ET at young age?

[shiela23]

does anyone diagnosed ET at young age? im only 29

[Mandy-moo74]

Hi Shiela23I was diagnosed at just before my 18th birthday, spent my 18th in hospital in isolation so I have had ET from a young age well medicated now and stable

[Di266]

Hi, I had portal vein thrombosis when I was 32 and it took a further 2 years to realise it was due to ET. I’m now 55.

[Alice_22]

Hello. I was diagnosed with ET the day after my 21st birthday - and likely had it a lot longer. I’m now 26

[Gaithersburg]

I was diagnosed with ET at 27 and I am now 54 years old so have had it half my lifetime!

[HFrank]

Usually MPN at young age is belong low risk PV or ET. There are some review paper for you which could be discussed with your doctors.

journals.lww.com/hemasphere...

For low risk PV, there is great SOC challenge at 2021. I believe everything will go better tomorrow. (Sorry as my limited knowledge, the clinical is for low risk PV but ET)

thelancet.com/journals/lanh...

[DJK12]

I was diagnosed with ET at 32 but it became obvious in hindsight that I had had it for at least 10 years before that. I am now 67. There have been astonishing strides in medical knowledge and treatment since then and that continues - no one wants to have an mpn but treatment and research now are very very encouraging. Diana

[hunter5582]

I was diagnosed with ET in my mid 30s, about 30 years ago. It progressed to PV 8 years ago. Now at age 66 I am doing well despite the occasional challenge and health learning opportunity. I have live a rich life and continue to do so. Please know that you can do the same.

[Maymagic]

I am 31 now and was diagnosed last year. I have probably had it for over 10 years as I have had high platelets and symptoms for that long, and I had a stroke when I was 28 that was probably due to the ET.

[HFrank]

Just read about PV/ET in young patients, and the result maybe make huge difference SOC approach now. The continue update clinical result will be followed and hope it is worth for you.

onlinelibrary.wiley.com/doi...

Best result

[Aneliv9 in reply to HFrank]

I didn't have access to full version of the article so the only thing that understood is that can well control blood counts. I was hoping to see that can slow down progression

[HelixNebula]

I'm 31 yo male. Had a TIA stroke earlier this year. There was a blood clot in my carotid artery and they removed it (carotid endarterectomy). At the time of the stroke my platelets were at 600,000.

After that I was diagnosed with ET JAK2+. Since I had a history of thrombosis, I'm considered as a high risk patient. Due to my age, my current hematologist decided to try Peginterferon alfa-2a (Pegasys) and I've already done 10 shots of 90 mcg. I'm going to see an MPN specialist in September.

[Aneliv9 in reply to HelixNebula]

I hope you are well know! Have your doctor make any comments about the future treatments or prognosis on general?

[HelixNebula in reply to Aneliv9]

My JAK2 allele burden is very low, about 5%. There is a small chance to achieve hematological and molecular remission where JAK2 mutation won't be detectable.

I'm going to see an MPN specialist soon and I'm really looking forward to hear what he says about the future treatment and prognosis.