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A 19-Year-Old Man With Relapsing Bilateral Pneumothorax, Hemoptysis, and Intrapulmonary Cavitary Lesions Diagnosed With Vascular Ehlers-Danlos Syndrome and a Novel Missense Mutation in COL3A1


A 19-year-old sportsman experienced a right-sided pneumothorax and hemoptysis after having had an intermittent cough and blood-tinged sputum for 2 months. A chest CT scan revealed small cavitary lesions in both lungs. The relapsing pneumothorax was treated with a chest tube twice, as well as surgically after the second relapse. Two months after surgery, the patient developed a cough, fever, and high C-reactive protein levels. At that time, large...

A Case of Ehlers-Danlos Disease

British medical journal

Although during the last few years a number of cases showing the syndrome described by Ehlers in 1901 and Danlos in 1908 have been recorded, a further case which has come to our notice seems of sufficient interest to merit publication. The classical features of this disease are: (1) abnormal elasticity of the skin; (2) friability of the skin and blood vessels, resulting in large subcutaneous haematomata and gaping wounds from trivial injuries;...

A Case of Mosaic Ehlers-Danlos Syndrome

Australasian Journal of Dermatology

Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders. The clinical manifestations are heterogeneous and usually generalised. We present a case of mosaic EDS, an extremely rare variant. Our patient presented with a single localised patch of EDS affecting her upper left thigh.

A Case Report of Stereotactic Radiosurgery in a Patient with Ehlers-Danlos syndrome

Reports of Practical Oncology and Radiotherapy

In this report, we outline the case of a patient who has Ehlers-Danlos Syndrome (EDS) who received two courses of CyberKnife stereotactic radiosurgery (SRS) for metastatic non-small cell lung cancer. Patients with EDS have increased blood vessel fragility, and therefore are subject to increased risk of bleeding. There are no published data regarding the risks of hemorrhage associated with SRS for intracranial metastases in this patient population...

A Double-Blind, Randomized, Placebo-Controlled, Parallel Group Study of THC/CBD Spray in Peripheral Neuropathic Pain Treatment

European Journal of Pain

BACKGROUND: Peripheral neuropathic pain (PNP) associated with allodynia poses a significant clinical challenge. The efficacy of Δ(9) -tetrahydrocannabinol/cannabidiol (THC/CBD) oromucosal spray, a novel cannabinoid formulation, was investigated in this 15-week randomized, double-blind, placebo-controlled parallel group study. METHODS: In total, 303 patients with PNP associated with allodynia were screened;...

A Framework for the Classification of Joint Hypermobility and Related Conditions

American Journal of Medical Genetics

In the last decade, growing attention has been placed on joint hypermobility and related disorders. The new nosology for Ehlers–Danlos syndrome (EDS), the best-known and probably the most common of the disorders featuring joint hypermobility, identifies more than 20 different types of EDS, and highlights the need for a single set of criteria to substitute the previous ones for the overlapping EDS hypermobility type and joint hypermobility syndr...

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Guideline Summary: Aortic Valve and Ascending Aorta Guidelines for Management and Quality Measures. [Society of Thoracic Surgeons]

The Annals of Thoracic Surgery

Guideline Objective(s): -To outline pros and cons of treatment options -To outline areas where further research is needed, potentially from updated Society of Thoracic Surgeons (STS) data collection variables as there are few randomized trials that give more absolute answers to questions -To provide technical guidelines for aortic valve and aortic surgery -To provide background for recommended quality measures and suggest quality measures -T...

Positional Magnetic Resonance Imaging for People with Ehlers-Danlos Syndrome or Suspected Craniovertebral or Cervical Spine Abnormalities

Health Quality Ontario

Given the current absence of evidence for the utility of positional magnetic resonance imaging (pMRI), OHTAC recommends that pMRI not be funded or considered generally accepted practice for the diagnosis or management of (a) spinal or craniovertebral abnormalities among individuals with Ehlers-Danlos Syndrome, or (b) major craniovertebral or cervical spine abnormalities among symptomatic individuals. Ehlers-Danlos syndrome and other congenital...

15 Things Adults With Ehlers-Danlos Syndrome Wish Their Parents Had Known

The Mighty

Few people are familiar with Ehlers-Danlos syndrome (EDS) before knowing someone with the condition, so many people with EDS grew up with parents who didn’t fully understand the cause of their child’s pain and co-morbid conditions. Unfortunately, parents aren’t typically taught about the signs of EDS, so dislocations may be mistaken for “clumsiness,” and chronic pain may be innocently seen as “growing pains,” when nothing could be f...

17 Things People With Ehlers-Danlos Syndrome Wish Their Doctors Knew

The Mighty

Though people with Ehlers-Danlos syndrome experience a wide array of symptoms and may present the condition in many different ways, most EDS “zebras” have one thing in common: frustrating experiences with doctors who don’t understand how to identify, diagnose or treat EDS. It can take years to get a diagnosis, and even then, doctors may not realize the co-morbid conditions, pain, and emotional effects of the disease. We partnered with th...

19 Things People Don’t Realize You’re Doing Because of Ehlers-Danlos Syndrome

The Mighty

Few people besides those with Ehlers-Danlos syndrome realize how the condition can affect so many aspects of life. When people see you out shopping or at work, they may not realize you’re adjusting your body to prevent a dislocation or that you don’t eat certain foods because they’re difficult to digest. We asked our Mighty readers with EDS to share the things they do that others don’t realize is because they have EDS. Living with EDS...

2 Types of Pain Ehlers-Danlos Syndrome Causes on a Daily Basis

The Mighty

Ehlers-Danlos syndrome is widely known for the chronic dislocations and subluxations as well as chronic pain. People hear that first part, but unless you’re experiencing it firsthand, no one really thinks about the snowball of symptoms that comes with simple instability. When your tendons and ligaments aren’t doing their jobs, something has to in place of them. I mean, you’re still standing, right? Yes! I call that the “compensation pain....

20 products people with Ehlers Danlos Syndrome swear by

The Mighty

When you struggle with pain, fatigue and subluxations/dislocations of the Ehlers-Danlos syndromes (EDS) on a daily basis, it can quickly become frustrating and exhausting. EDS is a group of connective tissue disorders, and since connective tissue is so prevalent in the body, EDS can affect a number of bodily systems, causing widespread discomfort and health issues. While there are a variety of treatments that can help with the symptoms, every per...

20 signs you may have Ehlers Danlos Syndrome- as told by patients, themselves

The Mighty

Ehlers-Danlos syndrome (EDS) is, unfortunately, a condition you may not know much about unless you (or a close friend) have it. The general public and many doctors may not know that certain (often invisible) symptoms are caused by EDS, not “growing pains” or “clumsiness”  meaning if you are experiencing symptoms, you might live with them for years without realizing you have EDS. There are 13 subtypes of EDS that each have their own set o...

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21st Century Ehlers-Danlos Syndrome (EDS) Sourcebook: Clinical Data for Patients, Families, and Physicians – Connective Tissue Disorders (HDCT), Classic, Hypermobility, Vascular Types

National Institutes of Health, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), Medical Ventures Press

This comprehensive ebook provides authoritative information and practical advice from the nation’s health experts about Ehlers-Danlos Syndrome (EDS) and heritable disorders of connective tissue (HDCT). Starting with the basics, and advancing to detailed patient-oriented and physician-quality information, the 21st Century Sourcebook series gives empowered patients, families, caregivers, nurses, and physicians the information they need to unders...

A Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Bending without Breaking (2nd edition)

Covering everything from recognising symptoms and obtaining initial diagnosis to living with the condition on a daily basis, this complete guide to living with and managing Ehlers-Danlos Syndrome (Hypermobility Type – formerly known as Type III) has been revised and fully-updated in this accessible new edition. The author, who has the condition, looks at how it affects children and adolescents and explores pain management, pregnancy, physical and...

A Multidisciplinary Approach to Managing Ehlers-Danlos (Type III) – Hypermobility Syndrome: Working with the Chronic Complex Patient

The complex effects of Ehlers-Danlos Syndrome (Type 3, Hypermobility), or EDSIII, on a patient’s physical and mental wellbeing are extremely challenging for everyone involved, requiring a multidisciplinary care team and enormous dedication from the patient. This book presents an overview of what it means to be a chronic complex patient, examining the wide range of physiological and psychological implications associated with EDSIII and other co...

Abdominal Aortic Aneurysm

FP Notebook

Pathophysiology -Elastin and collagen degradation in aorta wall -Provoked by environmental stressors Causes -Associated with Atherosclerosis in only 25% of patients -Aortic Dissection -Mycotic Infection -Cystic Medial Necrosis -Ehlers-Danlos Syndrome

An Educator’s Guide and A Parent’s Guide

The Ehlers-Danlos Society

The material in this guide has been prepared to help educators better understand and provide for the needs of the Ehlers-Danlos student. Each person with Ehlers-Danlos syndrome is affected differently; therefore, the needs will be different for every student. The information has been compiled from a variety of resources including parents, administrators, teachers, guidance counselors and special education teachers.

Anterior Glenohumeral Instability


The term anterior glenohumeral instability refers to a shoulder in which soft-tissue or bony insult allows the humeral head to sublux or dislocate from the glenoid fossa. The function of such a shoulder is compromised. Patients typically experience apprehension, recurrent subluxations, and frank dislocations. This pathology limits many activities, including overhead arm motions, external rotation, and, thus, physical or athletic activities. Th...

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