Rare chromosome disorder — Scope | Disability forum
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Rare chromosome disorder

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Lilly23
Lilly23 Community member Posts: 2 Listener
in Rare, invisible, and undiagnosed conditions
anyone have a child with a rare chromosome disorder?
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    Hi @Lilly23 and welcome to the community! Is there a specific disorder that you are looking for? This will help us to narrow down the search for other members who have, or their child, a rare chromosome Disorder. Have you heard of UNIQUE? They are a UK based charity for rare chromosome disorders :)
    Disability Gamechanger - 2019
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  • Lilly23
    Lilly23 Community member Posts: 2 Listener
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    It’s a microdeletion of a chromosome 2p16.3 basically the arm missing off the chromosome and I know all about unique but not found them to be of much use to be honest 
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    Sorry to hear that. I've managed to find another member, who's child has a different type of the rare chromosome Disorder. Is it support groups you would like to be directed too or do you have any further questions? :)
    Disability Gamechanger - 2019
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
    edited October 2019
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    Hi @Lilly23 I tried Contact (used to be known as Contact A Family) which I hoped may be able to help: https://www.contact.org.uk/ but sadly that also lead to Unique.

    Might I suggest, that as Scope is a much bigger community, you might perhaps say what problems you're facing; the age of your child, & what difficulties they might have. You might not 'meet' a parent with a child like yours, but you might meet someone experiencing similar problems for a different reason.....it might be hypotonia (floppiness), delayed speech, learning difficulties, behavioural problems, etc.

    This is a very supportive community & I hope you'll just jump in to see if any others might help.



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  • Adrian_Scope
    Adrian_Scope Posts: 11,011 Scope online community team
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    Hello @Lilly23 and welcome to the community. Our members come from a diverse range of backgrounds, but we'll be more than happy to support you in whatever way we can. What sort of support is it you're looking for?
    Community Manager
    Scope
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  • hjcespana
    hjcespana Community member Posts: 7 Connected
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    Hi - my son has Klinefelters Syndrome which is not the rarest of chromosomal disorders but feels rare enough to us !

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