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Peutz–Jeghers syndrome STK11

Posted , 2 users are following.

Guest
Guest

Hi All

Christie has recently had a test for STK11....has anyone else had this done ??

1 like, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    HI Deb,

    Yes, I've had STK11 testing and a mutation was found. I'm a PJS person living in the USA.

    If Christie is in the UK, is she seen at St. Mark's in London? They are the PJS specialists there. And STK11 testing is done nearby.

    Did you write earlier that PJS people are meeting on Facebook?

    I'm interested in learning more about that.

    Also, there's a free online group of PJS people from around the world at acor dot org, click on mailing lists, click on P, click on Peutz-Jeghers.

    warmly,

    Stephanie

  • Guest
    Guest

    Posted

    Hi there, christiie's test was positive & her farther & I have now been tested, awaiting results.

    The facebook group is peutz jegher's support, come & join us xxx we are seen at Birmingham Ciyy hospital & Heratlands hospital xx

  • marie04797
    marie04797 Guest

    Posted

    hello,

    my son is 24 and has an appointment on 24th nov with a dermatologist as at a doctors appt it was suggested he may have peutz-jeghers . He has the black spots on his lips and has unfortunately developed some on his penis, which is why it took nearly a year for him to confide in me. He doesnt want me to go to his derm appt with him and i'm worried that if he is diagnosed with his syndrome he wont take all the information in. also he has never had any bowel issues.

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