Epilepsy and spinabifida — Scope | Disability forum

Epilepsy and spinabifida

Vannessa
Vannessa Member Posts: 14 Listener
in Disability rights and campaigning
Hi is there anyone on here that can talk to me if they are in same boat lol I have epilepsy and spinabifida feel very alone and down sometimes don't have friends or anyone in same boat only family need some friends and someone who understands x
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  • deb74
    deb74 Member Posts: 777 Pioneering
    Hi Vannessa. I have spina bifida meningocele, hydrochephalus and epilepsy.
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  • Vannessa
    Vannessa Member Posts: 14 Listener
    Hi there I have the same spinabifida too and epilepsy too had a few seizures while on isolation with the virus struggling alot now with the spinabifida alot if pain and finding it hard coming to terms with nit able to do stuff like I used too hope u are well and staying safe thankyou so much for messaging feel better knowing there is someone like me x
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  • Andy58
    Andy58 Member Posts: 40 Courageous
    Hi, I have Spina Bifida but not epilepsy, I do have a nicely tethered cord though.
    Like you, I find it hard to come to terms with not being able to do things I used to be able to do, it's very frustrating.
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  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,538 Disability Gamechanger
    Hi @Vannessa I have epilepsy but not SB happy to help/chat anytime
    Be extra nice to new members.
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  • Vannessa
    Vannessa Member Posts: 14 Listener
    Hi there glad I've got someone coping with same as me I have alot of day to day issues with epilepsy wot about u from head pain and severe heads that stop me from doin stuff I have generalised and photosensitive epilepsy so sometimes even on here hurts and makes me ill to just lights too hubby seen me have seizure for first time and it scared him so much he thought I'd died hope u having a great day plus I've only just been allowed out from isolation for 3 month that was hard sometimes don't feel like I'm any use to anyone not working now either family supportive tell me to stop bring silly but I have always done something and now very little x
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