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What are the best treatments for Von Hippel-Lindau Disease?

See the best treatments for Von Hippel-Lindau Disease here

Von Hippel-Lindau Disease treatments
4 answers
There have not been any positive treatments I personally have taken that have been effective.
Posted May 16, 2017 by Terry 600
Mostly evasive treatments (surgery) but if you can have radio frequency ablations then this would be the best way.
Posted May 16, 2017 by Kerry-Anne 1000
Surgery
Nephhrectomy
Posted May 16, 2017 by Paul 1100
Regular labs/24 hour urine collection, MRI, ultrasound, CAT scan
Surgery

NOT stereotactic radiosurgery or cryoablation
Posted May 17, 2017 by Bobbi 1000

Von Hippel-Lindau Disease treatments

Von Hippel-Lindau Disease life expectancy

What is the life expectancy of someone with Von Hippel-Lindau Disease?

6 answers
Celebrities with Von Hippel-Lindau Disease

Celebrities with Von Hippel-Lindau Disease

2 answers
Is Von Hippel-Lindau Disease hereditary?

Is Von Hippel-Lindau Disease hereditary?

3 answers
Is Von Hippel-Lindau Disease contagious?

Is Von Hippel-Lindau Disease contagious?

3 answers
ICD9 and ICD10 codes of Von Hippel-Lindau Disease

ICD10 code of Von Hippel-Lindau Disease and ICD9 code

2 answers
Natural treatment of Von Hippel-Lindau Disease

Is there any natural treatment for Von Hippel-Lindau Disease?

1 answer
Living with Von Hippel-Lindau Disease

Living with Von Hippel-Lindau Disease. How to live with Von Hippel-Lindau D...

5 answers
Von Hippel-Lindau Disease diet

Von Hippel-Lindau Disease diet. Is there a diet which improves the quality ...

4 answers

World map of Von Hippel-Lindau Disease

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Stories of Von Hippel-Lindau Disease

VON HIPPEL-LINDAU DISEASE STORIES
Von Hippel-Lindau Disease stories
FAMILY VHL STORIES
Dear friends dont hide yourselves. We are a family vhlfa alliance.   Join us +6944969603 +2102711306
Von Hippel-Lindau Disease stories
VHL SUCKS!
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 STORY
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...
Von Hippel-Lindau Disease stories
DIAGNOSED AND HOPEFULLY ALWAYS WAITING
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
VHL
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 

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Von Hippel-Lindau Disease forum

VON HIPPEL-LINDAU DISEASE FORUM
Von Hippel-Lindau Disease forum
HOW MANY PEOPLE IN THE WORLD HAVE THIS
How many people in the world have this 

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