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My son has Guillain-Barre syndrome. Has anyone ever been through this?

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Lisaoc1976
Lisaoc1976 Community member Posts: 6 Listener
edited November 2022 in Physical and neurological impairments
Hi I’m new on here my son 19th years old has been struck with GBS was wondering anyone on here been through this. 
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  • chiarieds
    chiarieds Community member Posts: 16,130 Disability Gamechanger
    edited November 2022
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    Hi @Lisaoc1976 - & welcome to the community. Just so our other members know, I presume you mean Guillain-Barre syndrome?
    As far as I remember, we've only had one other member asking about this in recent years: https://forum.scope.org.uk/discussion/comment/269404#Comment_269404  but unfortunately they're no longer active.
    There's some info on the NHS website about GBS, which you may however already know about: https://www.nhs.uk/conditions/guillain-barre-syndrome/
    How are you & your son coping?



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  • Lisaoc1976
    Lisaoc1976 Community member Posts: 6 Listener
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    Yes I do mean that sorry and yeah it’s very rare we are only in week 4 and feels like years thank you for your comment 
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  • chiarieds
    chiarieds Community member Posts: 16,130 Disability Gamechanger
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    It's awful when your child suffers; something you'd rather go through yourself, I know. Sorry I forgot to give the NHS link above, now rectified.
    Please let us all know how your son gets on. Wishing the best for you both.
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  • Lisaoc1976
    Lisaoc1976 Community member Posts: 6 Listener
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    Aww thank you. Xx
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
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    @Lisaoc1976 Hello and a warm welcome from me, how are you and your son today?

    I can imagine it's been really hard for you. Are you getting much support from specialists with the treatment and management of his GBS?

    I found the GAIN charity who provide support to families affected by GBS, if you want to take a little look at their website too :smile:

    I really hope things get easier for you both in the upcoming weeks. But, if ever you want to chat, rant or vent, please know we're always here and we understand. Although we might not have direct knowledge of GBS, our members have lived experience of many different conditions so can relate with where you're at.

    Just for your info: I've amended the title of your thread and moved it to our Physical and neurological impairments category so others can spot it and reply. 

    Take care and please keep us updated with how your son gets on. All the best  <3
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  • Lisaoc1976
    Lisaoc1976 Community member Posts: 6 Listener
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    @Cher_Scope thank you so much 
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  • Lisaoc1976
    Lisaoc1976 Community member Posts: 6 Listener
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    Cher_Scope said:
    @Lisaoc1976 Hello and a warm welcome from me, how are you and your son today?

    I can imagine it's been really hard for you. Are you getting much support from specialists with the treatment and management of his GBS?

    I found the GAIN charity who provide support to families affected by GBS, if you want to take a little look at their website too :smile:

    I really hope things get easier for you both in the upcoming weeks. But, if ever you want to chat, rant or vent, please know we're always here and we understand. Although we might not have direct knowledge of GBS, our members have lived experience of many different conditions so can relate with where you're at.

    Just for your info: I've amended the title of your thread and moved it to our Physical and neurological impairments category so others can spot it and reply. 

    Take care and please keep us updated with how your son gets on. All the best  <3

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Hi @Lisaoc1976. Thank you for reaching out to us. I appreciate how much courage it can take to reach out.

    It sounds really difficult that your son has been struck with GBS. I can see your post has already received responses.

    If we can do anything else to help please don't hesitate to let us know. We are all here for you and listening to you.

    You don't have to face this, or anything else, alone if you don't want to  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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