Probability of ET in family: I have JAK2+ ET... - MPN Voice

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Probability of ET in family

Devilgirl
Devilgirl

I have JAK2+ ET diagnosed in Jan 19 & have just found out my dad is on clopidogel for 'sticky blood' having had a TIA many years ago & a blood clot behind his eye, his 2 sister's also had several TIAs & on either clopidogel or waferin & my niece has had 2 miscarriages put down to having 'sticky blood. Non have ever been tested for MPN. Is it possible they also have /had (1 aunt me mentiond above died of a heart attack) ET?

Tamsin

11 Replies
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Yes. I have ET and my aunt has polycythemia. There have been studies that have verified that if you have a MPN then your relatives are at higher risk.

mpncancerconnection.org/201...

Hi Devilgirl,

I posted a question awhile back in regards to the question of ‘Familial MPN.’ The answer I received back from Maz (administrator of this forum) was, MPNs are not hereditary, but there are a small cluster of families around the world who have more than one member of a family with an MPN, and not necessarily the same MPN. Indeed, there are members on this forum who have more than one member within their family with an MPN. Maz also stated that there was research being undertaken into ‘Familial MPN.’ I’m not sure where they are with results on that research yet.

I think it’s a very interesting question. My Father died suddenly from a heart attack in his early forties. When I was diagnosed with ET it did make me question was there any connection.

Mary

JackLina
JackLina in reply to mhos61

i really have my suspicions. Particularly when there has been so little research in the area and testing for these is so rare. Who knows who has these 'defects'? Nobody until they're testing everyone related to one who has. All the best x

Hi Tamsin,

I have ET JAK2- and my mother has PV JAK2+, so we are a bit like two terminals of a battery! My maternal grandmother died of an incredibly rare form of leukaemia... and I can't help but wonder if there are a cluster of "wonky" genes that all we three had in common that gave us predisposition to some sort of blood disorder.

I expect that lots more will be discovered over the next few years as genetic studies start to shed a bit more light on the subject.

Best Wishes,

Peter

Hi Devilgirl, I have ET.... my older sister passed from MF. I have mPL mutation. When my sister was ill they didn’t yet test for mutations. I sure would love to know if she had the same mutation.

JackLina
JackLina in reply to Cookiebaker

I'm sure my mother had this. she demonstrated so many of my symptoms but as you say, they wouldn't test for something not discovered yet, would they? She died in 2004. ATB. P.x

NewBloom
NewBloom in reply to JackLina

Hi, I had the same with both mother and grandmother. Both had various clots, mild stroke and each passed away with brain. bleeds back in 1970's and 1990's. Been convicted somethings in the family.

Thanks for the replies as my dad is within the same hospital trust he is going to see about getting his heamotologist to confer with mine if possible. I'm also going to suggest my niece ask about being tested when I next speak to her.

Tamsin

mhos61
mhos61 in reply to Devilgirl

Keep us updated!

I’ve been studying gene testing and what they mean this week. Of course we have our parents’ genes, which means certain gene mutations or tendencies. The question is, if the environment and our lifestyle have caused these weaknesses to get turned on and express themselves, causing tendencies to certain illnesses. I’m really looking forward to which genetic news the next years will bring. Lots of studying and testing going on! I never believed that this is an inherited illness, but who knows in which cases? In your case, definitely. Get everyone checked! My grandmother (at 57, 1947 in a Greek village during the civil war) was found dead in bed in a pool of blood that came from her nose. She had nosebleeds for 2 years before that. Perhaps she had ET. We will never know. All said, stroke. I woke up last Saturday morning and blood was running like a faucet out of my left nostril, on pyjamas, bed, floor. 1‘20“ til it stopped on my way to the hospital. The ENT couldn’t see where the bleeding came from. Scary. I (54) was terrified to go to sleep and not wake up in the morning. I didn’t take aspirin until today. My thrombos had dropped almost 300T in the last 2 weeks and the aspirin should have been reduced. I’m a „hopper“. Thrombos go up and down. Frustrating. I wish I could test stickiness at home and adjust my meds without it being a guessing game ever 6 weeks!!!

Scary. I feel so lucky that I just have all the side effects ......

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