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Genetics (Expert Forum)
Polycythemia Vera
Answered by
Lisa Kessler, MS, CGC - Hereditary Disorders, hemochromatosis, Patient Outreach
DNA Direct
Welcome to the Genetics Forum! Questions in the Genetics Forum are being answered by genetic experts from AccessDNA. This forum is for questions and support regarding a person’s predisposition to a variety of medical conditions such as Ashkenazi Jewish Diseases, Bleeding Disorders, Blood Clotting Disorders, Cancer Genetics and Hereditary Cancer Syndromes, Chromosome Abnormalities, Congenital Birth Defects, Cystic Fibrosis, Family History, Fragile X Syndrome, Infertility, Newborn Screening, Rare Genetic Disorders, Prenatal Screening and Testing.
This forum is for questions and support regarding a person’s predisposition to a variety of medical conditions such as Alzheimer’s Disease, Blood-clotting Disorders, Breast Cancer, Cystic Fibrosis, Diabetes, Marfan Syndrome, Ehlers-Danlos Syndrome, etc.
Polycythemia Vera
by AnneyN, Sep 26, 2007 12:22PM
I have recently been diagnosed with Polycythemia Vera. I know that my prognosis isn't good. Do you know of any research studies going on ANYWHERE? I know that 11 - 15 years is a long time, but when that is likely the only amount of time you'll have left with your loved ones it really isn't so long. I'll be lucky to make it to 45 or 50. There has to be something out there that can help me. I mean that's just a general prognosis, what if I stroke out sooner than that? Or get leukemia sooner? Please help me. Thank you!
Doctor's Answer
by Lisa Kessler, MS, CGC, Sep 28, 2007 10:31PM
, Sep 28, 2007 10:31PM
Coping with a recent diagnosis of a chronic illness can be extremely difficult, and it may help to talk with others who have been in similar situtations. There are virtual support groups that may help you to learn from other’s experiences.
As you know, polycythemia vera is an acquired disorder of the bone marrow that causes too many cells in the blood to be produced. This condition usually develops gradually. There is a risk for AML (a type of leukemia) and stroke.
There are several research studies available for people with polycythemia vera, look in clinicaltrials.gov for more information.
As you know, polycythemia vera is an acquired disorder of the bone marrow that causes too many cells in the blood to be produced. This condition usually develops gradually. There is a risk for AML (a type of leukemia) and stroke.
There are several research studies available for people with polycythemia vera, look in clinicaltrials.gov for more information.
Member Comments (1)
by lov2laf, Mar 29, 2008 08:23PM
A related discussion, Polycythemia vera was started.
by villager113, May 15, 2008 04:59AM
A related discussion, foods to avoid with Polycethemia vera was started.
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