I'll know soon

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• 
  s_elizabeth | published 6 months ago | Originally written in English I'll know soon

  I just discovered this site while doing some VHL research. I haven't been diagnosed yet. But I'm about 80% sure I have VHL. My dad's mom, my dad, his sister, and her son all had (or have) VHL and i know there is a 50% chance of it being passed down from my dad.
  I am 21 years old, and lucky to say I haven't had any major health problems yet. I've recently had unexplained abnormal urine tests, with high protein levels and I know this is a sign. Though most doctors don't know about VHL, they just keep doing urine tests. I'll be tested by a VHL specialist as soon as I can get in for an appointment. Not looking forward to hearing the news, but it's better to know now

  I did have a question. If you know you will 50% be passing the gene down, would you still have children?
  One reply to the topic — see all replies

  • 
    joyceg98 published 6 months ago | Originally written in English

    This is a very personal decision. Different people have made different decisions, and all are "right" in that they are right for the individuals making the decision. Our position is that there are only two votes that count -- the two parents involved -- and everyone else can say what they think but they don't get a vote.

    I did a series of articles on this topic some years back, and have recently added some additional stories to talk about new technology options.
    www.vhl.org/newsletter/vhl1998/98aachld.php
    www.vhl.org/newsletter/vhl2011/11ad_babies... and the three personal stories that follow: Our Experience, Our Best Mistake, and Expecting a Boy

    There are also some cautions for women with VHL. You should talk with your doctors to be sure you understand how a pregnancy might affect your own health status.
    vhl.org/handbook and find the section on VHL and Pregnancy

    I wish you all the best!

    Joyce