Von Hippel-Lindau (VHL) Community

Meet, discuss & support other patients or families living with Von Hippel-Lindau (VHL). Contribute to topics, or just share what's on your mind

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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Hi Ingo,

Thanks for your post. My name is Rob and I work with EURORDIS. I'm glad you have found the German association http://www.hippel-lindau.de/ . Gerhard from the German association shares information here sometimes.

Would you be interested in writing your story? If yes, you can email it to me (robert.pleticha@eurordis.org) or post it yourself through your profile. I do not think we have any stories of living with VHL in Germany. After it is posted, we translate it across the website's 5 languages.

Have a relaxing weekend!

kennst du schon die VHL-Selbsthilfegruppe unter http://www.hippel-lindau.de ? Wenn du möchtest, dann kannst du mich - auch VHL-Betroffener - per Mail (info@andreasbeisel.com) oder hier im Forum kontaktieren.

Hi Andreas,

actually I have been trying to contact you recently. But it seems that I must have done something wrong. I'm not very savy when it comes to forums unfortunately, or, I should rather say, this is my first attempt. If it does not work this time either, I guess I will need a manual.

Hi, habe nur deinen Post in diesem Forum erhalten. Kanst mir auch ne Mail schreiben...

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,

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,

Hello, after a long time I would like to reply to you. Most of the symptoms I can assign to my brain tumors and the operations. But with some, such as e.g. frequent fatigue and weakness or vision disorders, I am still in doubt whether these are side effects of Vhl, meaning typical for Vhl. There are so many different symptoms. With different aspects I mean that depending on where the tumor is located effects change, therefore it is difficult to assess whether another one is growing again. For example, I have vision disorders but no angiomas in my eyes. Instead I have a RF in my kidney - but no complaints. Therefore I ask myself, if generally there are no specific VhL-symptoms.