Abstract Background: Generalised Joint Hypermobility (GJH) is a hereditary condition with an ability to exceed the joints beyond the normal range. The prevalence of GJH in the adult population and its impact on upper body musculoskeletal health and quality of life has mostly been studied in selected populations. The aims of this study were therefore,
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Beyond Diagnosis: A Case Study on Healing Time is a recent paper just added to our “EDS Medical Articles” section (https://ehlers-danlos.com/eds-articles-research/). This study reflects about how, along one year, a Pediatric Care Team managed the case of a 16 years old girl (motor-limited since she was 15 months) who had been diagnosed a rare disease (Ehlers-Danlos
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The full text of, “Pain Management in Patients With Hypermobility Disorders: Frequently Missed Causes of Chronic Pain” by Dr. Linda Stapleford Bluestein will be available for free from Topics in Pain Management until August 19th. Dr. Bluestein, an Assistant Professor at Medical College of Wisconsin–Central Wisconsin, has developed this CME/CNE activity to help educate medical providers
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Masterclass: Advancing Practice in Hypermobility The masterclass includes presentations and workshops led by a team of national and internationally recognised specialists and researchers, including members of the International Consortium. Medical, health and exercise professionals who wish to gain further knowledge and advance their clinical practice in assessing and management of children and adults with hypermobility
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Published by BioMed Research International, 2/12/2017 Joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type (JHS/EDS-HT), is a hereditary connective tissue disorder mainly characterized by generalized joint hypermobility, skin texture abnormalities, and visceral and vascular dysfunctions, also comprising symptoms of autonomic dysfunction. This study aims to further evaluate cardiovascular autonomic involvement in JHS/EDS-HT by a battery of functional
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It’s as if a switch has been flicked. Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy. Also known as ME or myalgic encephalomyelitis, CFS affects some 250,000 people in the UK. The main symptom is persistent physical and mental exhaustion that doesn’t
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Alan Hakim and his colleagues at University College Hospital in London were some of the first scientists to bring these cases to light. Hakim was helping to run a clinic for people with Ehlers-Danlos Syndrome (EDS), a group of very rare genetic diseases characterised by defects in connective tissue, leading to joint hypermobility, skin that
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Company obtains exclusive rights to NDA-enabling clinical data of the company’s lead product, VASEBRA™ (celiprolol), for the treatment of vascular Ehlers-Danlos Syndrome (vEDS) CAMBRIDGE, Mass.–(BUSINESS WIRE)–Acer Therapeutics Inc., a pharmaceutical company developing therapies for serious rare diseases with significant unmet medical need, today announced the signing of an agreement with the Greater Paris University Hospitals
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This work is being carried out on behalf of the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions. The aim of the UK Strategy for Rare Diseases is to ‘ensure no one gets left behind just because they have a rare disease’. The UK Strategy for Rare Diseases presents a landmark for
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20 years from now it is expected that many new cures and treatments will be delivered either as a consequence of research using genome editing or, directly, via genome editing derived treatments. Patients affected by rare and genetic conditions are likely to benefit from these techniques. It is important that these patients, and the wider
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