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International FND Awareness Day

Adrian_Scope
Adrian_Scope Posts: 8,572

Scope community team

Tomorrow's International FND Awareness Day, a day designed to raise awareness of Functional Neurological Disorder. 
The symptoms of FND appear quite similar to those of neurological diseases such as  Multiple Sclerosis, Parkinson’s and Epilepsy, but with no national NICE guidelines on how to diagnose and treat FND, there's a lot of inconsistency when it comes to the experiences people receive.
Do you have any lived experience of FND? If you're willing to share, we'd love to hear your story!
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Comments

  • hdeakin
    hdeakin Member Posts: 126 Pioneering
    Hi @Adrian_Scope, I have functional movement disorder. I have it as a secondary problem. I am willing to share more about it and my experience. Do you want me to post it on a reply here? Hannah x
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    If you’d be willing to @hdeakin, that would be great.  :)
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  • susan48
    susan48 Member Posts: 2,222 Disability Gamechanger
    My FND comes out in tics/twitching. Doctors call them involuntary body movements. IT also effects my speech. I find it extremely isolating, debilitating and tiring.
    i was diagnosed after a suicide attempt, an overdose which then after I developed there tics and speech issues. I had a brain scan which ruled out any damage so the neurologist diagnosed FND. 
    My psychologist has told me there’s little known about it but there is a great website, just type in functional neurological disorder and there’s lots of information 


  • April2018mom
    April2018mom Posts: 2,868 Connected
    What is FMD? Is that like Spina Bifida or not? 
  • hdeakin
    hdeakin Member Posts: 126 Pioneering
    Hi my name is Hannah and I am 28 years old. I had an ankle injury when I was 14 years old and developed Complex Regional Pain syndrome. I spent most of my teenage years in hospital and developed many secondary illnesses including osteoporosis, dystonia, spasms and was diagnosed with hypermobility syndrome/EDS. 
    I suffered a spiral fracture of my femur/hip and last summer had to had major corrective surgery to put my femur/hip in the right position.
    A few years ago my spasms were diagnosed as functional movement disorder now known better as functional neurological disorder.
    I suffer with spasms in my top half (core) and my legs. They are exhausting, painful and can be dehabilitating. They can be so violent that it has been thought that I am having a fit. 

    FND is poorly understood. Due to the lack of understanding and people thinking it is a psychological illness I generally just say I have spasms. Which is true and how it effects me. However I thought that I need to speak out, challenge misconceptions and lack of knowledge. So here I am! 

    There is a good website called FND Hope which is quite helpful. 

    At present I am in the wolfsen unit at Queen Mary’s Hospital, Roehampton. The wolfsen unit is a Neurorehabilitation unit and has a FND programme. I have not been in long but I think they have people for up to 12 weeks. I think there are 4 FND beds. At present there are 4 FND patients. Prof Edwards at St George's Hospital, Tooting is also good. 

    I write a blog-Hannah's Hope about my experiences, disability and lifestyle. At some point I will have to do a blog post about FND. If you are interested here is the link: hannahdeakin.blogspot.com 

    Hannah x
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Thanks for sharing @hdeakin :) Keep us updated on your rehabilitation, all the best! :)
    Disability Gamechanger - 2019
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Thank you for sharing your stories @susan48 and @hdeakin.

    As Ami, says please let us know how the programme goes @hdeakin.
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