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hi im di1

im a sufferer of disassociation fugue lack of knowledge of this disorder has cost me so much in life
Replies
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!
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 ?
http://www.mybenefitsandwork.co.uk/pip/indexxx.php
http://www.mybenefitsandwork.co.uk/med2/indexxx.php
Please excuse my ignorance but I would like to try and understand more
CR
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
Jean Merrilees BSc MRCOT
You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist