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polycythemia vera

just dx. with this disease, and looking for anyone who can give me insight into this
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I have had polycythemia vera my entire life.  My mother had it, and her father had it.  My brother also has it, as well as two of my five children.  For us, it clearly is inherited.  The over production of blood was usually released through nosebleeds - as explained to us the nose vessel is the weakest in the body.  I am 58 years old and have never been told that my life expectency was limited - Wow!!  Precautionary measures, yes.  Donating blood every three months or so is a good thing.  For me, as a women, I suffered heavy menstruals that my body used to release the excess blood production.  An aspirin a day keeps the blood thin to avoid clotting - don't combine this with other thinners like Omegas.  We already have a problem with getting the blood to stop flowing once it gets started without compounding it with too thin of blood.  And you will notice that one of you collar bones will prominently protrude as you get older.  Avoid Iron supplements which will only increase blood to life threatening levels - well water? make sure it is not iron rich.  
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I am very interested in your post and am curious how things are going? From what i understand you are saying there are 4 generations of your family that has been diagnosed with PV? What im curious about is how you and your family were diagnosed. Were they diagnosed by the blood test or the bone biopsy???
The reason i ask is because 1 out of my 4 brothers definitly has it. He was diagnosed last December after a stroke (49 years old) and i was just recently diagnosed but the strange thing is that he was negative for the JAK2 gene BUT i was positive for it.  For some reason that just seems so strange to me!!!!!! Meaning if having the disease passed down, then the inherited aspect is not in gene mutation itself but something underlying it.  Id like to understand and the internet really doesn't say a hell of a lot. Its great you can just go and give blood. My treatment has not started due to two failed attempts at reaching a vein. My brother started his treatment at the beginning of the year and he says he feels so much better. When were you first diagnosed? and you said 2 of your children have it? how were they diagnosed and at what age? I wish you the best. It really is amazing how it impacted your family the way it did. Your in my thoughts.Gloria
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thank you for your response, it is a little over whelming. I am getting blood taken every week until it comes down and daily asa81 tx at present time.
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Avatar universal
Your bone marrow is producing too many red blood cells.  The biggest risk of this blood disorder is developing clots.  There is no cure; it is only managed.

Bloodletting (withdrawing blood), low-dose aspirin, interferon medication, etc. are some treatments that are used.  

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