EDS UK

@ehlersdanlosuk

Registered UK Charity raising awareness of Ehlers-Danlos syndrome. Striving to support and educate on the EDS

Borehamwood, London
ehlers-danlos.org
Geregistreerd in oktober 2012
1.259 foto's en video's Foto's en video's

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  1. Vastgemaakte Tweet
    17 uur geleden

    Raise awareness of the reality of EDS, promote kindness & understanding. Share your before & after photos on social media with , along with your story, and help others understand the complexity of the condition is often hidden. Text EDS3 to 70500 to donate £3

    7 antwoorden 11 retweets 16 vind-ik-leuks
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  2. heeft geretweet
    8 uur geleden

    The magazine 'Fragile Links' is now out! It includes us putting our hEDS together to help childbearing women via research. Sign up & support to read more.

    , , en 7 anderen
    6 retweets 8 vind-ik-leuks
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  3. 11 uur geleden

    Thank you for sharing your story Poppy!

    The reality of living with EDS can often be very different to how it is perceived to the…
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  4. heeft geretweet
    14 uur geleden
    Als antwoord op

    You can find the EDS toolkit here >

    1 retweet 4 vind-ik-leuks
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  5. heeft geretweet
    13 uur geleden
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    Nothing shaming about disability: all part of diversity. Let's remove barriers, acceptance difference & realise our potential!

    1 antwoord 3 retweets 9 vind-ik-leuks
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  6. heeft geretweet
    13 uur geleden

    text to donate code is: EDS3 to 70500 to donate £3. Please help out guys 👍🏻🦓

    3 retweets 1 vind-ik-leuk
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  7. heeft geretweet
    12 uur geleden
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    I have used the fact sheets in the UK EDS site to inform my kids school about it, they have been fantastic i will pass on the tool kit information as well

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  8. heeft geretweet
    12 uur geleden

    on holiday in Lanzarote, where today, just walking 10m leaves me in agony. Even though I can’t really do much, I’m still smiling, as tomorrow could be a good day 😀☀️

    2 retweets 9 vind-ik-leuks
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  9. heeft geretweet
    11 uur geleden

    So here is my story. Please check out for more information. Please feel free to comment, or message me about anything I will always try my best to help, or point you in the direction of those that can!

    We are raising awareness of the reality of living with Ehlers Danlos Syndrome Share your before and after photos with on social media with your story To help others understand the complexity of the condition that is often hidden Text EDS3 70500 to donate £3
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    3 retweets 2 vind-ik-leuks
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  10. heeft geretweet
    17 uur geleden
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    and haven't moved yet!

    1 antwoord 1 retweet 5 vind-ik-leuks
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  11. heeft geretweet
    16 uur geleden
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    I left teaching & now work for the NHS, however, I’m still struggling to receive support. I have always tried to live my life as actively as possible & self-manage my , but, now that I’m suffering from complications, the lack of understanding has become apparent.

    3 antwoorden 2 retweets 7 vind-ik-leuks
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  12. heeft geretweet
    16 uur geleden

    “You look fine” “It’s the same for everyone” “But, you haven’t done anything” I could go on, apparently the pain is making me mardy this morning

    Since we launched the toolkit we have been inundated with requests for similar resources to help people explain EDS to friends, family and to employers and colleagues. The misonceptions of EDS and lack of understanding have a huge impact on those living with the condition.
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  13. heeft geretweet
    16 uur geleden

    , text to donate code; EDS3 to 70500 to donate £3

    3 retweets 7 vind-ik-leuks
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  14. heeft geretweet
    16 uur geleden

    Thank you to everyone that has sponsored us so far. The 5K Big Bum-ble walk is tomorrow morning in Regent's Park. We are raising funds for our nutrition research in Hypermobile Ehlers-Danlos Syndrome. Please click below if you would like to sponsor us:

    , en
    4 retweets 4 vind-ik-leuks
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  15. heeft geretweet
    15 uur geleden
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    That's partly why the campaign is showing how much ADDED BENEFIT people with diverse life experiences bring.

    2 antwoorden 1 retweet 6 vind-ik-leuks
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  16. heeft geretweet
    15 uur geleden
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    Tried pacing, but (as only qualified member of my 3-person department) it was too much. I couldn't carry on. Now teach from home & help out with local & ; still miss teaching 'properly' so much though. Schools aren't generally equipped to deal with disabled staff 😢

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  17. heeft geretweet
    15 uur geleden
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    My problem is that I’m too proud, & try to carry on being “normal” - often not declaring that I have . My recent diagnosis & impending hip surgery, mean I can’t ignore disabilities anymore. This means that work see that I’ve gone from “normal” to “disabled” overnight.

    2 antwoorden 1 retweet 6 vind-ik-leuks
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  18. heeft geretweet
    17 uur geleden
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    I wholeheartedly take my hat off to this lady. I had to give up my 5 year teaching career as I couldn’t manage the pain & fatigue, with the overwhelming pressures of teaching in a secondary school. Unfortunately, I couldn’t manage , & teaching, despite trying everything

    2 antwoorden 3 retweets 7 vind-ik-leuks
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  19. 17 uur geleden

    Tweet, Facebook and Instagram your pictures with , tag and share our text to donate code; EDS3 to 70500 to donate £3. Thank you.

    1 antwoord 3 retweets 1 vind-ik-leuk
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  20. 17 uur geleden

    Since we launched the toolkit we have been inundated with requests for similar resources to help people explain EDS to friends, family and to employers and colleagues. The misonceptions of EDS and lack of understanding have a huge impact on those living with the condition.

    3 antwoorden 7 retweets 18 vind-ik-leuks
    Deze collectie tonen
    Deze collectie tonen
    Ongedaan maken
  21. 17 uur geleden

    , have 'too generic symptoms', or that it is all in their heads. This is why the EDS Toolkit is so important; clearly explaining the related conditions and symptoms of EDS, misconceptions and how it can present.

    3 vind-ik-leuks
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