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May 24
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Answer Summary

Members explored whether ET is progressing more than PV, with one knowledgeable member clarifying that ET is actually more common, making up... Read more

Members explored whether ET is progressing more than PV, with one knowledgeable member clarifying that ET is actually more common, making up roughly 40% of classic MPN diagnoses compared to 30% for PV, though these numbers are complicated by misdiagnosis. A recurring theme was the role of family history, with several members sharing that MPNs can cluster in families due to inherited predispositions, and one member noting that both they and their daughter carry JAK2-positive MPNs. Members also discussed ongoing research into causes, including environmental exposures, genetic factors, and aging, with a call to support funding and participate in research to help solve this puzzle.

A myMPNteam Member

Tho the JAK2, CALR, and MPL mutations are acquired, not inherited, so multiple family members with acquired mutations that lead to an MPN may well have all been exposed to the same whatever that causes these. I have read recently about how woman have before they are even born all of their eggs, and so exposure of any woman to something might also impact the eggs she is carrying, even before birth. I am the only one in my family with the JAK2 mutation, none of my siblings nor my children having it, tho my first husband died years ago of an idiopathic pulmonary fibrosis, so I have always wondered…It is a puzzle that I hope to live long enough to see solved, where we get these acquired mutations.

May 27 (edited)
A myMPNteam Member

That’s very interesting Steve. I have wondered if ET and PV occur in roughly equal numbers and now I kind of know.

My PV followed a pretty straightforward pattern, and I say that with a grain of salt. My mother’s side seems to have thick, iron rich blood and there have been clots. I was tested for Leiden Factor and it came back negative. I do wonder on that family history though

May 25
A myMPNteam Member

Or it could be that detection rates are also up. There is stroke in my family on my father's side.

I'm the first to be diagnosed with ET, undiagnosed ET is a major cause of stroke.

Did my forbearers simply stroke? Or did they have undiagnosed ET? I'll never know, but it does make ypu think.

May 24
myMPNteam

That's a really thoughtful observation! Reading about diagnosis numbers can definitely spark questions. The good news is that seeing more people diagnosed with PV than ET doesn't mean ET is progressing into PV.

These are actually two separate MPN conditions that develop independently. ET progressing into PV isn't a Show Full Answer

That's a really thoughtful observation! Reading about diagnosis numbers can definitely spark questions. The good news is that seeing more people diagnosed with PV than ET doesn't mean ET is progressing into PV.

These are actually two separate MPN conditions that develop independently. ET progressing into PV isn't a recognized pattern. ET can, however, progress into other conditions over time, including:

- Myelofibrosis (MF) — scarring of the bone marrow
- Acute leukemia — though this is rare

The risk factors that can increase the chance of ET progressing include:

- Advanced age
- Very high platelet counts
- High white blood cell levels
- Anemia
- Certain genetic changes like EZH2 or TP53 mutations It's always worth discussing any concerns about progression with a hematologist or MPN specialist. They can monitor blood counts and bone marrow health over time to catch any changes early. Regular check-ins and baseline tests, like a bone marrow biopsy, can be really valuable for tracking where things stand.

May 24
A myMPNteam Member

Prefibrotic MF. i only read about it for the last years to make that distinction

May 28

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