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  healthy12 | published 24 days ago | Originally written in German ist irgend jemand da draussen?

  Hi out there, am I right here? Because I am new in the Club and am searching for the right field to get into contact with someone. To find contact with VHL patients. At the time being I am the only affected I know. Would be nice, if somebody would get in touch with me. Regards, I.K.

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  • 
    AndreasBeisel published 18 days ago | Originally written in German

    Hi, habe nur deinen Post in diesem Forum erhalten. Kanst mir auch ne Mail schreiben...
  • 
    healthy12 published 10 days ago | Originally written in German

    Hi Andreas,

    the last days I had to take some time-out. I physically didn´t feel very well. I often have these kind of periods. Do you know if it is normal with the VHL disease to have such physical problems? I ask, because I do not know anybody else with VHL. Until now I went through three brain tumor surgeries and still have five tumors in my head.Therefore I am often asking myself, if my effects are caused by them or by VHL. This disease is pretty versatile, as one can also read here. You asked me about the self-help-association-yes I know it and I am also a member. This is also why I came to this site. Before that I didn´t even know that there is such an organization for this disease. Fortunately a lot happened in the mean time. After my second surgery(1990) the doctors told me that I was healed, only after my second surgery (2003) I was explained, that I hit the jackpot. Meanwhile finally more and more physicians know at once what this disease is all about.
    Ok, wishing you a nice weekend,

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  • 
    joyceg98 published 3 days ago | Originally written in English

    What kinds of symptoms are you feeling? As you say, there are so many aspects to VHL that it is hard to say what is "normal" and what needs attention.

    Have a happy weekend!

    Best wishes,
    Joyce
• 
  healthy12 | published 10 days ago | Originally written in German Titles of Topics

  Hello Maria,
  greetings from Germany. I would like to give you the email address of a very good specialist. He works at the Teaching Hospital in Freiburg and is very approachable. His name is Prof. Dr. Hartmu P.H. Neumann and his email address is: hartmut.neumann@uniklinik-freiburg.de
  I hope you find the help you need.
  All the best

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• 
  mariapapadia | published 12 days ago | Originally written in Italian la mia famiglia e vhl

  Hello, my name is Maria. I am 43 and I discovered I suffer from this illness 13 years ago. I inherited it from my father and 5 out of us children have it. The illness developed in kidney trouble for 2 of us, who had to undergo dialysis and then both died at the age of 50. One of them had retina angiomas and, at the age of 20, totally lost his sight. Another one died at the age of 13, 35 years ago. However, we are not sure the cause was this particular illness because it was not known in those days. I have been operated on the cerebellum area and on one eye. I have now lost my sight in my left eye and I wear a prosthesis which, luckly, you cannot really notice! Today, in 2012, following a number of annual checks I have found out I have 6 angiomas in my head: cerebellum, brain and optic chiasm, where there is a larger one. Now I am going to see other doctors to clarify the situation and work out what I should do, as surgery is not possible for the optic chiasm. Please tell me if you have experience with angioma in that particular area. I need advice on what I should do! Thank you!

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  • 
    Karina published 12 days ago | Originally written in Spanish

    Hello María: I don't speak Italian, but I think you will understand me. There is a neuro-surgeon specializing inn VHL. He has created a fully-fledged attention unit at the Hospital Fundación Jiménez Díaz (Madrid), and he has shown very good results at very complicated cases. Write to him and tell him about your case (he may request you for MRI or TAC). His name is José María de Campos Gutiérrez, and his e-mail is jmcampos@fjd.es. I wish you the best of luck.

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  • 
    joyceg98 published 11 days ago | Originally written in English

    Hello and welcome! Are you in touch with the VHL team in Padua? If not, I would suggest you connect with them as they have more experience with VHL than any other group in Italy.

    Dr. Giuseppe Opocher
    Dept Med/Surgical Sciences
    Univ Padua, via Ospedale 105
    Padova
    IT-35128 Italy
    W: +39 049 821-3029
    Fax: +39-049-657391

    There is also a local support group for VHL in Italy. For all European countries, you will find reference to the local groups at vhl-europa.org

    Best wishes,
    Joyce
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  robpleticha | published 13 days ago | Originally written in English VHL Family Alliance Spring News is out

  vhl.org/newspdf/vhln1205.pdf
• 
  robpleticha | published 2 months ago | Originally written in English new vhl handbook

  From the VHL Family Alliance
  Updated sections include....
  Pancreatic issues Pheochromocytoma diagnosis Endolymphatic sac tumors Benefits and limitations of stereotactic radiation Watchfulness during pregnancy Pre-implantation genetic diagnosis

  vhl.org/handbook/
• 
  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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  • 
    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
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  NICOLAS | published 4 months ago | Originally written in French combattre la maladie

  bonjour a tous, je suis nico, un nouveau membre, en bref on m'a détécté la maladie en decembre 2010 ( trés malade depuis 2007) je me suis fait opéré de trois tumeurs ( bulbe, glande surenales et rein) , cela à été trés dur car j'enchainé l'hopital, les opérations et les examens, je pesé 75 kg avant son déclenchement et je suis tombé à 60kg( vomissement, beaucoup de fatigue, parfois violent, dépression... mais grace a nos spécialiste de la vhl j'ai pu m'en sortir je retrouve le gout a la vie , j'ai repris du poid 73 kg je n'ai plus aucun symptomes, si vous avez des questions n'hésité pas