vhl screening

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• 
  jojovhl | published 5 months ago | Originally written in French vhl screening

  hello
  I am 26 years old. my mother has VHL disease since my birth. since she had surgery ​​three times. I have two older sisters. 30 and 33 years. so far none of us has symptoms. we had a screening when younger. I was 12/13 . I didn't have any test later. why? is it to me to ask for? from whom? my mother is still followed for control every 2 years. what steps can - I undertake to make new tests knowing that VHL symptoms occur more in adult subjects rather than childs? thank you all.

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  3 replies to the topic — see all replies

  • 
    joyceg98 published 5 months ago | Originally written in English

    Welcome to the group! Yes, it is up to you to ask for testing. We have a Handbook in French and other languages which will tell you what tests are needed to monitor VHL. However if you and your sisters have had no symptoms, have you had DNA testing for VHL? Do you know whether you carry the altered gene or not? It is possible that none of you in affected. It would be good to know that for sure. If you do not carry the altered gene, then you will not have VHL symptoms and you cannot pass VHL to a child. That would be very good news indeed!!

    If you have had DNA testing and know that you are at risk for VHL, then you should certainly be monitored to make sure that if something comes up, you will find it early and can make sure you are treated appropriately.

    Please talk with a geneticist or genetic counselor about DNA testing for VHL. It would be best to test your mother first so that you know exactly where the alteration occurs in her gene. With that result in hand, you can do a much simpler (and less expensive) test which will tell you for sure whether or not you carry the altered VHL gene.

    All best wishes,
    Joyce
  • 
    joyceg98 published 5 months ago | Originally written in English

    You will find the Handbook in French at vhlfrance.org/manuel
    or in English and other languages at vhl.org/handbook

    Best wishes,
    Joyce
  • 
    NICOLAS published 4 months ago | Originally written in French

    bonjour jojo, tu peu toujour si tu le souhaite refaire un dépistage, je porte la vhl du coté de mon pére,
    mon frére c'est dépisté en 2011 il n'a rien donc pas besoin d'en refaire, parles en a une généticienne qui connait la maladie. je te donne ma généticienne vhl elle te conseilleras trés bien c'est docteur isabelle coupier a hopital guy de chauliac a montpellier