Stories of Von Hippel-Lindau Disease

Von Hippel-Lindau Disease stories
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Von Hippel-Lindau Disease stories
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...
Von Hippel-Lindau Disease stories
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 
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. ...
Von Hippel-Lindau Disease stories
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...

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Von Hippel-Lindau Disease forum

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How many people in the world have this 

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Statistics of Von Hippel-Lindau Disease

2 people with Von Hippel-Lindau Disease have taken the SF36 survey. Mean of Von Hippel-Lindau Disease is 2685 points (75 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

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