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Showing posts with label #ehlersdanlos. Show all posts
Showing posts with label #ehlersdanlos. Show all posts
20 Aug 2019

Getting stronger with EMSCULPT, the no-pain, muscle-building, fat-loss medical device*

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*In collaboration with S-Thetics, Beaconsfield. My husband is super-fit, works out most days with weights and the odd run. But although...
31 May 2017

EDS Awareness: Coming to terms with chronic pain

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As ever, My EDS Awareness month post sneaks in on the last day of May. It's been a big month, including a short, but amazing, trip to...
15 Nov 2016

Ehlers Danlos syndrome. Sometimes hard to see, always hard to live with

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My youngest and I were both diagnosed with Ehlers Danlos syndrome by leading world expert in the condition, Professor Rodney Grahame (Update...
28 Aug 2016

Study indicates deconditioning doesn't cause PoTS, but has a cardiac trigger

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A very small, yet enlightening medical commentary about Postural Orthostatic Tachycardia syndrome (PoTS) has recently popped up. PoTS is...
7 May 2016

The enigma of Ehlers Danlos syndrome and why it's vital to make the #InvisibleVisible

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Ah, it's Ehlers Danlos Awareness Month again, hurrah, zebras unite and shake your stripes! Gently, though, we don't want any awarene...
21 Mar 2016

Disabling effects of PoTS shown in largest ever survey and how educating health professionals can help

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Postural orthostatic Tachycardia syndrome or PoTS, is a complete bastard of a condition. It doesn't kill, thankfully, but it can quite ...
22 Dec 2015

Can you help #careforLaura crowdfund fund life-saving surgery for Laura's Ehlers Danlos syndrome?

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As you may know, since 2013 have been disabled by the rare disease (or rarely diagnosed disease), Ehlers Danlos syndrome. I've been at r...
10 Nov 2015

Invisible Disabilities Week: Our experience with treatment for Ehlers Danlos syndrome

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This week it's the Care Quality Commission's #InvisibleDisabilities Week and today, they're highlighting Ehlers Danlos syndrome ...
27 May 2015

EDS Awareness: My experience with Ehlers Danlos syndrome and Pregnancy

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It’s EDS Awareness Month in May and I’ve decided to write about something that may be on the minds of many young women with Ehlers Danlos- ...