Newly diagnosed : This is all very new to me. I... - MPN Voice

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Newly diagnosed

Devilgirl profile image
7 Replies

This is all very new to me. I have been diagnosed with JAK2 POSITIVE myleproliferative neoplasm in the last few weeks. I'm presuming ET as it's my platelets that are high. Currently I'm low risk, platelet count in the 700s but haven't been given any contacts for advice. I'm looking to travel abroad this summer & insurance through bank won't cover this so not sure where to go.

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Devilgirl profile image
Devilgirl
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7 Replies
piggie50 profile image
piggie50

Hello Devilgirl, welcome to our forum. You will get lots of advice if you need it, just ask. If you check out the website mpnvoice.org.uk you will find lots of information you can trust, including travel insurance companies that will cover you for little or no increase in premium. I have used Staysure for many years, although I have just changed to Get Going as it was quite a lot cheaper for the same cover. I usually take out an annual policy.

Very best wishes

Judy

Devilgirl profile image
Devilgirl in reply topiggie50

Thanks I was getting very confused at what websites I should look on as many just seemed to explain what the condition is in very technical terms but no practical advice. I will look on mpnvoice site & check out the suggested insurance companies.

Mazcd profile image
MazcdPartnerMPNVoice

Hello Devigirl and welcome to our forum. As Judy has said, have a look at our website mpnvoice.org.uk the information on there should help you, I would also suggest you look at some of the videos we have of consultants and patients talking about their MPN journey. And of course, you can ask us any questions you might have, we are here to help and support you. Best wishes, Maz

Devilgirl profile image
Devilgirl in reply toMazcd

Thanks my consultant gave me the Bkoowise book on MPNs but otherwise nothing on where to turn for practical advice & support. Once the stress of waiting for a diagnosis was over I was left feeling rather bewildered & alone. Just knowing this group is here has helped already.

Tamsin

mhos61 profile image
mhos61

Welcome to the forum Tamsin. You will find great support and advice here.

I have used ‘Staysure’ insurance since being diagnosed with ET.

Mary x

TrickyDicky profile image
TrickyDicky

Hi devilgirl. I'm ET Jak2+. Platelets fluctuate between 700 and 900. Diagnosed in 2008. I manage to get affordable travel insurance every year. I have always used the Halifax. MPN Voice has been really helpful to me. I would recommend attending a forum if you can - you hear from experts and meet others in a similar situation to you.

Spirit123 profile image
Spirit123

Try staysure insurance they covered me and I have ET

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