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#1
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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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#3
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02-14-2023, 06:11 PM
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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.
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#7
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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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