Familial MPN

After reading through old posts on here I'm quite surprised at how many people have more than one person in their family with an MPN. This has bothered me somewhat as my Father died from a heart attack in his early forties, a total shock to everyone. Increasingly I'm questioning the fact, Is it possible he may have had an undiagnosed MPN? I know that no one can really answer this for me - but what are people's thoughts on the tendency of a familial predisposition to MPNs.

Mary

13 Replies

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  • Mine too Mary,then also my cousins on my Father's side.I too have wondered about the connection.I also needed a stent when diagnosed with P V....does make you wonder.Best Wishes ,Sally

  • Thanks Maz, it's good to know that there is ongoing research.

    Mary x

  • Hi Mary, MPNs are not hereditary, however, there are clusters of families around the world who do have more than one member with a MPN, and not always the same MPN. Research is being undertaken at the moment, the epidemiology study, which is looking into the causes of MPNs and also why some families do have more than one member with a MPN. Best wishes, Maz

  • Hi Maz, not sure what the study entails.... Is it in the UK? Happy to volunteer my sis and me if it would help.

  • Hi Paul, at the moment they have finished phase I and will be moving into phase II soon, that's when they will be asking for people to be involved, the phase I was taking samples, toe nail clippings, saliva etc from people with a MPN and then people without, friends and family members, we will let everyone know. Maz

  • Hi Sally, thanks for replying. I was just surprised at how many other people seem to have more than one family member with an MPN. My Father died suddenly (coronary thrombosis) much to the surprise of everyone, as seemingly healthy. Since my ET diagnosis, I have often thought is there some connection? I think it's only natural to question these things, especially for the next generation.

    Maryx

  • Hi all i know is my Dad had low platelet count and ended up having spleen taken away, and used to have hospital appoiments for tranfusions i recall but he never really talked talked about it he was on a type of chemo pill and he also had rheumatoid Athuritis

  • maybe families can inherit a genetic susceptibility to mpn and/or are exposed to the same conditions that make developing mpn likely

  • My mother had PV and I have ET. When GP first detected raised platelets, I asked him re my mother and he replied 'No it isn't genetic'....however, I was interested that on the hospital notes that were handed to the haematologist on my first visit were the words "mother had PV"...but again the haematologist assured me ' it is not genetic....and 'very very rare in the same family'. Not sure this is particularly helpful! But I have always had a great personal interest in this aspect of MPNs. Best wishes Tinkerbell13

  • It does make you question why in something considered so rare in the first place this should happen more than once in a family?

  • I have post ET MF and a cousin recently died after CML. There does seem to be familial tendency and my four sons get FBC annually. It will be interesting to see what the research comes up with

  • I also have a first cousin who developed 'Hodgkins lymphoma.' Lucky for him he is in remission for over a decade.

    Could be coincidence?

  • My Dad was diagnosed with PV which caused strokes and his mother also died after a stroke. I have ET but none of my 3 sisters are affected, I would be interested to hear about the research into familial prediposition to MPN's.

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