A Reluctant Contortionist
A blog about being too bendy. To raise awareness of Ehlers Danlos Syndrome.
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  • What is EDS?
  • What is POTS?
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    • Being diagnosed with POTS.
    • Being diagnosed with EDS.
    • Being fed through tubes.
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Coronavirus Lockdown

June 1, 2020 By A Reluctant Contortionist in Ehlers Danlos Syndrome 2 Comments Tags: EDS, Ehlers Danlos Syndrome, Parenteral Nutrition, Postural Orthostatic Tachycardia Syndrome, POTS, Reluctant Contortionist

Coronavirus Lockdown

Are you enjoying the coronavirus lockdown? Surprisingly, I know quite a few people who are. For some it’s given them unexpected time off work, time with their family, and they’ve been doing activities they haven’t had time for for years. But for others it’s been a truly awful period. Many people are miserable and scared, […]

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Dem Bone Scans – Update 2

May 3, 2020 By A Reluctant Contortionist in Ehlers Danlos Syndrome No Comments Tags: EDS, Ehlers Danlos Syndrome, Parenteral Nutrition, Postural Orthostatic Tachycardia Syndrome, POTS, Reluctant Contortionist

Dem Bone Scans – Update 2

In 2015 I was diagnosed with osteoporosis, which is a common side effect of living with Ehlers-Danlos Syndrome. EDS causes joint pain, which makes it difficult to exercise, and inactivity over many years can lead to weak bones. I was diagnosed after a bone scan, which is a brief non-invasive process that measures a person’s […]

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5 Years of ‘A Reluctant Contortionist’

November 30, 2019 By A Reluctant Contortionist in Ehlers Danlos Syndrome 2 Comments Tags: EDS, Ehlers Danlos Syndrome, Parenteral Nutrition, Postural Orthostatic Tachycardia Syndrome, POTS, Reluctant Contortionist

5 Years of ‘A Reluctant Contortionist’

Five years ago I started writing this blog. My first post ‘Hello World’ talked optimistically about raising awareness of EDS, and sharing my story to help others with the condition. I committed to writing the blog for a year and then to decide if I was achieving anything. If not, I joked I would turn […]

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The 12-24 Film has been Shortlisted for the Final!

February 25, 2019 By A Reluctant Contortionist in Ehlers Danlos Syndrome 4 Comments Tags: 12to24, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Reluctant Contortionist

The 12-24 Film has been Shortlisted for the Final!

The 12-24 film has been shortlisted for the final of The Charity Film Awards! This means we did very well in the public vote. Thank you so much to everyone who voted, we’re very grateful. The Charity Film Awards have been great publicity for our campaign and have helped raise awareness of EDS.

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The 12-24 campaign has raised £201,000!

January 27, 2019 By A Reluctant Contortionist in Ehlers Danlos Syndrome No Comments Tags: 12to24, Ehlers Danlos Syndrome, Parenteral Nutrition, Postural Orthostatic Tachycardia Syndrome, Reluctant Contortionist

The 12-24 campaign has raised £201,000!

In 2016 I wrote a blog post titled ‘Could Nutritional Supplements Improve the Symptoms of EDS?‘ It’s the most viewed post on this site and has generated the most comments and emails by far. There is no treatment for EDS, so I was very intrigued by the idea that supplements could reduce symptoms. I sent […]

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Recent Posts

  • TPN and Blood Tests (update)
  • EDS & Complementary / Alternative Therapies
  • Dem Bone Scans – Update 3
  • Hickman Line #3
  • A blog post written by AI software
  • TPN and Blood Tests
  • COVID-19 Update
  • My Summer Holiday …in Hospital
  • Rebound Hypoglycaemia
  • Ten Years Without Food
  • Coronavirus Lockdown
  • Dem Bone Scans – Update 2
  • 5 Years of ‘A Reluctant Contortionist’
  • The 12-24 Film has been Shortlisted for the Final!
  • The 12-24 campaign has raised £201,000!
  • 12-24 in The Charity Film Awards!
  • ‘The Big Bum-ble’ Sponsored Walk – Update
  • The 12-24 Film
  • Allergy Testing
  • A New Hickman Line
  • A Blog Makeover
  • Are All Administration Sets Sterile?
  • Applying for a Personal Independence Payment (PIP)
  • Home Artificial Nutrition Week – UPDATE
  • My New Wheels…

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