The McCoy article suggests a link between the family feud and von Hippel-Lindau disease (VHL).
The real problem is pheochromocytoma, not VHL. Pheos are a tumor of the adrenal gland as described in the article. They occur in only 20% of people with VHL, and more often in some families than others. The hormone surges they produce are most often perceived as panic attacks or palpitations, not rage.
Pheos occur in the general population, and in people with any of six other genetic flaws. If anyone feels they are having uncontrolled high blood pressure, palpitations, unexplained bursts of panic or rage, and/or excessive sweating, they should ask their doctor to do a test called "plasma free metanephrines". This is the most accurate test for a pheo. Other tests only find 60-80% of pheos. They are not easy to diagnose.
Still today half of all pheos are diagnosed on autopsy. They are very dangerous. The good news is that once they are diagnosed they are almost always treated successfully.
We wish you the best of health. Joyce Graff, Executive Director VHL Family Alliance www.vhl.org 800-767-4845
The real problem is pheochromocytoma, not VHL. Pheos are a tumor of the adrenal gland as described in the article. They occur in only 20% of people with VHL, and more often in some families than others. The hormone surges they produce are most often perceived as panic attacks or palpitations, not rage.
Pheos occur in the general population, and in people with any of six other genetic flaws. If anyone feels they are having uncontrolled high blood pressure, palpitations, unexplained bursts of panic or rage, and/or excessive sweating, they should ask their doctor to do a test called "plasma free metanephrines". This is the most accurate test for a pheo. Other tests only find 60-80% of pheos. They are not easy to diagnose.
Still today half of all pheos are diagnosed on autopsy. They are very dangerous. The good news is that once they are diagnosed they are almost always treated successfully.
We wish you the best of health.
Joyce Graff, Executive Director
VHL Family Alliance
www.vhl.org 800-767-4845