I have PXE, and am looking for a way forward in life in terms of money and health — Scope | Disability forum
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I have PXE, and am looking for a way forward in life in terms of money and health

dodsie12
dodsie12 Community member Posts: 1 Listener
Hi my name is Adam and I'm 38 and from the uk . I suffer with pxe and have lost my job in construction due to my disease . I suffer with macular degeneration , stomach issues and intermittent claudication in my legs . I'm a little lost on a way forward in life . I need help with a way forward money and health wise . I just don't know what to do 
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Comments

  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi and welcome to the community 

    For finances I suggest you do a benefits calculator so you can enter all your own details as there are quite a few things taken into consideration 

    You can find one on gov website or on here in benefits section 

    Have you applied for pip at all maybe have a look to see if you would be eligible 

    As for your health your first point of call is your gp 
  • chiarieds
    chiarieds Community member Posts: 15,858 Disability Gamechanger
    Hi @dodsie12 - welcome to the community & thank you for joining. I know a little about PXE as it can overlap in some with my genetic disorder (Ehlers-Danlos Syndrome). I don't know if you are aware that as well as getting support here, there's also a charity for sufferers of this. Please see: http://www.pxe.org.uk/
    There's also the Macular Society: https://www.macularsociety.org/                with info about PXE: https://www.macularsociety.org/macular-disease/macular-conditions/pxe/
    As far as financial help goes, you could try a benefits calculator to see what may be available to you. Try: https://benefits-calculator-2.turn2us.org.uk/
    Personal Independence Payment (PIP) would be appropriate if you find your problems affect some activities of daily living &/mobility. You can see the activities looked at here: https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdf
    Scope has an overview of the benefits you may be able to claim here: https://www.scope.org.uk/advice-and-support/benefits/types-of-benefit/
    Sorry it's a lot of information, but do come back with any questions as we have members who can advise about benefits.
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,487 Disability Gamechanger
    Welcome to the community from me as well @dodsie12 :) Thanks for sharing your experiences with us. I'm sure losing your job must have been hard, but it's good to hear you're keen to find a way forward.

    I can see you've already received some helpful replies above. Please do give that information a read over, and let us know if you have any further questions.

    Just to let you know, I've moved your post into our category for discussions relating to undiagnosed and rare conditions. This is because, when I searched online for PXE, I found a few resources explaining that PXE is quite rare- is that right? 
    National Campaigns Officer, she/her

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  • tomjmk
    tomjmk Community member Posts: 3 Listener
    Hi Adam made me sad reading this. Have you made any progress? I have similar PXE symptoms to you and also depression and anxiety and just managed to get PIP after going to tribunal. Happy to discuss. 
  • poppy123456
    poppy123456 Community member Posts: 52,166 Disability Gamechanger
    tomjmk said:
    Hi Adam made me sad reading this. Have you made any progress? I have similar PXE symptoms to you and also depression and anxiety and just managed to get PIP after going to tribunal. Happy to discuss. 

    This thread is from July 2021 and the member hasn't been active since that time so you may not get a reply.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.

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