joint hypermobility, with a maximum score of 9 based on specific physical tests. Types of Ehlers-Danlos Syndrome Jan 12, 2026 · Step 4: Exclude Vascular EDS (Critical Safety Issue) If not already genetically confirmed as hypermobile EDS, urgently obtain COL3A1 gene testing to exclude vascular EDS, which carries catastrophic risk of arterial/organ rupture 3 Avoid invasive vascular procedures until vascular EDS is definitively excluded 3 Common Pitfalls to Avoid Watch short videos about vascular eds symptoms from people around the world. Rebecca Yarros on EDS, resilience, and tough decisions ️ Rebecca Yarros shares a heartfelt moment from her life as a military spouse and a mom navigating Ehlers-Danlos Syndrome (EDS) in her family. Find out how hEDS is diagnosed and can be managed. Characterised by joint hypermobility and skin findings, there are usually additional features (called Red Flags) in other parts of the body. “Among all the subtypes, vascular EDS (Type IV) is the one that keeps us the most cautious. It is a life-threatening condition that affects the body’s internal structures rather than just the joints. In some cases, hypermobile joints are a feature of connective tissue disorders. 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. Hypermobility EDS (hEDS) is often considered the mildest form in terms of life-threatening complications, as it does not typically involve significant vascular or organ fragility. This article provides a review of the oral and dental aspects of […] Vascular Ehlers-Danlos syndrome is an inherited connective tissue disorder that is caused by defects in collagen. g. Other types, like classical EDS, vascular EDS, and kyphoscoliotic EDS, have specific genetic markers that can be identified through testing. [2] Vascular EDS is caused by mutations to COL3A1. Although joint hypermobility is observed across all types of EDS, not everyone with a type of EDS has joint hypermobility. 2 days ago · Initial Evaluation for Suspected Ehlers-Danlos Syndrome Begin with joint hypermobility assessment using the Beighton scale, followed by targeted skin examination, cardiovascular screening with echocardiogram, and urgent COL3A1 genetic testing if vascular EDS is suspected based on clinical features. Ehlers-Danlos Syndrome (EDS) is one of the most complex conditions affecting the human body because EDS impacts almost every system. What is the trifecta Ehlers-Danlos syndrome? The trifecta refers to the co-occurrence of EDS, POTS, and MCAS, which presents a complex clinical picture due to the overlap of symptoms affecting multiple systems. Vascular EDS is different. One of these, Ehlers-Danlos Syndrome, was classified into several types which have been found to be genetic. Hypermobile Ehlers–Danlos syndrome (hEDS), formerly called EDS Type 3, remains the only EDS variant without a diagnostic DNA test. If you’ve been given a hypermobility diagnosis but something still doesn’t feel quite right, it’s worth taking a closer look. Joint hypermobility is observed throughout the body in most types of EDS, but hypermobility may be limited to the hands and feet in some types. This complexity arises primarily from the pervasive role of connective tissues, which provide structure and support to skin, blood vessels, organs, and joints. Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that impact the structural integrity of collagen throughout the body. These characteristics create a distinctive facial profile that can assist clinicians in identifying vascular EDS. Hypermobile EDS and hypermobility spectrum disorders Hypermobile Ehlers-Danlos syndrome (hEDS), which used to be known as the hypermobility type or type 3, is thought to be the most common genetic connective tissue disorder. 4 days ago · EDS is inherited in various patterns, primarily autosomal dominant and autosomal recessive, depending on the type of EDS. Ehlers-Danlos syndromes (EDS) is an umbrella term describing 14 types, of which 13 are rare and monogenic, with overlapping features of joint hypermobility, skin, and vascular fragility, and generalised connective tissue friability. What is the difference between EDS Type I and Type II? Diagnosis of Hypermobility Syndrome is based on joint flexibility and the presence of related symptoms. However, because all types are labelled "Rare Diseases, " general practitioners receive almost zero training on them. During Pregnancy Symptoms Complications Delivery Postpartum Symptoms of EDS can become worse with puberty, or can begin at puberty Hugon-Rodin 2016 series of 386 women with hypermobile type EDS. Diagnostic Criteria for Hypermobile Distributed by Ehlers-Danlos Syndrome (hEDS) This diagnostic checklist is for doctors across all disciplines to be able to diagnose EDS DOB: DOV: Evaluator: The clinical diagnosis of hypermobile EDS needs the simultaneous presence of all criteria, 1 and 2 and 3. It’s usually manageable but not curable. Among the 13 recognized subtypes, Classical EDS (cEDS), Hypermobile EDS (hEDS), and Vascular EDS (vEDS) are the most commonly encountered in pregnancy. 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. hEDS is diagnosed when an adult meets the diagnostic criteria for hEDS. Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the connective tissues. People with EDS and HSD most commonly have a form of orthostatic intolerance. The Hypermobile type of EDS is where joint hypermobility is the main issue, however, it also impacts a lot of other areas of the body and requires more than just hypermobility in the joints (usually judged by the Beighton Scale) to be diagnosed. Find out more about Hypermobile Ehlers-Danlos Syndrome using our easy to navigate body map. Sometimes EDS, POTS, and other conditions are grouped into a syndrome called the Pentad Super Syndrome. Navigate the body map to learn more about the condition. We get many emails from people suffering themselves or with children suffering from Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome. some of which included: 🧬 Joints that moved well beyond their limits. Can you have both POTS and EDS? 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. 17% developed symptoms of EDS with puberty The HEDGE study will recruit, screen, and undertake genetic sequencing tests on 1000 individuals who have been diagnosed with hypermobile EDS by the most recent clinical criteria established in 2017. Are there 13 or 14 types of EDS? As of the 2017 International Classification, there are 13 recognized subtypes of EDS. Find out about the symptoms, causes and treatments. Vascular, Eds, Edding And More 3. The 2017 EDS International Classification recognises thirteen types of EDS and defines for the first time some related conditions, the hypermobility spectrum disorders (HSD) which have similar symptoms to hypermobile EDS (hEDS). At one end is hypermobility which causes no symptoms, at the other is hypermobile Ehlers-Danlos syndrome, and in between are the hypermobility spectrum disorders. Telltale signs of Vascular EDS vs Hypermobile? Sorry, this post was deleted by the person who originally posted it. These may include large, prominent eyes, a small chin, thin lips, hollowed cheeks, and translucent skin. One of the most important distinguishing features is how the skin behaves and heals. Kyphoscoliotic EDS: Rare; marked by severe spine curvature. What makes a condition “rare”? A condition is considered rare if it affects less than 1 in 2000 people. Oct 8, 2024 · Ehlers Danlos syndrome (EDS) is a rare condition affecting connective tissue that supports skin, joints, blood vessels, and internal organs. How do doctors test for EDS? Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders characterized by a wide range of symptoms, many of which prominently affect the skin. 1 1 day ago · Defective collagen in arterial walls leads to aortic root dilation in 25-33% of hypermobile and classical EDS cases 6, 1 In vascular EDS, arterial walls are prone to spontaneous dissection and rupture even without aneurysm formation 2 The median survival for vascular EDS is only 48 years due to arterial complications 3 Musculoskeletal Despite being diagnosed with hEDS (hypermobile Ehlers-Danlos Syndrome) at the age of 28, I was born with this condition and had symptoms my entire life. Many people with EDS or HSD also have a type of dysautonomia. Some patients with the classic-like form of EDS have deletions of TNXB, while some patients with hypermobility type EDS have mutations in TNXB or haplo-insufficiency. The Types of EDS There are several forms of EDS. SIGNIFICANCE Ehlers-Danlos syndromes are a group of rare inherited connective tissue diseases. There are 13 types of Ehlers-Danlos syndrome, most of which are indeed rare 2. Read about symptoms, diagnosis, management, genetic factors and more. How common is EDS? Ehlers-Danlos syndrome (EDS) is a genetic condition that weakens your connective tissue. It can affect your skin, joints, muscles, blood vessels, organs and bones. However, its symptoms, such as chronic pain and joint instability, can still significantly impact quality of life. Is Ehlers-Danlos Syndrome Genetic? Yes, EDS is caused by variants in genes that produce collagen or proteins that support connective tissue. 1 day ago · Workup for Ehlers-Danlos Syndrome Begin with urgent COL3A1 gene mutation testing if vascular EDS is suspected based on thin translucent skin with visible veins, easy bruising, or family history of arterial rupture, as this life-threatening subtype requires immediate diagnosis and has a median survival of 48 years. While EDS is commonly associated with joint hypermobility, skin fragility, and chronic pain, it also significantly affects the eyes. Managing pregnancy in individuals with EDS requires careful Mar 24, 2024 · If you don’t pass by one point, there is a series of 5 questions and if you answer 2 or more positive you will test positive for hypermobility. Learn about Vascular Ehlers-Danlos Syndrome (vEDS) and it's signs and symptoms. 52% who had prepubertal EDS symptoms (chronic pain, fatigue) became worse with puberty. Introduction The Ehlers-Danlos Syndromes (EDS) give rise to a spectrum of features affecting the mouth that may lessen quality of life. 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. Oct 3, 2025 · Hypermobile EDS (hEDS) is the most common type, but also the trickiest to diagnose because there isn't a specific genetic test for it. Aug 12, 2024 · Ehlers- Danlos syndrome and postural orthostatic tachycardia syndrome (POTS) often occur together. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body. The severity and range of symptoms vary depending on the subtype. We would like to show you a description here but the site won’t allow us. Written by a GP. Signs and symptoms of EDS include stretchy skin, hypermobility, and easy bruising. It is generally considered the most severe form of Ehlers-Danlos syndrome (EDS). The "Rare" Paradox 🦓 While types like Vascular EDS are genuinely ultra-rare, Hypermobile EDS is often considered "rarely diagnosed" rather than rare. Looking through the list of types might seem a little daunting, but for the majority of individuals the diagnosis is most likely to be the Hypermobile type (hEDS) (which we talk about separately, here), followed by the Classical (cEDS), then the Vascular type (vEDS). #eds #hEDS #EDS #ehlersdanlos #ehlersdanlossyndrome #hypermobility #hypermobilityspectrumdisorder #hsd #hypermobileeds #hypermobilejoints #hypermobileehlersdanlossyndrome #hypermobileehlersdanlos Ehlers-Danlos Syndrome (EDS) is characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Doctors can also request testing of specific genes based on the signs and symptoms a person has. Hypermobile EDS currently has no identified genetic cause. However, many other subtypes, such as classical or vascular EDS, remain rare, with prevalence rates significantly lower than 1 in 10,000. 1 day ago · The first critical step is genetic confirmation of EDS subtype, as vascular EDS (Type IV) carries catastrophic surgical risk with median survival of only 48-51 years and requires fundamentally different management than hypermobile EDS. Ehlers-Danlos Syndrome (EDS) is a group of inherited disorders weakening connective tissues, causing symptoms like overly flexible joints, stretchy skin that bruises easily, fragile blood vessels, and poor wound healing, with the most common type being hypermobile EDS (hEDS).

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