does anybody else have heditary spastic paraplegia HSP — Scope | Disability forum
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does anybody else have heditary spastic paraplegia HSP

kimdyer18
kimdyer18 Member Posts: 52 Connected
edited October 2021 in Rare, invisible, and undiagnosed conditions
hi i just been diagnosed with heditary spastic paraplegia i was wondering if there is anyone else on here that has it. also it is very rare to have thanks .
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Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Hi @kimdyer18
    Im sorry no one responded to this post, how are you getting on?
    Scope
    Senior online community officer
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  • kimdyer18
    kimdyer18 Member Posts: 52 Connected
    hi sam im getting on ok havent worked since july getting mobilty pip universal credit esa i have gd days and bad today bad one
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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Im glad you have benefits sorted, a lot of us understand about good days and bad, I find I need to listen to my body and rest as much as I can on the bad days.
    Scope
    Senior online community officer
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  • kimdyer18
    kimdyer18 Member Posts: 52 Connected
    thanks hun xxx

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  • kimdyer18
    kimdyer18 Member Posts: 52 Connected
    has anyone got this condtion be lovely to talk to someone that knows what im going through 
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  • Vickymay87
    Vickymay87 Member Posts: 60 Connected
    hi hi just to let you know. I have also been diagnosed with Hereditary spastic Parapelgia. If you have got any questions, let me know and I will be happy to answer ???
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  • ttillcock
    ttillcock Member Posts: 3 Listener
    Hi @kimdyer18 I’m not sure if this post is too old to get a reply but I was wondering what your experience was with Hsp as I have just been diagnosed a few days ago and I’m not sure what things are available to me/ any information at all really. I hope you’re well and coping through lockdown 
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  • Ross_Scope
    Ross_Scope Posts: 7,496 Scope online community team
    ttillcock said:
    Hi @kimdyer18 I’m not sure if this post is too old to get a reply but I was wondering what your experience was with Hsp as I have just been diagnosed a few days ago and I’m not sure what things are available to me/ any information at all really. I hope you’re well and coping through lockdown 
    Hello, I hope you are well. You may not receive as many replies as you'd hope for on a thread this old, that's true. However, you can always feel free to create your own discussion on the subject :) 

    To do this simply navigate to the community homepage and click "New discussion" :) 

    Alternatively, I can create one for you if that would be easier.
    Online Community Coordinator

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