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Von-Hipple Lindau

Von-Hipple Lindau 

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  #1  
02-14-2023, 04:41 PM
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Von-Hipple Lindau

Von Hippel–Lindau disease (VHL), also known as Von Hippel–Lindau syndrome, is a rare genetic disorder with multisystem involvement.

It is characterized by visceral cysts and benign tumors with potential for subsequent malignant transformation.

It is a type of phacomatosis that results from a mutation in the Von Hippel–Lindau tumor suppressor gene on chromosome 3.

*On a personal note - This is the disease that ultimately took my mom. I was tested to see if I was a carrier. I'm not.

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  #2  
02-14-2023, 05:52 PM
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Re: Von-Hipple Lindau

Sorry for the loss of your mother. I'm glad you don't have this.
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  #3  
02-14-2023, 06:11 PM
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Re: Von-Hipple Lindau

Sorry for the loss of your mother. I'm glad you don't have this.
Thank you. The only reason I got tested was to spare my kids from getting tested. If I didn't have the gene then they didn't have it. The gene won't skip a generation.
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02-15-2023, 12:32 AM
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Re: Von-Hipple Lindau

Thank you. The only reason I got tested was to spare my kids from getting tested. If I didn't have the gene then they didn't have it. The gene won't skip a generation.
I bet it was nerve-wracking waiting for the results.
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  #5  
02-15-2023, 02:04 AM
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Re: Von-Hipple Lindau

I bet it was nerve-wracking waiting for the results.
It was more so for my mom .. she was worried that she gave it to me... it was horrible for her since she was suffering already
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02-15-2023, 09:11 PM
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Re: Von-Hipple Lindau

Thanks for sharing.

I learned something today.
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  #7  
02-17-2023, 10:55 PM
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Re: Von-Hipple Lindau

Thanks for sharing Eternally Solo. Sorry for your loss as well. Glad you aren't a carrier, for both you and your children.
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  #8  
02-17-2023, 11:04 PM
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Re: Von-Hipple Lindau

Thanks for sharing Eternally Solo. Sorry for your loss as well. Glad you aren't a carrier, for both you and your children.
Thank you! Not many people know about this disease.
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