PV Hereditary or not?

[TheFog]

My husband had Primary PV - does anyone know if its hereditary?.. Just thinking of my 15 year old son. Perhaps I need to ask the question with the consultant..

[charl17]

Clotting problems are hereditary but mpns are very rare. My mother suffered from very small strokes from age 58. My father had a deep vein thrombosis and then a cerebral hemorrhage at 48. Neither of them was diagnosed with mpn. I had a TIA at age 60, treated with aspirin, and was diagnosed with primary myelofibrosis at age 64. The driver mutations are clearly acquired not inherited. But the interaction with inherited characteristics is just not understood. Why do some people have the driver mutations but no sign of the disease? Nobody knows. I am nearly 70 and haven't had a clot since I started aspirin.

[TheFog in reply to charl17]

Hi

That’s very interesting thanks for your info.

[Mazcd Partner MPNVoice]

Hello, it is understandable that you are worried about your son, but MPNs are not hereditary, though some families can have more than person with a MPN, this information on our website might help you

mpnvoice.org.uk/about-mpns/...

[TheFog]

Thank you for your reply, that has given me peace of mind.

[hunter5582]

The vast majority of us with PV-JAK2+ have this as an acquired condition. There is a Familial JAK2 that is a very rare form of the mutation. I am JAK2+ PV and my daughter is also JAK2+. At age 32 she is still asymptomatic in that her CBC numbers all look good, though platelets are in the low 400s. Coincidentally, we are also both positive for Neurofibromatosis Type 1 (another genetic condition unrelated to MPNs). It is unlikely that there is anything to worry about regarding your son, but there is no down side to staying aware of the very small chance of the JAK2 mutation being passed on. There is likewise no downside to keeping an eye on CBCs that we all periodically do as a part of routine care. Perhaps at some point(s) - check fo the JAK2 mutation if it will ease your mind. All the best to you and your family.

[Anag]

Hi TheFog,

When medicine doesn’t know something, they always blame it in genetics. Families have tendencies in their genes. It’s important to steer clear of environmental insults on the body to make sure those genes don’t get turned on. Eat Good whole foods, sleep well, reduce stress, reduce alcohol, chemicals in the house, air, water, reduce carbs, make sure digestion is running well. These are keys to longevity and good health.

[Tinkerbell13]

Hello....my mother had PV and I have ET jak2 +....when first diagnosed, brought up the subject and haematologist said it was totally unconnected. But I discovered, afterwards, my medical notes actually had in them 'mother with PV - and since then have found that there are familial connections (as was told by another haematologist). But also told it is extremely rare. I was concerned, having children and grandchildren, but so far have only passed on my vitiligo to granddaughter. Another immune disease, so I suppose, just worth a mention. Kindest regards to you. Tinkerbell