Potocki-Lupski Syndrome PTLS - Living with Potocki Lupski Syndrome (PTLS)

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  • เผยแพร่เมื่อ 20 พ.ย. 2024
  • Christian, A young man with PTLS, answers questions about having this rare chromosome duplication (dup 17p11.2)
    Potocki-Lupski Syndrome (PTLS)
    Sindrom de Potocki Lupski
    This information is for education purposes only. It is not designed to diagnose, prescribe, treat, or cure. Please consult your physician or healthcare provider.
    ** If you find this information helpful, please consider becoming a recurring monthly or one-time donor. Thank you! www.ptlsfoundation.org

ความคิดเห็น • 11

  • @ahmadolabisiamal3484
    @ahmadolabisiamal3484 9 หลายเดือนก่อน

    well done to you. i am a medical student and i was studying PLS when i came across this. you are doing amazing. also i give great accolades to your mum who was patient with you and has made you into a beautiful person.

    • @PTLSfoundation
      @PTLSfoundation  9 หลายเดือนก่อน

      Thank you so much! We are happy to talk with you more. Julie@ptlsfoundation.org

  • @BlackF35
    @BlackF35 2 ปีที่แล้ว

    Chris we love you! Your italian family Roberta, Dave and Little Vicky

  • @jorgebotero5874
    @jorgebotero5874 6 ปีที่แล้ว

    Well done, thanks for this helpful comments. You are a brave guy

    • @PTLSfoundation
      @PTLSfoundation  6 ปีที่แล้ว

      Thank you very much, Jorge. Life is happy and full of potential!

  • @reflectionsinthebible3579
    @reflectionsinthebible3579 7 ปีที่แล้ว

    goos speaker :) well done :) p.s. I do not have ptsd, but as a kid I sure had some anxiety as a kid and I still do sometimes but I have mastered it. :) Do you have a hard time with weight? did you have a hard with weight as a baby and child? how do you keep your weight up?

    • @PTLSfoundation
      @PTLSfoundation  6 ปีที่แล้ว +1

      As a baby, they do not put on weight, even when they eat. They will add weight as they get older. Some of the teens and adults have trouble with too much weight, and others remain skinny.

  • @shaileshshah2202
    @shaileshshah2202 6 ปีที่แล้ว

    hi
    i m shailesh shah from india.
    my daughter has a protoki lupski syndrome
    is there any cure of these ?

    • @shaileshshah2202
      @shaileshshah2202 6 ปีที่แล้ว

      my number is 94288 41668

    • @PTLSawareness
      @PTLSawareness 6 ปีที่แล้ว

      Thank you for reaching out. This disorder does not have a "cure", however, the children, teens and adults have great potential in life.