Hello to everyone. First timer here. Only two we... - MPN Voice

MPN Voice

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Hello to everyone. First timer here. Only two weeks into this and on Aspirin and Hydroxycarbamide.

glassaddict profile image
19 Replies

It is all a little confusing so I hope someone can shed a little light. I have critical illness cover but I am unsure whether this condition is covered. Has anone else made a claim? Is this actually a cancer? My haematologist says it isn't?

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glassaddict profile image
glassaddict
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19 Replies
LouisePRV profile image
LouisePRVVolunteer

Hi!

Do you have polycythemia rubra vera? It is actually classified as a rare and serious cancer of the blood - see mpdvoice.org.uk

This is a super support group and website started by leading haematologist and specialist in MPD's.

Don't let this worry you though, because the majority of patients seem to survive for donkeys years!

Someone did comment on critical illness cover some time ago on this site, but have a look at the mpd site as well - you might find more info there. They also run a buddy scheme - I'm a buddy to a couple of people and it's quite nice to be able to chat to someone else who understands how you feel.....not miserable or maudlin, just a help.

I was diagnosed with PRV three years ago and take 10 hydroxicarbamide a week, as well aspirin and also have a few venesections a year - so any questions you may have - ask away - there are quite a few of us out here.

MPD voice have a few patient forums every year where we can meet, chat to consultants and generally get more info if we wish. Again not miserable or maudlin, but really positive support.

Hope that helps.

Best wishes

Louise

glassaddict profile image
glassaddict

Thanks Louise that's very welcoming and I've already had a look around the site and it's great because its full of information and has already answered many of my questions. I've been diagnosed with both Essential Thrombocythemia as well as Polycythemia Vera. It seems like most people have one of the three so I'm extra lucky it seems! I'm very glad to have come across this site and I'm sure ill be loggin in alot.

Mazcd profile image
MazcdPartnerMPNVoice

Hi Glassaddict, welcome to MPD Voice on HealthUnlocked, as Louise has said, we are here to help so if you have any queries please ask, you can email me at maz.cd@mpdvoice.org.uk. Maz.

rubyrubyruby profile image
rubyrubyruby

Hi.

Yes it is a cancer. I have made successful critical illness claims.

Hope this helps.

glassaddict profile image
glassaddict in reply to rubyrubyruby

Thank you to you all for your replies it's been very helpful.

Aime profile image
Aime

Hi I just got diagnosed with PV in July 2012 and have found this website a fantastic help. I was considering putting in a critical illness claim too but haven't got round to it yet as I am still managing to work. Everyone on this site is so helpful and supportive and knowledgeable. Anything I can help anyone with I will because we share common worries, illnesses and needs. Every best wish.

rubyrubyruby profile image
rubyrubyruby in reply to Aime

Hi. You can still put in a claim even if you are working it makes no difference whatsoever.

Hope this helps

Aime profile image
Aime

Hi Rubyrubyruby

thank you - I will put in a claim soon. I think I am afraid it is going to be a hassle with Legal and General and my haematologist!

glassaddict profile image
glassaddict in reply to Aime

Good luck! I'm with the same firm :-) don't worry about your haematologist I'm sure they're used to it.

R8afg profile image
R8afg in reply to Aime

Hi aime

I recently claimed both legal & general and Scottish provident as I had critical illness policies with them. Both claim were successful and the staff at these firms could not have been any more helpful

I would urge you to submit your claim ASAP

Beartime profile image
Beartime in reply to Aime

Hi Aime

I am 43, still working, and was encouraged to put in a claim with Legal & General. I was unsure about doing this & was not at all hopeful about it being successful. The staff on phone were really nice & extremely supportive. MPN.'s are a condition that they are familiar with. All they needed to do was get written confirmation from my GP & they sorted everything. I didn't need to do anything. I am still stunned as to how easy it was to make a claim. Best of luck.

Beartime

Aime profile image
Aime in reply to Beartime

Hi Beartime, thank you for your reply. I did manage to successfully claim on my critical illness policy with Legal and General, despite my haem being doubtful. L&G were very quick in paying out, very professional, allocated me a claims manager immediately (who i didn't need to use) because they settled very quickly - without any fuss. I can't praise them enough, because like you I though it would be a struggle. All the Best Aime

I have just been on the Macmillan Cancer Support website to find some information about work and ET. On this website MPN's are still MPD's and are considered a pre-cancerous condition, I would imagine this is what adds to the confusion for sufferers, GPs, medical professionals, etc.

rubyrubyruby profile image
rubyrubyruby

abi.org.uk/Media/Releases/2...

This article will tell you all you need to know ! If you copy and send to your insurance company they don't really have a leg to stand on!!!

Aime profile image
Aime

Thank you for link - will get into gear and get my claim in.

Elvis-Fan profile image
Elvis-Fan

Hi Glassaddict

Sorry to hear you have two of these conditions. I was diagnosed with ET 4 years but my heamotologist thinks my diagnosis will change to PV over time. I put a critical illness claim in about 4 months ago after reading about It on here. So glad I did, claim was accepted so that makes life that little bit easier now. All the best. This site is a terrific support to people with MPN's :-)

TrickyDicky profile image
TrickyDicky

Hiya, I'd say the same. Put your claim in. I enquired a few years ago when I was first diagnosed and told it wasn't covered, however I have recently re-submitted my claim and it was successful based on the information from the Abi website that Rubyrubyruby has given the link to. Good luck.

Headinthesand profile image
Headinthesand

We made a claim and although my husband is still working full time, it was paid with no problems

hunter5582 profile image
hunter5582

Yes all MPNs are a forn of cancer. They are rare ad many docs, even hematologists, do not have much knowledge or exerience with them. The terms can be confusing and sometimes diagnosis is not clear. If you have Polycythemia, then mutile blood cell types are elevated. Thrombocytosis (platelets), Erythrocytosis (red blood cells), and Leukocytosis (white blood cells). You can apparently be somewhere on a continuum between ET and PV where diagnosis is not clear. That happened to me. I did in fact progress from ET to PV and now definately have that diagnosis. All the best to you.

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