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Advice - Sterger Weber Syndrome
MyRubyRed
Posts: 941 Forumite
I know this is probably the wrong forum to post this on. But does anyone know any child suffering from this condition. Or can you advise where to repost
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Comments
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Not heard of it, sorry.
But if you get no replies, you could maybe try the disability and dosh part of the forum.All shall be well, and all shall be well, and all manner of things shall be well.
Pedant alert - it's could have, not could of.0 -
I know this is probably the wrong forum to post this on. But does anyone know any child suffering from this condition. Or can you advise where to repost
Google Sturge-Weber syndrome, I believe there is a community, though maybe American as seems quite rare. Hope you find what you want.0 -
special kids in the uk is an excellent website.0
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my neice has the condition. First seiures started at the age of 11, nothing again until last week, she's 21 now. Currently in ICU.0
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So sorry to read your niece is in ICU-I'm afraid I know nothing about the condition-hope she gets well soon. xxmy neice has the condition. First seiures started at the age of 11, nothing again until last week, she's 21 now. Currently in ICU.GE 36 *MFD may 2043
MFIT-T5 #60 £136,850.30
Mortgage overpayments 2019 - £285.96
2020 Jan-£40-feb-£18.28.march-£25
Christmas savings card 2020 £20/£100
Emergency savings £100/£500
12/3/17 175lb - 06/11/2019 152lb0 -
nigelag. I hope all goes well. A close relative has this. He is not yet 1yr old and already having a lot of siezuresxx0
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My RubyRed. Sorry to hear of your relative, so young makes it all the more painful for those arround. From the experience we have had is that they do stablised but it is a slow process. Then hopefully medication will keep them stable.0
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Hoped that there was going to be an op available but the problem covers both sides of the brain so its a non starter. Take care xx0
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thanks and the best of luck for yours, hope they come out quick and well.0
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www.cafamily.org.uk help families who have a child with a rare condition. They can sometimes put families in touch with each other.
Nigelag - hope your niece makes a speedy recovery.0
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