MPD-PV hereditary? : Guys my dad has just told me... - MPN Voice

MPN Voice

10,344 members14,254 posts

MPD-PV hereditary?

Chelle_ profile image
16 Replies

Guys my dad has just told me my uncle had PV although not treated for it......I am sceptical.....what's the chances of it being hereditary?

Written by
Chelle_ profile image
Chelle_
To view profiles and participate in discussions please or .
16 Replies
Paul42 profile image
Paul42

Hi

my sister has et whilst i have pv. There has to be some family link, both jak 2 positive.

paul

millycat profile image
millycat

I have ET , my nan was known to have a blood complaint back in the day...does make you wonder!

sammypink profile image
sammypink

Very interesting! My father lost both his legs to blood clots in his late 40's and sadly died of a blood clot 14 years ago! Makes me think maybe there is something go this. I have ET and jak2, maybe he had a undiagnosed MPN?

There was a link on here to a series of videos asking pertinent questions one of which was this very one. It stated that there is no hereditary link but a family member is predisposed to it. He explained that it is similar to a family where there is a predisposition to high blood pressure

Although the experts and researchers tell us no, I must admit I too can't help wondering about this. I have a family history of blood clots and I wouldn't think everyone who dies of this or related problems is then tested for MPDs.

This conditions must have been severely under-diagnosed in the past. We are told that the condition was acquired in our lifetime and not inherited. But the experts do say they do not know for sure what causes it. Greetings to everyone.

Dodders profile image
Dodders

Hello,

the question you ask was clearly on very many minds including my own when I attended an MPD Forum in London last year. The answer from the experts was, in essence, that the chances of an MPD being passed on or developing was no greater whether a relative or parent had an MPD or not. I was able to speak directly with one of the professors (I forget which one) at the forum about this and, despite pointing out that my father had recently been diagnosed with chronic leukemia, his reply reassured me that I should not worry in that respect. I hope that helps.

Chelle_ profile image
Chelle_

I am off to the forum in Southampton and have a beam appointment next week so it shall be a question I ask. Apparently my uncle was diagnosed with PV but has never been treated. This is why I am slightly skeptical. Thank you for your replies it's good to hear other people have the same thoughts. Stay well people :)

IainF profile image
IainF

I have PV and my dad does too - also his sister apparently - and me knowing about PV through this is sort of how I got diagnosed.

I had a blood test during a medical and my GP was going through the results with me and said that I had high platelet count, I told him about the old man and he sent me for more blood tests 'just to be on the safe side', the rest as they say.......

My brother and sister have since had themselves checked out and, thankfully, nowt wrong.

Borage profile image
Borage

Hi Chelle,

My maternal grandmother died of Leucaemia. My mother and brother have Ideopathic Thrombocytopoenic Purpura, very low platelet counts. These are both bone marrow conditions.

No connection?

Best wishes,

Borage

Rosiedawn profile image
Rosiedawn

I think it is now (recently) accepted that there is a familial type of polycythaemia. My mother seems to have had it although she was not formally diagnosed. I have it and am treated with regular venesections and 75mg Aspirin. I am Jac 2 negative. My daughter also has raised Hb and is monitored regularly but has not required venesecting as yet. There is still much ongoing research being done in this area. Best wishes, Rosemary.

Tinkerbell13 profile image
Tinkerbell13

My mother had PV and was told she had the highest red blood count probably in the world!! 3 years ago I was diagnosed with ET. Told by haematologist that because of my age (just 70 then) and my mother's PV that I was more at risk. She also said it is rare for mother and daughter and more usual for the male side. I have thought for a long time that it would be interesting to do a big survey to find out more in this regard. My daughter is concerned too that she could inherit it. Tinkerbell

JediReject profile image
JediReject

Hi Chelle, ,et Al. . I find this subject very thought provoking and after reading your responses a tad revealing as at diagnosis I asked my consultant about the hereditary nature of such conditions only to be tiold there was no connection and it was simply down to luck. . . Not good luck tho LOL. The reason I asked was like Borage my maternal Grandma died of Leukemia before I was a Twinkle in me dads eye and my mum passed 13 yrs ago of Myeloma with marrow scarring,, and in 06 out of nowhere I suddenly develop MF. . . Hmm. . is it really that we are just unlucky or worryingly will our children or grand-children be the next generation of 'customers' sitting in Haematology waiting patiently for their blood results. . I think ones family history is entirely relevant as it is in other forms of cancer especially if you have a dodgy or faulty gene. . Cheers

harleydavidson profile image
harleydavidson

Hi Chelle

My dad had MF, I have PV. They tell me its not hereditary!!!

Mel x

Chelle_ profile image
Chelle_

Hmmm, it is very interesting, not good interestiing either. I am only 33 and am now reconsidering having children because there may be the slightest of chances that they may have it.....why would I want to put anyone through what I am going through. But then they may not have it. I think that there needs to be more studies done in to familiy and related illnesses.

I hope your all well.

NewBloom profile image
NewBloom

My mother had various blood clots, both her and her mother died of brain bleeds. My Nan and brother also had mini strokes. My other brother has blood pressure problems. Scary!

Geoff_mpnfamily profile image
Geoff_mpnfamily

I've had Polycythaemia for six years now and my mum was diagnosed with it just before Christmas 2013. Our haematologist is now saying we have familial pv with query? Written at the end of whatever is being written.

You may also like...

Can ET & PV Hereditary

changes in genes as we got older not hereditary, but my poor Mum has been ill on and off for a...

PV Hereditary or not?

My husband had Primary PV - does anyone know if its hereditary?.. Just thinking of my 15 year old...

MPD

same side effects please anyone here can tell me what the issue is this and the Jak2 is enough or...

Concerns on useing hair dye with a mPD

Just wondering if anyone knows if its okay to still put colour on my roots , i have been doing this...

PV

8 weeks but in August I had a bleed from my spleen. As a result of this I had a bone marrow biopsy...