Just joined

[mystic_shrimp]

Hello to all of you.

I've just found your forum, and am hoping to find as much out as I can.

I'm 48 and work for the ambulance service. However, due to my recent diagnosis of Myelofibrosis,I will probably be looking at stepping back from front line duties.

I already suffer from ET as well.

Trying my best to keep my optimism levels up, in light of my latest illness.

Take care

[Otterfield]

Welcome! I also progressed from ET to Myelofibrosis and there are a few others here in the same situation. There will always be plenty of support and advice here.

[SoledadBarcelona in reply to Otterfield]

Hi,How long was the progresión? Are you aware what things can provoque it? Thanks

[Otterfield in reply to SoledadBarcelona]

I had ET for 19 years then was diagnosed with MF in 2020. Sadly it just happens to some of us. Hopefully one day researchers might find a way to prevent it

[SoledadBarcelona in reply to Otterfield]

Thanks. I wish one day people find a way for us. But, 19 years is O.K. in the progression, isen't it?

[Otterfield in reply to SoledadBarcelona]

I'm glad I had 19 years of feeling well but it's not okay when it happens! Some people don't progress though.

[Cja1956]

Welcome! I am also post Et MF; diagnosed in 2008 with ET jak 2 positive and then I progressed to MF a few years ago. As Otterfield said, this is a wonderful, supportive site. It has helped me tremendously.

[Mazcd Partner MPNVoice]

hello and welcome to our forum. We understand how you are feeling, it can be very difficult to stay optimistic sometimes, so I do hope that being part of our community will help you, you are in the right place for help and support. With best wishes, Maz

[MFBMT2011]

Hi mystic shrimp. I was diagnosed with Myelofibrosis 11 years ago and went the SCT (Stem Cell Transplant) route a year later aged 58.Tteated In London courtesy of out brilliant NHS. A tough risky journey but worth it and certainly worth a look for a youngster like you. It might not be for you but worth finding out about Happy to help with any questions as will several others here. Chris

[mystic_shrimp in reply to MFBMT2011]

Cheers for that info, Chris. Will look into SCF.

[RobinBrum]

All the best to you and welcome! My suggestion is that you arm yourself with as much information as you can. It can be a bit daunting. Exercise and a positive attitude can help enormously. I am five+ years into MF, and the lockdown period was very bad for me - I had to stop going to the gym and lost a lot of muscle strength. In your 70s, that can be very important. At the same time, my platelets tanked. So I am slowly, slowly, trying to rebuild my strength. Currently doing light exercises, daily yoga and breathing.

[hunter5582]

Welcome to the forum. Glad you found your way here. You will find a lot of support and information here.

Sorry the hear that your MPN progressed. This does happen to some of us. I also had ET, but in my case it progressed to PV. I was diagnosed in my 30s and it progressed about 8 years ago. Symptom load has picked up a bit due to the MPN and its treatment. However, I have had and continue to have a good life.

The good news is that treatment options are improving. I hope you will find the right combination of treatment options to maintain a high quality of life. This is a great place to hear about other's experiences managing MPNs.

All the best.

[Bobadog]

Welcome to this wonderful ,supportive ,and informative group.I do hope it helps you stay positive

[Pte82]

This group is a great resource, I'm glad you found it. One pass along is to be on the lookout for products containing benzene and toluene as they are promoters of bone marrow disorders. Some suntan lotions recently made the news because they contained benzene.

[JaK2ET]

Welcome to the forum and best of luck to you!