Who's the youngest?

[lsharp10uk]

I'm 37. How old are you?

[Karen1970]

47 x

[JaynieQ]

I’m definitely not the youngest! 😊

[Sand-Dancer in reply to JaynieQ]

Me neither JaynieQ 😊

[zvinkovic]

Hi,

I'm 38 now, diagnosed with ET 19 years ago at age 19.

[Timjonze]

Just ahead at 38. Docs believe I’ve had it for about eight years or so - hard to imagine that during all that carefree time I had a blood and bone marrow disorder!

[christiev]

My son is 21. Diagnosed with Myelofibrosis (PMF) when he was 20

[Timjonze in reply to christiev]

Sorry to hear that Christiev - how is he handling the diagnosis? Is he on medication?

[christiev in reply to Timjonze]

He's doing really well actually and carrying on at Uni, which is great - I reckon I have found it all more challenging than him so far, but perhaps he's handling it all well because he's currently asymptomatic. It was diagnosed after an unrelated blood test that revealed very high platelets etc and lead to further tests and a BMB etc. He is CALR + Type 1 which is less scary than some. He takes no medication at all but has very regular blood tests and spleen checks (significantly enlarged but not out of ribs yet) to monitor it all. Has to drink masses of water. One of my daughters is a 10/10 stem cell match so we will go that route when the time comes. Thank you for asking - its been great to find people on this forum!

[Timjonze in reply to christiev]

Sounds like a trouper. Pleased he’s getting on with life (took me six months after diagnosis before I continued as before!). I’m sure it’s been a horribly worrying time for you but it sounds like he’s in as good a position as possible for someone with MF - I’ve heard of people getting 20+ plus years before it gets serious and who knows what new drugs we will have by then. Even if a SCT is needed then he has a perfect match waiting - and the odds for good outcomes are improving every year. All the best and - easier said than done! - try not to worry too much x

[pj1963 in reply to christiev]

I also want to say that I'm sorry about your son. What a worry for you. But he clearly does have age on his side. You'll have read about all the developments going on, and it is good news indeed that his sister is a perfect match.

[christiev in reply to pj1963]

Thank you so much - yes, he's young, slim, active, fit and in all other respects a very healthy young man! So he's starting from a pretty good place. And he's very well monitored and I am confident will be well cared for when the MF progresses which I guess it inevitably will.

But isn't great that there are so many advances in the research in this field? I have a daughter who's studying medical science at uni and she keeps a very close eye on all the progress- she's extremely optimistic about the relatively near future for all people with MPNs and for people needing stem cell transplants. So, the MPN world is certainly a challenging one, and has run me through the mill a few times, but there's plenty of room for optimism!

[wendycu]

44, diagnosed at 32. Blood clot in my brain at age 30. Xx

[lsharp10uk in reply to wendycu]

Sounds a similar situation to mine. How are you doing these days?

[wendycu in reply to lsharp10uk]

I’m ok thank you. Just getting over the shock in having MF too, (scaring on my bone marrow)

The doctor want me to think about changing my medication to help me not be anemic anymore but one of the side affects is clotting, headaches, heart pain and many others. Catch 22.

Still thinking about it.

I live Day to Day but very tired by the afternoons.

I hope you are well. Xx

[Janll in reply to wendycu]

Wendy, my daughter in law was 20 when she was diagnosed with a ‘blood disorder’ and 20 years later diagnosed with MF. She is on medication for anemia and anti clotting. She is doing really well. Has two children, 33 months and 9 months old. She goes for infusions every 3-5 months. So, a positive story and I’m sure there are thousands more. I’m 70 and diagnosed with Mf a year ago. Once I got over the shock I have been going better and better. And still not on any drugs. But that’s my story. I do believe with all my being that to think positively and live positively day by day can make all the difference. All the very best to you. xx Jan

[ChelseaF]

I have heard of children with MPNs. I am 40 and still have no formal diagnosis. Presumed ET by process of elimination. I have had high platelets since I was 28, possibly before.

[Elab]

I am 41

[Trocken]

I’ve just turned 38, my consultant believes that I too have had it for atleast the past 10yrs, thankfully had 2 children in that time!

[OxonAndy]

49

[Ewadd]

My son is 13, he was diagnosed with ET when he was 10.

[CommonDaisy]

I am 27, diagnoised at 13

[robbjoy]

will be 56, diagnosed at age 37

[hybiscus]

56, diagnosed two years ago.