Information about Pheos on the net

• Radio show on diagnosing pheos, The Powerful Patient (Podcast or listen on net)
• Diagnosing Pheochromocytoma, three presentations at the Boston meeting of the VHL Family Alliance, June 2007 (DVD available, or view on net)
• Learning about Pheochromocytomas - Report of the First International Symposium on Pheochromocytoma, Bethesda, Maryland, October 20-23, 2005
• Finding Elusive Pheochromocytomas, by Graeme Eisenhofer
• Plasma Free Metanephrine and the Laboratory Evaluation for Pheochromocytoma, by David F. Keren, M.D. ** Note that this article stresses the importance of testing people with high blood pressure. Please be aware that in cases of inherited pheos, blood pressure may not be elevated. It may even be low. Any two or more symptoms should indicate the need for this test. Pheo surges may be interpreted as panic attacks, palpitations, or in some cases anger or rage. *** Note too that the use of psychotropic drugs or other drugs, including marijuana and cocaine, may cause a false positive. Be sure to disclose all drug usage to the physician.
• Diagnostic Efficacy of Unconjugated Plasma Metanephrines for the Detection of Pheochromocytoma
• Pheo Test Confirmed by a separate research team in Austria
• Establishing Plasma Metanephrines Testing in your Clinical Laboratory
• Utility of Plasma Free Metanephrines for Detecting Childhood Pheochromocytomas, by M. Weise et al

Testing for Pheo

Looking for a Doctor:

• If you are looking for a doctor who understands pheos, you might want to check out the membership list on the PRESSOR website. There are members all over the world.
• Or contact one of the VHL Clinical Care Centers, all of which treat pheos in connection with VHL. Or contact the VHL Family Alliance to request a referral, 1-800-767-4845, info@vhl.org

Family Stories

• Radio show on diagnosing pheos, The Powerful Patient (Podcast or listen on net)
• Pheos and Children, by Alison E., Texas
• A Fast Horse, by Renee S., Ontario
• Information is Power to Protect, by Emily S., Minnesota (about her pregnancy)
• Artist and Entrepreneur, Pierre Jacomet, Chile
• and Pierre's deductions about alcohol and drug abuse in his family
• and the Hatfield-McCoy feud may have been fueled by pheos

Meetings

- some important meetings are scheduled for 2007-08

VHL Support Site

- covers all aspects of VHL, including pheochromocytoma. Anyone with a pheo is welcome here.

Pheochromocytoma Support Site

- This volunteer group provides support and information for people with pheos, of any origin.

Pheos may occur sporadically, or they may be associated with genetic predisposition conditions like VHL or Multiple Endocrine Neoplasia (MEN), Neurofibromatosis (NF) SDHB, SDHC, or SDHD.

The pheos found in VHL are almost never malignant (less than 3%).  Pheos of other origins have different risks of malignancy.

If you have any questions about information found on the Pheochromocytoma Support site, please feel free to contact one of the pheo volunteers, or the VHL Family Alliance.