Comments on: Genetic disease linked to feud. http://www.neatorama.com/2007/04/06/genetic-diseae-linked-to-feud/ The Neat Side of the Web Thu, 16 Feb 2012 15:28:18 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Joyce Graff http://www.neatorama.com/2007/04/06/genetic-diseae-linked-to-feud/comment-page-1/#comment-99111 Joyce Graff Sun, 15 Apr 2007 14:09:01 +0000 http://www.neatorama.com/2007/04/06/genetic-diseae-linked-to-feud/#comment-99111 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 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
http://www.vhl.org 800-767-4845

]]> By: Miss Cellania http://www.neatorama.com/2007/04/06/genetic-diseae-linked-to-feud/comment-page-1/#comment-95296 Miss Cellania Fri, 06 Apr 2007 15:14:41 +0000 http://www.neatorama.com/2007/04/06/genetic-diseae-linked-to-feud/#comment-95296 I don't think they look at VHL as the sole cause, but possibly an aggravating factor in an already-violent culture. I don’t think they look at VHL as the sole cause, but possibly an aggravating factor in an already-violent culture.

]]> By: diary of a genetic defect http://www.neatorama.com/2007/04/06/genetic-diseae-linked-to-feud/comment-page-1/#comment-95177 diary of a genetic defect Fri, 06 Apr 2007 09:50:00 +0000 http://www.neatorama.com/2007/04/06/genetic-diseae-linked-to-feud/#comment-95177 What an odd story, having had both my adrenal glands removed beacuse of the tumours you get when you have VHL and the same can be said for my father (who had one the size of a grapefruit) and my brother had one too... this seems like nonsense. None of us were ever anywhere near violent. I've never even seen anything to suggest you look out for that as a symptom. In fact the extra adrenalin is more likely to make you depressed. What an odd story, having had both my adrenal glands removed beacuse of the tumours you get when you have VHL and the same can be said for my father (who had one the size of a grapefruit) and my brother had one too… this seems like nonsense. None of us were ever anywhere near violent. I’ve never even seen anything to suggest you look out for that as a symptom. In fact the extra adrenalin is more likely to make you depressed.

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