Undiagnosed and rare conditions
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hi im di1

di1di1 Member Posts: 4 Listener
im a sufferer of disassociation fugue lack of knowledge of this disorder has cost me so much in life


  • di1di1 Member Posts: 4 Listener
    doc said as its rare there is no funding to investigate the disorder further.i was diagnosed in 2010 it cost me my job and im currently waiting a medical to see if I get to keep my driving licence.id like to start fundraising to fund research into this disorder but im not sure who id pay funds too to start the research.esa said I cant claim that as im fit for work and job centre said ill never work due to the health and safety of the disorder and pip said it doesn't effect me often enough to claim pip.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @di1, welcome to the community! I've moved your post to our Undiagnosed and Rare conditions category, and you can also check out existing discussions within this group here.

    I'm sorry to hear you've been getting mixed messages about your condition and your entitlements, but I think it's wonderful that you're wanting to fundraise!

    If there isn't a charity or cause specific to your condition, you might want to consider an organisation like Rare Disease UK, who aim to support those living with a rare condition. Scope also have some fundraising advice that you might find useful!
  • di1di1 Member Posts: 4 Listener
    thanks.i just want to help others who have rare disorders like myself as I know how hard it is and I want to make it a little easier for others in the future.
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi di ( hi sorry couldn't resist :) ) and welcome

    So sorry you are in this position, I had to google out of curiosity

    With rare conditions like yours you will have to educate the benefits system ( as well as us ) as it is easier for them to dismiss it than to understand it
    How often do your episodes occur ?

    Have you tried the self tests for PIP and ESA ?



    Please excuse my ignorance but I would like to try and understand more


    Be all you can be, make  every day count. Namaste
  • Jean_OTJean_OT Member Posts: 528 Pioneering

    Hi @di1

    Sorry to hear that the professionals you are having to deal with seem to have little or no understanding of Dissociative Fugue.

    In my experience, people who have a condition that others might have a limited awareness of, can sometimes find it helpful to have some written information about their condition that they can hand to professionals. This can be especially useful in an emergency, such as needing to access A&E.  I found this article about Dissociative Fugue, perhaps you could use it as the basis of a handout: https://www.webmd.com/mental-health/dissociative-fugue#1

    You mentioned wanting to be involved with research, perhaps the International Society for the Study of Trauma and Dissociation http://www.isst-d.org would be a potential starting point for seeing what studies are available as I believe that Dissociative fugue comes under their umbrella


    Best Wishes


    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

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