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Old 04-09-2007, 07:19 PM   #1
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Join Date: Apr 2007
Location: Melbourne, Australia
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storyofagirl HB User
Polycythemia Ruba Vera in 20's

Hi All
I am wondering if there are any others in their 20's diagnosed with Polycythemia Ruba Vera I was VERY recently diagnosed and having seen my grandmother suffer and die from it in her 70's it is scaring me. I suffer from anemia and yet still had alot of unrelated problems, my doctor decided to give up on a whole lot of blood test and go for a blood count which turned out to show that I had Polycythemia Ruba Vera. I understand the statistics that 95% of sufferers are over 40 and are mostly men so I struggle to comprehind how I have it, I have a jewish decent which they say seems to be a large number of jewish decendents have this condition.
I am a 24 year old single mother of 2 under the age of 6, I have only just started a business which i am scared what effects this will have on it. I have only told my mother and 4 close friends, I have not told my ex husband for fear he will try to take my children away from me.

How have others around my age coped? how did you deal with the way people changed around you? Is anyone else scared most importantly?

Thanks
Story of a Girl

 
Old 04-26-2007, 04:47 PM   #2
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Join Date: Apr 2007
Location: Land O Lakes Florida
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suzie51 HB User
Re: Polycythemia Ruba Vera in 20's

I was diagnosed a couple of months ago also, although I am 51, I have seen posts from people even younger than you. Have you had any symptoms? Don't worry about it being some sort of death sentence. It is considered a manageable disease, and as long as you have a good hematologist, you are probably in good shape! Best of luck!

 
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Old 10-25-2007, 05:53 AM   #3
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Join Date: Sep 2007
Location: derby,united kingdom
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john116 HB User
Re: Polycythemia Ruba Vera in 20's

Hi young lady from Oz
I am 59 & have had PRV for approx 2 years & also am slightly aneamic, my heamotologist says they think your bone marrow uses your iron store to produce the high levels of red blood cells, he also says it is a rare condition in young people & usually not even necessary for any treatment until you get older & your viens & arterys start narrowing.They will just monitor & manage your condition, should not affect you once under control.You also have an advantage now you have this condition, in that you will always be monitored from now on so any changes will be spotted earlier than normal.I live as normal do all the things I always have , including bike riding (bicycle not motorbike) which I do at a high level having always raced.
So at your age you should be fine, keep yourself fit & healthy & enjoy your life , dont worry , that will do you more harm than the prv.
best wishes

 
Old 01-19-2008, 01:35 PM   #4
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Join Date: Jan 2008
Location: Sydney NSW Australia
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vicki59 HB User
Re: Polycythemia Ruba Vera in 20's

Hi my son was diagnosed when he was 18mths old. He is now 16 and has venesections every 3 weeks for the past 2 years. I also worry about him. He is also anemic which I dont understand because he has to many blood cell so how can this be? When the Drs take him off the iron tablets the blood test arent giving a true reading, the Drs than do a iron test and find he is iron defiecient then he is back on the iron tablets and then his blood results go through the roof. All he wants is to join the army but that isnt possible. He plays footy and is very active the only thing I am really on his back about is that he has to keep his fluids up especially in summer and when he is playing his sport.
Keep your chin up and drink plenty (water)
Best wishes

 
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