MPN Voice

Jak2 positive and MPN

My name is Catherine 26 years young. Diagnosed with Jak2 positive, mpn, ET. I was diagnosed after having my son premature at 29 weeks. I had a placenta abruption and emergency C section. After having the healthiest life ever I have realized how much we take health for granted. I am praying everyday that technology today finds a cure for MPN

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Hi Cathy, welcome to the forum, sorry to hear that your baby was so premature, and that you have been diagnosed with ET JAK 2 positive. I also have ET JAK 2 pos told nearly five years ago now, but feel that I have had it for many years before, as when I had my daughter she was nine weeks prem, and like you I was very healthy but I ended up with pre eclampsia so she was delivered by c section and lucky for us we both survived she is now 37, but after that my health suffered till as I say five years ago I had the JAK 2 mutant test done and was told that I had ET, in a way it was a relief as it explained all the problems I have had over the years.

Now I make sure I keep fit, eat plenty of fresh fruit and veg, inclined to eat more fish, and chicken with red meat now and then, also drink at least 2ltrs of water a day, and enjoy life to the full.

You will find here that there are a lot of lovely people who have had an MPN for many years and are still going strong, they are all a great and very rare breed, plus they are all so helpful with some really good tips. If you want to get in touch with Maz, our forum coordinator she can send you some books on living with an MPN, and if you want she can also arrange a buddy for you to talk too.

I do hope your baby boy is doing well now, and that I am sure he will grow up to be strong and healthy, and yes let’s hope that one day that they will find a cure for all MPNs

Jean x

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You have been dealt with quiet a lot to take on board.

How far are you on your unique journey?

This site will be able to help and support you and your family to adapt.

I wish you well. Ask lots of questions.

By now you will realise that no two people are alike but we share common features.

The trick is to keep calm, carry on and if you do not touch wood when you wake up, you have another opportunity to make new friends.

I wish you well.

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I also was born at 28weeks and have celebrated my 64birthday.

Life is a challenge and I have learnt to live it every day. Regards (Roger41)

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The concern for most of us here is progression risk to MF. My understanding is that progression risk significantly lower for ET (versus PV) plus progression risk for both ET and PV increases as you get older. Hence you should be very low risk. Also symptom burden less for ET.

Are your Platelets over or under 1,000?

Please stay upbeat, MPNs have been under researched in the past but this has now changed and there are lots of promising targeted treatments in trials such as RG7388. You may be started on Peginteferon if your Platelets are over 1,000. This is a broad brush drug but effective albeit some experience side effects. Ropeginterferon should be out next year, appears even more effective and better tolerance.

My view, and I’m 62 with PV, is that I’ve just got to stay in good nick for five years and the medics will have discovered how to stop progression. An outright cure sounds trickier but our primary requirement is stopping progression and removing symptom burden.

There are people posting on these various MPN Boards who have had ET for 30 years and are fine. But I stress again, 30 years ago was like in the Stone Age! Knowledge and potential treatments now increasing exponentially. You should be absolutely fine.

The critical advice is make sure you have a Hem who you trust, who properly understands MPNs. And eat well and stay fit.

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Hello Catherine, welcome to our forum, as you can see from the replies you have received so far, the lovely people on this forum are very supportive and helpful, so any questions you have please do ask. Hopefully you have read the information on our website mpnvoice.org.uk and looked at some of the videos. If you would like any of our booklets please email me at maz.cd@mpnvoice.org.uk with your address and I can send them to you. Best wishes, Maz

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Hello Catherine,

Welcome to this friendly and supportive forum. I’m sorry that you have had to become a member at such a young age.

My advise to you would be to educate yourself as much as possible from reputable sources such as this site and ‘Patient Power MPN.’ Be very wary of some sources!

Out of all the MPNs, ET has the better prognosis. It may well be that you will only be put on aspirin because of your age. It is such a shock when you are diagnosed. For me, having the support and detailed information from this site was immensely helpful. I hope it will be for you too. Ask as many questions as you want and someone will answer.

Mary x

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Cathy

Here is video link out on Patient Power today. Also 26 year old with ET and how she is coping.

Hope of help

patientpower.info/video/sam...

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Awesome! Thanks for sharing this Paul. It gives me hope :)

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