Undiagnosed and rare conditions
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microdeletion 16p11.2 and klinefelter syndrome

kazozzledkazozzled Member Posts: 1 Listener
I have 2 children 1 with microdeletion 16p11.2 and one with klinefelter syndrome 
I'm hoping to get some advice on getting support for my Son, I am struggling to cope with looking after him. He is 30 and has klinefelter my daughter is 28 and has the deletion 

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @kazozzled welcome to the community! 

    What sort of support does your son need? Let us know where you'd like more information and hopefully someone can help.
    Scope
    Senior online community officer
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @kazozzled.

    A very very big welcome to our online community.

    I do hope that we can help you further with this ???

    Do please let me know if I/we can do some research on the internet for you ???

     I would happily do this if it would help ???

    Please please let me know if if I/we can help you further with this ???
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @kazozzled how are you getting on?
    Scope
    Senior online community officer
  • RedpersianRedpersian Member Posts: 1 Listener
    Hi Kazozzled
    Im not sure if I can advise on anything but just wanted to say I also have a son with Klinefelter Syndrome, but only 5 and have found the Klinefelter Syndrome Association UK on KSA.net  good. There are also FB groups for support both for the Mums and for men with KS Raj Baksi is your name for these groups and also the KSA. They have activities and get togethers for those with the condition and their families once you join the KSA. I havnt yet as we are only at the start of our journey. They also have conferences where there is information on support. I apologise if you already know about this organisation and are a member. I have found them really helpful so far.
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