Your concerns about your relative are valid, but certainly not as serious as you suspect.Your Mother is righter than are you. But, it's a guess as they estimate only about 5 in a million have polycythemia vera.
P-Vera is a blood disorder. Oncologists are also hematologists: blood docs, that's why she's been sent to one. I've been seeing a SEFlorida doc for about the 15 years I've had P-Vera. I take my meds, stay away from red meet and leafy greens, make sure there's little as possible iron in what I eat. I live every day to the fullest, as I did before diagnosis. My doc brings me in about every 10 weeks. Sometimes a 'blood suck' is called for. The blood is drained and thrown away. More often than not, it's just diet and medicine. P-Vera is from a mutated gene. Just kinduva shows up one day.
With an orphan drug as we have, the internet can do more harm than good. I went to a symposium in NYC 2 years ago. Very interesting. Two of the brightest minds in the field argued about the treatments they use. The doc who found the mutated gene was there too.
The itching is the worst part of me. I've adjusted to not getting wet during shower and exercise; umbrellas and rainwear; towels in the car.
Rest assured you Mom should be fine with a good doc. As for the gene having been found: there are drug tests in the US and people tests in France going on right now. The experts believe the drug that can stop the disease from going forward will be available in <3-5 years.
Oh, make sure Mom had a really good eye exam. The eyes can be affected by polycythemia vera.
Good luck.
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