PV in your twenties

[clevemic]

I was diagnosed with PV 3 years ago, at age 49. I have learned to accept my new normal, have responded well to Pegasys, and am doing well overall. The support I am seeking from this forum is for my 28 year old son. Abnormal blood tests have led his physician to suspect PV. He will be doing genetic testing and further blood work later this week. No BMB has been scheduled at this time. If there are any other young PV patients on this forum, please share your story and encouragement. I thought that I finally had a good grip on my own diagnosis, but when my child is facing this, it is more difficult to accept. Thank you.

[Janeydot]

Hello I am 26 - diagnosed last October I am also on two Facebook groups where there are loads of people with PV who were diagnosed in their 20s - many of whom are still going strong 20+ years later! Have a search on Facebook and you’ll see lots of groups pop up! I’ve been on aspirin and phlebotomy up til now and am due to start on Pegasus soon. The illness doesn’t really effect me day to day - I work and socialise like a normal 26 year old, and cycle 30km a day! The thing I struggle to deal with is the emotional side and accepting I have a “cancer”. It scares me that one day it will probably progress and that I don’t know when that will be, but I’m learning to accept and adjust as the days go by! How long have you been diagnosed for and how have you found it?

[clevemic in reply to Janeydot]

Thank you for your reply. I was diagnosed 3 1/2 years ago, following a routine blood test. I was told at that time that it was very unlikely that my children would develop PV. However, my 28 year old son is currently going through further testing, as his Hgb has been climbing, and is no longer in the acceptable range. He has a new job, in a new city, and is very much alone, as he faces the scary possibility that he may have this rare cancer. If his test results confirm his doctor's suspicion, I will definitely tell him to connect with this amazing group. What FB groups do you recommend?

[Janeydot in reply to clevemic]

There’s two I follow - “Polycythemia support group” and “Polycythemia supportive friends”. The reason they are so great is they have 3000+ diverse members, many of which are quick to reply to any questions! There are people as young as 17 and lots of us in our 20s. I hope he doesn’t have PV but if he does I’m happy to connect with him