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You Don’t Look Sick: ‘I was told I was imagining my symptoms for three years’ - The Metro

Chloe_ScopeChloe_Scope Administrator Posts: 8,969 Scope community team

Nicola Deeley, 22, Winsford, Cheshire, lives with fibrous dysplasia of the skull – a bone disorder in where scar-like tissue develops instead of normal bone. 

It causes pain, misshapen bones and can lead to fractures. 

The condition can occur in other parts of the body but when it is specifically in the skull, it can cause changes to the shape of the face or in some cases, hearing or vision loss. 

For Nicola, it also causes chronic migraines. Research and development associate scientist Nicola started to notice something was wrong when she was 13.

You can read the full article here: You Don’t Look Sick: ‘I was told I was imagining my symptoms for three years’ - The Metro
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Replies

  • Chloe_ScopeChloe_Scope Administrator Posts: 8,969 Scope community team
    What are people's thoughts of this? :)
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    Scope
  • dolfrogdolfrog Member Posts: 394 Pioneering
    Typical of the lack of understanding of complex INVISIBLE DISABILITIES, by most of the population and the lack of willingness to understand our issues.
    Also the lack of knowledge in the local medical professions as to the existence of many invisible disabilities, how they may affect an individual, how to make an assessment and diagnosis, and more importantly how to provide the required life long support.
    And this lack of informed, and adequately trained and qualified medical professionals means there is a lack of adequately trained support professionals which in turn leads to a lack of public knowledge and awareness of these complex issues.
    I have Auditory Processing Disorder, a listening disability, the brain not being effectively able to process what the ears hear, which is a life long disability, which is not understood by most of those falsely claiming to be Audiologists, and the so called support professions Speech and Language, and Psychologists (who prefer to make money marketing a symptom dyslexia)
  • pollyanna1052pollyanna1052 Member Posts: 1,978 Disability Gamechanger
    Although I am chronically disabled myself and a full time wheelchair user, I can see how difficult it must be for those with invisible disabilities to cope with the comments and looks form other members of the public, who are unaware of that person`s sufferings.

    I never have that problem as people see the wheelchair and no explanation is needed.

    Why should those with unseen medical conditions have to explain themselves? It isn't  fair.!
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