Category: Medical & Scientific News

Call for Evidence

Rare Disease UK is gathering information to examine the implementation of the UK Strategy for Rare Diseases in England. 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
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Ehlers–Danlos Syndrome—Hypermobility Type: A Much Neglected Multisystemic Disorder

Ehlers–Danlos syndrome (EDS)—hypermobility type (HT) is considered to be the most common subtype of EDS and the least severe one; EDS-HT is considered to be identical to the joint hypermobility syndrome and manifests with musculoskeletal complaints, joint instability, and soft tissue overuse injury. Musculoskeletal complaints manifest with joint pain of non-inflammatory origin and/or spinal pain.
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Ehlers-Danlos Syndrome or Disease?

Although first described in 1892 by Tschernogobow in Moscow, the medical history of Ehlers-Danlos syndrome (EDS) begins with Edward Ehlers’s description in 1900 in Copenhagen. Several avatars would come to stymie its identification to this day, despite its frequency, and foster confusion with other pathologies. The first of these is the description by Alexandre Danlos
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Skin Ultrastructural Clues on the Impact of Ehlers-Danlos Syndrome in Women

Ehlers-Danlos syndrome is heterogeneous in its genetic origins, molecular defects, and ultrastructure of connective tissues (CT). It frequently represents underdiagnosed heritable conditions. The altered mechanical functions of the involved tissues lead to variable combinations of increased skin distensibility and elasticity, joint laxity and CT fragility. In addition, EDS women commonly suffer from some gynecologic and
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Designing more effective opioids

Opioids are a class of powerful pain-relieving drugs that work by activating opioid receptors on nerve cells in the body and brain. These pain relievers are generally safe when taken for a short time and as prescribed by a doctor, but are frequently misused because they also produce euphoria. When misused or abused, opioid pain
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Study indicates deconditioning doesn’t cause POTS, but has a cardiac trigger

A very small, yet enlightening medical commentary about Postural Orthostatic Tachycardia syndrome (POTS) has recently popped up. POTS is often -erroneously- put down to the result of deconditioning – i.e, not doing enough exercise. It’s one of the things that people with the condition (including me) find most upsetting, the thought – sometimes spoken, more
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Detecting Higher Incidence of IBS Related Symptoms

An interesting kickstarter campaign that could help our community with our diet… We know that in the EDS community there seems to be a higher incidence of IBS related symptoms. One test that is commonly used in GI clinics is a hydrogen breath test to determine if you would benefit from the FODMAP diet. Could
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