Living with Polycythemia Vera

Annette describes living with polycythemia vera (PV) and how she has been helped by the MPN Research Foundation, which is a member of the National Organization for Rare Disorders (NORD).

[gc-ixfh]

Ty for posting . I have two comments. First your complexion doesnt exhibit the usual redness so good for you. Secondly, some like myself cant walk to the corner store let alone 200 mile treks. In any case a worthwhile video .

[tontsyy]

I’ve just turned 31, and this morning I was diagnosed with PV.

Thanks for the video!

[astrovantony]

I just found out yesterday I have it. So thank you for your Video.

[ariellawood]

Just diagnosed yesterday. I'm on the prowl for info. Thank you for this information.

[dhillonranaa]

Thanks for this video !! I don't understand why are we raising money for those drug company who are already making billion dollars from drug. I think this support goes to family who have tough time that point. Some time patient can't work for long time and all family depends on him ..

[Eglistio]

I'm really scared. I tried donating blood and they refused me after seeing my red blood count was high and my white blood cells were high. I'm freaked out cause never in my life did I think I would or could possibly have this disease. last year alone I declined medical insurance and will find out next week if I have This. I have a wide of two years and my family has been through so much and I don't know if they could take more bad news. I'm just genuinely scares to live with this disease that I will have no control in within time and more so my family..

[alexismarquez]

PHLEBOTOMY AND ANTICOAGULANTS ARE IMPORTANT FOR TREATMENT.

[SahirKhan-qr]

i am 33 and diagnosed with PV and i am fit athlete with no symptoms at all. no symptoms from the long lists available on internet

[nicodemusr.a]

i was 1year diagnosed this desease, this will be all the time to plebhotomy and consumption low dosage aspirin

[Suzy]

I am 60.. diagnosed a week ago. I was experiencing symptoms but just chalked it up to getting older. A dentist strongly suggested I see a GP for blood work when he saw how heavily my gums were bleeding. I called that dentist to thank him.. because I’d been feeling sick for a long time. The GP called with my results and referred me within a few days to a Hematologist.
I had my first phlebotomy and was given Hydroxyurea. I also am taking a baby aspirin every morning. I see my hematologist tomorrow.. although still in shock I feel with managed care.. I can live a long life. 🙏. Hugs everyone.

[PhyLink]

I also have PV. I was diagnosed in 2002. I truly appreciate you taking the time to make this video. Thank you. ♥

[CrisEdwards]

I have PV and I really appreciated this video. Thanks so much!

[johnmay]

Hydroxy urea side effect gave me a nasty skin ulcer. Went from a persistent itch to ulcer in a couple of months.
Not everyone reacts this way.

[aurorapinillos]

I am 77 and one year ago the blood showed I had high platelets with bio marker jak Trombocytocis and start taking 500mg daily of HYdrea and 81mg Aspirin, D3 vitamin. My platelets came down to normal range but sometimes I feel tired. I appreciate you are sharing this information.

[diannew]

Thank you. I was diagnosed with PV in September right before my 63rd birthday. I'm amazed you can trek like that. I can't even wash the dishes without having to sit down to rest every few minutes. . Good for you, being so proactive. I'm undergoing a phlebotomy once a month. My blood was so thick the first time, it took them 90 minutes to draw out 200 mls of blood. Since being told to drink more water and do the 81 mg. aspirin each day, it's much easier to draw the blood. I'm not feeling a whole lot better tho. I'm under the care of an oncologist but I wonder if she knows much about PV.

[theforgottendinosaur]

i was diagnosed with this when I was 12

[valentinlopez]

I was diagnosed two months after my 67th birthday. My PCP suggested I donate blood on a regular basis to reduce my blood count before prescribing medication.

[entrustind]

How many years you ve been diagnosed having PV ? what is your Hemoglobin and hematocrit label ? Is WBC also increased at the time of diagnosis ?

[alexismarquez]

INCREASED ERYTHROCYTES, HEMATOCRIT, INCREASED LEUCOCYTES IN THE BONE MARROW, EXCESSIVE PRODUCTION OF PLATELETS

[paulmitchell]

I have this disease too. It was a complete shock to hear that I had a blood cancer at the age of 38. In my picture my face is red becaue when the picture was taken I didn't realize that I had the disease. I lost weight and was dizzy and had ringing in my ears too.