Was diagnosed with ET 13 years ago...am approaching 40 this year(!) And have an 8 year old daughter.....just wondering if anyone knows if she might inherit ET from me...my consultant is pants and doesn't listen to anything I say about side effects I'm experiencing etc and looked blankly when I asked if my daughter could inherit from me. I have had bone marrow aspirations etc done recently and no jak2 mutations or anything else found.....I take anagrelide daily to manage platelet count but most of the info I get is from the internet....any help would be greatly received....
Thanks all
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GK40
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Hi, MPNs are not hereditary, some families can have more than one person with a MPN, and not always the same one, so for example a sister with ET may have a brother with PV, this information on our website might help you
I would also urge you to read as much as you can about ET on our website mpnvoice.org.uk all the information on there has been written by leading experts. There are also some great videos from patients and specialists, and real stories. Best wishes, Maz
Hi, I have PV (JAK+). When I was diagnosed I asked prof Harrison whether my children should be tested, and she said there was no reason to do so, as it was very unlikely they would have it, too. As she is very knowledgeable about these diseases, the biggest authority in the country, I trust her, and haven't worried about it.
Hi, it is not hereditary (i.e. the mutated gene is not passed down the generations) but it is familial, meaning some families have a higher risk of having MPNs (for typically unknown genetic or environmental reasons). It is uncommon but i have read of several cases on MPN sites and it could have happened in my own family: I have PV, and on my mothers side one uncle had MF and a grandmother leukaemia. I will have my teenage sons tested at some point, but my haemo says there is no need to do it now if they are well an healthy. All the best, Susana x
Hi, I'm have similar story I'm have MPN over 28 years , 27 ET, 1 year PV, I'm was 33 when I'm have simptom , but 10 years after I'm was dx with ET. My mum had bones marrow cancer, and my heamo. said not conected . When my doughtier was 37, and her platares was about 350 I'm push her at my heamo. Jp doktor said not need to go heamo.becouse blood test was ok , but when heamo . did all test inkluding jak 2 , everting was ok , only she have in blood and BMB , paraprotein (only 3) . Heamo.explain from paraprotein after in life she can have bones marrow cancer or limfoma , or can have this and never develop cancer, but must every 6 month checking blood , if paraprotein go up. We are in shock , but after 3 years becouse paraprotein is same , she have Ono more helthy girl.Simila was with my son , he have Jak2poz. BMB ok, in blood hct 44-50 platets 350, ichi skin after hot shover ,sametime migrene like me before in his ages, he is 34. Heamo. said interesting case , and he belive jak 2 pozetiv(like me) test not correct . He like doing panel test and reapit jak 2 .My mum have BMCancer, my doughtier have paraprotein in BM, my son and me have jak 2 poz., And nobody else in family have blood problem.I,m test my kids after 35, you have time for testing(only if have simptom, maybe you can). But I'm think we with jak 2 pozitiv must test our kids, after 35 years .
My dad has a herediatory type. He doesn’t have the jak2 gene mutation and it took ages
For them to find out what he does have, he has HB Kempsey. It’s extremely rare and nothing about it online. His mum has it, as do two of her sisters, and some of their children we have now discovered. I don’t have it and I’m about to have my son tested. They can’t say if it skips generations or not. None of them have the jak2 mutation. With HB Kempsey I’m told you are born with it so it should show in your blood tests straight away. It did show in my dads when he was in his 30s but no one picked up on it! He nearly passed out in his 50s went to the docs and they sent him to have blood taken right away, it was so thick it clogged the equipment up! We are in England but the rest of the family are in Ireland, nan lives in London. I think the last know case was in Ireland and a few in Europe. When he was diagnosed with Polycythemia he told his specialist that’s odd, I’m sure that’s what My mum has. They said no just a coincidence it’s not hereditary. However they have had to backtrack and confirmed that it is. Nan was retested as she was diognosed with a different type back in the 50s but has been re-classified now as the HB Kempsey. They are still learning things now and will continue to. His specialist is now in contact with hers in London. They have been really lucky as everyone has been so helpful. Always useful to get tested just in case it’s only a blood test and a gp shouldn’t turn you away. I’ll still make sure my blood is tested every 10 years or so!
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