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Heidi’s MPN Story – An Increasing Trend in Patient Advocacy

Heidi’s MPN Story – An Increasing Trend in Patient Advocacy

Just wanted to share our latest work from PV Reporter, as we see an increasing trend in patient advocacy! - You are your own best advocate and should become knowledgeable about your MPN. The resources are growing and that is a good thing for all patients and caregivers.



PV Reporter

5 Replies

It's Wether your gp will accept what you have learned about your mpn many won't accept you as an expert on your condition what then ?


That's an excellent point Shelly and many doctors in the U.S are the same way. First of all, don't be afraid to make a switch if you are not happy with your present doctor. See an MPN specialist to work with you and your local doctor and put a treatment plan in motion.

What I have found is if you bring in research reports from a credible, reliable source....a good doctor will listen and understand you've done your homework. You need to help make a case for the treatment plan you (and your doctor) think is best.


PV Reporter


Problem is there is little written information to put to doctors on unclassified mpn with mf which is what I have and when you reiterate what you have been told you aren't believed so you stop going to the professionals for help and self medicate where you can


Wow it's a good job you have been researching yourself David.

My husband has pv jak2 positive he's been on hydroxy for 6 weeks now it's certainly doing the job. He feels so much better in himself. He's had two check ups and everything was good.

He's back on 21St December for another check up.

He takes 1x 500mg per day. The consultant said it may need to be upped to 2x 500mg if his results stay as good as what they have been then he will leave him at the dose he's currently on.

My husband was so frightened to take hydroxy he now wishes he stated it last year!



I agree whole heartedly about patient advocacy - I was lucky that my wife pushed me into questionning the opinion of my GP.

Initially I was very aneamic with low red/white/platelet counts and on/off antibiotics every other week.

"Don't worry, it's winter and a bit of iron will do you some good'

This lasted a couple of months until a Doctor friend (not my GP) took a look at my blood test counts and agreed that something wasn't quite right; he contacted my GP and talked things through and my GP refered me to my local hospital that has a 'Blood Disease' section.

A month or so later I got the result: Primary MF : 'the only cure is a marrow transplant'.

Where I consider myself fortunate is the specialist had no hesitation or ill feeling refering me to one of the leading specialists in France (who fully confirmed the diagnostic and ultimately the need for a transplant), and my GP has fully accepted that MF is out of his depth and encourages and aides access to my specialist.

It's a life changing moment but there's no point in hiding - if you don't ask you won't get help.

Best wishes to the MPN familly.

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