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New to this forum - HNPP

amandawisehallamandawisehall Posts: 5Member Listener
Hi I'm new to this group and wanted to ask advice. Is hnpp a registered disability? Myself, my sister, my mum, my uncle and our children suffer with a mild form of hnpp. My sister has started to get severe pains running down her legs and was told it's due to the hnpp - does anyone else suffer with this?

Replies

  • steve51steve51 Posts: 4,696Member, Community champion Chatterbox
    Hi @amandawisehall.

    A very big welcome to you to our online community/website I  do hope that we can help ???

    Please please let me know if you want me to find out more about this for you ??
  • amandawisehallamandawisehall Posts: 5Member Listener
    Hi Steve. Thank you for your reply, I would welcome any information or help with this matter x
  • steve51steve51 Posts: 4,696Member, Community champion Chatterbox
    edited September 2017
    Hi.

    That's fine here is some info below too start with !!!!

    Please please let me know if I can help you further with this???
    Neuropathy with liability to pressure palsies.

    NHS - Hereditary Neuropathy

  • amandawisehallamandawisehall Posts: 5Member Listener
    Hi Steve. Hope you are well? Wondered if you would be able to help again? Have you heard of people with hnpp getting tight muscles i.e. neck and shoulder muscles and getting burning pain if touched or clothes touching the skin? Arm also feels really heavy.
    many thanks Mandy 
  • Sam_ScopeSam_Scope Posts: 6,791Administrator Scope community team
    Hi @amandawisehall there is a website for HNPP here with lots of information and support. 

    @firegem71 has spoken about HNPP before - can you offer any support firegem?
    Scope
    Senior online community officer
  • steve51steve51 Posts: 4,696Member, Community champion Chatterbox
    edited September 2017
    Hi @amandawisehall

    Yes I will be more than happy in helping you anytime night or day.

    I have got this info off the NHS website for you I do hope that it is ok ?

    Please please let me know if you need anymore info ??

  • CazannCazann Posts: 39Member Whisperer
    Hi I'm new to this group and wanted to ask advice. Is hnpp a registered disability? Myself, my sister, my mum, my uncle and our children suffer with a mild form of hnpp. My sister has started to get severe pains running down her legs and was told it's due to the hnpp - does anyone else suffer with this?

  • CazannCazann Posts: 39Member Whisperer
    Hi Amanda. I have just read your post and joined the forum.  I too have HNPP, as does my elder sister.  I was diagnosed in 2014 after having numb fingers and toes for years.  My sister was having falls and her doctor thought that she had MS. She was sent for tests and then a neurologist said he would send her for a DNA blood test and she got the results of it being HNPP.  I went to see my doctor after having these problems and he said it was nothing to worry about.  I asked him it could be HNPP and he said, 'What is that?' He hadn't heard of it. He asked me if I had any info on it and I said that I could show him the letter that my sister had recieved from her neurologist..I have had a few problems since my diagnosis. I get pains in my hands, feet, legs, hips and as you mentioned, stiffness in my shoulder and neck. There is a Face book group that is very interesting. I don't think that the medical profession are well up on this rare disease and the NHS website isn't very informative.  I hope that you can get more info on it and I will keep looking for more info too.
    Take care
    Cazann.
  • Jean_ScopeJean_Scope Posts: 526Member, Helpline, Community advisor Chatterbox

    Hi @amandawisehall

    Your query seems to be "does having HNPP enable you to register as disabled?".

    Being 'registered disabled' isn't something that exists now as it did in the past, see:

    https://www.scope.org.uk/support/disabled-people/becoming-disabled/overview

    Generally speaking access to disability related resources, benefits, rights and facilities etc, is based not on your diagnosis but on your functional abilities. Was there something in particular that you were hoping to be able to get/access? If you I may be able to signpost you towards the correct criteria/procedure.

    Best Wishes

    Jean

    Jean Merrilees BSc MRCOT

    Information Specialist - Enabling Environments

    Scope

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

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