Ehler’s Danlos Syndrome – places for information

Okay, we often get asked ‘What is EDS’ (Ehler’s Danlos Syndrome)?

How do you know what to look for so you know whether or not to ask your GP for a referral, and/or, assessment.

This post is designed to offer, you, its readers, links to where you can find information about EDS in the hope that you can find the answers that you are looking for.

 

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  • Please remember that I am not a medical professional just a fellow Spoonie / Zebra / Warrior sharing some information with you.
  • I must also request that you do not use the information that you read to self-diagnose, it is very important to print the information and go and speak to your GP / Primary care-giver about what you think and feel.
  • Always check first before nose-diving into self treatments just in case they are not right for you.  It can take a long time to find the correct balance of medications which work for you, we are all different so treatments will not necessarily be the same.
  • During this difficult time it is important to remember that you are not alone and there are many EDSers / Zebras  out there, (Zebra explanation links within the post),  look out for online support groups, see if there is one which meets near where you live, or community forums they may help you enormously during those difficult transitions of treatment planning and diagnosing.
  • A good Doctor – Patient relationship could prove to be beneficial!

 

 

doctor-patient-communicating-poster
It becomes easier over time if you can talk to your GP & medical care team honestly and openly about your illness(es)

 

In the UK our good ole NHS has plenty to offer regarding information about Ehler’s Danlos Syndrome (EDS)  from what it is and the differing types, to it’s symptoms, treatments, how to live with it, and also, offers links to find out more information too from other sources.  There is also access to a community forum for EDS.

 

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‘Helping put you in charge of your healthcare.’

Opening line –  See more at:  NHS Choices – About Us
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It may also be useful to check out the links for other information regarding HMS / JHS as well as EDS for other information.  If you aren’t diagnosed yet, there are many types of hypermobilty/collagen type disorders that you and your GP could also consider.

 

14188569_1095711213816599_7276681538927250629_o
EDS is a genetic collagen / connective tissue disorder… maybe your mum, dad or siblings also have it.


 

We also have the charity the Hypermobility Association (HMSA), which offers support and advice aswell as provides resource information regarding EDS for sufferers, carers friends and family members.  Also, a good place for up to date research into Hypermobility Syndrome (HMS) and other collagen / Connective Tissue disorder related illnesses.

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‘The HMSA is the only charity offering both practical support and Information Standards Accredited health and care information to people who have a hypermobility syndrome. or who are involved in the care of someone with any of the hypermobility syndromes, including Joint Hypermobility Syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Sticklers and Osteogenesis Imperfecta.’

Opening paragraph – See more at:   HMSA – About us

 

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HMSA – Home Page

HMSA – What is EDS?

HMSA – Diagnosing EDS

HMSA – Help & advice

HMSA – Blogs n Vlogs  The links are listed on the far left of the screen

The HMSA is a wonderful charity fighting for great causes and lobbying for appropriate research into hypermobility, and, they also have many more links to useful information regarding other types of HMS as mentioned above in the the quote from the HMSA About Us section of their website. They may also be worth considering taking a peek at.  These links are easy to find and access throughtout the sites pages and may offer you other kinds information and help, such as blogger sites where fellow zebras share their lives through writing blogs.

Membership and/or Group membership may be required for access to certain things.

 


 

Another avenue for information, support and advice is the charity ‘Ehler’s Danlos Support UK’ (EDS-UK).  There are various sections within the, ‘What is EDS?’, segment of the website offering a lot of information, and the Patient Support section has a good listing of advice links including where you can , possibly, get some support and advice from others with EDS.

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‘EDS UK was set up in 1987 to support, advise and inform those living with Ehlers-Danlos syndrome. We aim to help them live a full, active and positive life.   Over 25 years later, we remain the only UK based charity that exclusively represents and supports people with all types of EDS’. 
Opening paragraph – See more at:  About EDS – Your charity

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EDS UK – Home Page

EDS UK – What is EDS?

EDS UK – Patient Support

EDS UK – Community Forums

EDS UK – Why the Zebra!?

 

A fabulous charity fighting for EDS causes and campaign hard for research into EDS and hypermobility, it also like the other sites has many links for further reading, as well as a great community of fellow zebras with differing message boards about different subjects.

Membership and/or Group membership may be required for access to certain things.

 


living-life-as-a-zebra-feeling-defective
FibroFlutters via Fluffmeister Campaign Arts Campaigning and advocating to raise awareness for HMSA & EDS UK. Not a member yet!

 


 

Here at FibroFlutters we have many US followers and members and there are also places for you to find information such as ‘The Ehler’s Danlos Society’ (TEDS), which offers similar things to HMSA and EDS UK but is an American organisation so there may be slight differences with treatments etc, compared to here in the UK and always something to bear in mind before heading to the doctor..

 

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Who we are

‘Established in 1985 as the Ehlers-Danlos National Foundation by Nancy Hanna Rogowski (1957–1995) we are a nonprofit organization serving the global community to effect change and progress in the world of Ehlers-Danlos syndromes.’

Read here about how EDNF became The Ehlers-Danlos Society

Opening paragraph See more at:   The Ehler’s Danlos Society About Us / Overview

 

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The Ehler’s Danlos Society Home Page

The Ehler’s Danlos Society – EDS info

Including:

  • What is EDS?
  • EDS Diagnostics
  • EDS Types

The Ehler’s Danlos Society – Patient Support

The Ehler’s Danlos Society – Why the Zebra!?

 

Another great website to check out and again with lots of links for you to click and read regarding EDS and other HMS / collagen disorders for comparisons etc,.  An organisation willing to bring together the patient and Medical professional pathways in order to improve how we are cared for and treated to our best advantages.

(In my own opinion and understanding, after reading their about us section, through a multidiscplinary approach.)

Membership and/or Group membership may be required for access to certain things.

 

canstockphoto5874203
Here at FibroFlutters we believe that a Multidisciplinary approach to EDS treatment and management through specialised clinics is the way forward.

 

Well that’s it for now!  Brain Fog has kicked in due to being distracted 😮

Please note that this post is subject to change / updates, if you think of any information websites / charities which could / should be added please let me know

 

Carole Sian Xx 🙂

Co-Founder – FibroFlutters


 

Header picture from: UK based Animal charity – onekind

‘OneKind exists to end cruelty to Scotland’s wildlife, pets and other animals through campaigns, research and education.

Based in Edinburgh, our work is focused on Scotland’s wildlife, pets and lab animals. We also work across the UK and internationally in partnership with other animal welfare organisations.’

See more at:  About Us: – onekind


 

Other useful links/Further Reading:

From October 7 2015:  A previously published blogpost here regarding where to go for information about EDS / JHS /HMS.

Info site – Ehlers Danlos UK: Hypermobility Ehlers-Danlos syndrome

Blogpost published here on July 13th 2015 about the effects of anaesthesia and EDS JHS HMS

Article from HMSA – Anaesthetic and JHS / EDS – Posted By Alan Hakim, June 29, 2013

HMSA – Article by Donna Wicks – JHS & EDS  –  Posted By Donna Wicks, March 15, 2013

HMSA Article JHS v EDS -same thing?  –  Posted by Alan Hakim 30th August 2013

 

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