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Hi, my name is mel. Looking to connect with other people of children with klinefelter syndrome

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melperrins
melperrins Community member Posts: 2 Listener
edited February 2022 in Start here and say hello!
Hi, I'm a mum of a 5 year old with klinefelter syndrome and looking to connect with other parents or people with XXY. 

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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,561 Championing
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    Hello and welcome @melperrins thanks for joining the community and sharing why you've signed up today :) I hope you find the community welcoming and supportive.

    You're more than welcome to explore all the topics for discussion on our categories page, but you might like to visit Children, parents and families as well. 

    If you've got any questions or need a hand please do let us know.

    Alex
    Online Community Coordinator
    Scope

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  • Tori_Scope
    Tori_Scope Scope Posts: 12,499 Championing
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    A warm welcome to the community from me too @melperrins :) It's great to have you on board! 

    I've done a quick search, and it looks as though we've had parents of children with Klinefelter syndrome on the community here before, but not particularly recently. I hope that some other parents or people living with the condition will find your post soon! 

    I was also wondering whether you might be interested in accessing one of our family services, such as Parents Connect? Please do take a look, and let us know if you have any questions. 

    Would you like to share a little more about your experiences of having a child with Klinefelter syndrome? I'd be interested in hearing more about it :) 

    National Campaigns Officer at Scope, she/her

  • melperrins
    melperrins Community member Posts: 2 Listener
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    Thanks @Tori_Scope and @Alex_Scope I will check those out. 

    KS (XXY) is a gentic condition which affects 1 in 600 males but is rare in that hardly anyone seems to know anything about it. 

    My little boys suffers with sensory processing issues, verbal processing and working memory issues. He has a lot of traits simialr to dsypraxia, dyslexia and there is overlap with autism and adhd. He is very shy and sensitive but has a huge heart and loves nothing more than being snuggled up with his mummy. 🥰
  • FunWithChemo
    FunWithChemo Community member Posts: 28 Connected
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    I do not have Klinefelter syndrome but I am XXX. Here is a bit the Mayo Clinic has to say about XXX"

    Triple X syndrome, also called trisomy X or 47,XXX, is a genetic disorder that affects about 1 in 1,000 females. Females normally have two X chromosomes in all cells — one X chromosome from each parent. In triple X syndrome, a female has three X chromosomes.

    Many girls and women with triple X syndrome don't experience symptoms or have only mild symptoms. In others, symptoms may be more apparent — possibly including developmental delays and learning disabilities. Seizures and kidney problems occur in a small number of girls and women with triple X syndrome.

    I fall into the very mild form and did not know I had it until a random test by my Doctor in my early 30s. I just find it interesting. The only other remarkable issue around my health is that I am a 4-time cancer survivor having had 4 cancers and treatment over a 23 year period of time.

    I wish you luck and hope you will find folks here with similar issues with who you can bond and share information. Kind Regards, Debra Harrison FunWithChemo

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