Von Hippel-Lindau Disease
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Von Hippel-Lindau Disease stories
I first found out I had VHL in 2007. I have always been healthy never broke a bone or been in the hospital never felt sick. I developed a tumor in my right kidney in late 2005. Doctors sugested removing the whole kidney and the cancer would be gone. ...
Views: 525 May 17, 2017, 8:20 AM by Toni
Dear friends dont hide yourselves.
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Views: 523 Jul 13, 2016, 8:44 AM by athina
My vhl experience begins around 12 yrs old. I woke up one day and was having blurry vision in my left eye. My mother took me to the eye doctor who sent me to a specialist. This Dr was fresh out of med school and I was one of his first patiants. He lo...
Views: 465 May 16, 2017, 9:25 PM by Paul
At first my family thought we had pheochromocytoma, but when my cousin died NIH found out we had VHL. I was genetically tested in the fourth or fifth grade and do have the gene. My brother passed away from the disease, my mother has had numerous surg...
Views: 356 May 16, 2017, 4:39 PM by Nikki
My husband was diagnosed in 2004 with vhl has had double adreanalectomy kidney spine brain op and loss his sight due to vhl... 3 children also carry this gene and have had several operations and there also grandchildren as well
Views: 333 May 17, 2017, 12:08 AM by Kerry
Von Hippel-Lindau Disease forum
How many people in the world have this
Views: 518 Jan 28, 2016, 1:58 PM by Ian
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