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Hi, my name is Martin. Is there any help for people claiming PIP who have PXE?

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martinsephton1
martinsephton1 Community member Posts: 1 Listener
edited November 2022 in PIP, DLA, and AA
Rare and undiagnosed conditions relating to pip, just putting myself out into the forums to allow other people to know about hidden and undiagnosed conditions and whether there is help or advocacy available to help with making a claim for pip when myself and others have PXE, 

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  • Steve_in_The_City
    Steve_in_The_City Scope Member Posts: 634 Pioneering
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    Hi @martinsephton1 I too have a rare illness MCS/IEI. I do not know what PXE is, please educate me. I get PiP, even though my illness is not recognised. 
  • poppy123456
    poppy123456 Community member Posts: 57,131 Disability Gamechanger
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    You do not need a diagnosis to claim PIP and even if you did have a diagnosis, it would make no difference anyway because it's not about a diagnosis. What matters is how those conditions affect you and whether it's possible to score enough points needed for an award.

    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.
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,734 Disability Gamechanger
    edited November 2022
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    @martinsephton1 Hello and a warm welcome to our online community, how are you today? 

    You can access independent welfare advice local to where you live by visiting the Advice Local website. This is a good idea so someone professionally trained can go through the PIP activities and see whether your PXE impacts your functional ability to carry them out. Remember you need to score 8 points minimum in either the daily living or mobility activities to be awarded PIP standard rate. Please let us know how you get on and good luck.

    For your information, I've tweaked the title of your thread and moved it to our PIP, DLA and AA category to help others easier see it and reply :) 

    @Steve_in_The_City Here's a link to more about PseudoXanthoma-Elasticum (PXE)
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  • Steve_in_The_City
    Steve_in_The_City Scope Member Posts: 634 Pioneering
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    Thank You! Being declared disabled is a legal definition, and not a diagnosis. The people at PiP have been very good and understanding about me, even though my illness has not been diagnosed. 
  • poppy123456
    poppy123456 Community member Posts: 57,131 Disability Gamechanger
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     The people at PiP have been very good and understanding about me, even though my illness has not been diagnosed. 

    You don't need a diagnosis to be entitled to PIP.
    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.
  • tomjmk
    tomjmk Community member Posts: 3 Listener
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    Hey Martin I have PXE and was able to get PIP based on the vision loss and lack of Independence including inability to drive and loss of confidence to go out. The fact I had a history of anxiety and depression probably helped. I scored 0 points during my application but was granted 20 points by tribunal. Happy to discuss. 
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