MF for 30 years

[Bullace]

Hello

I was first diagnosed with MF in my late 30s when I had two young children. It had a massive effect on my life, as although I didn't have any symptoms at that stage, I was told that I might become seriously ill and potentially die within 10 years. This meant that I gave up worrying about my (non-existent) career and spent my time living life to the full as much as I could. I am now in my late 60s and on a low dose of ruxolitinib thanks to wonderful NHS. I have an enlarged spleen which makes me look pregnant, but it doesn't give me much trouble and I wear baggy clothes to disguise it. I have a pretty good quality of life and am able to do most of the things I want. I have two adored grandchildren. You can have a good long life even though you have MF provided it is well controlled.

[piggie50]

What a lovely story. A true inspiration to the newly diagnosed.

Judy

[Otterfield]

This is a wonderful thing to read. Thank you for sharing it. I have recently been diagnosed with MF, having progressed from ET, which has felt like such a shock, especially as I was one of the luckier ET sufferers and didn't have many symptoms at all for the nineteen years I had it. Now I am coming to terms with fatigue etc, but already benefiting from Ruxolitinib. Your positive attitude is inspiring.

[JojoWonder]

Inspirational! Thank you for sharing x

[Handysmurf]

Thank you for sharing - you hit the nail on the head - live life to the fullest - and worrying is detrimental to well-being.

[Cja1956]

Great story. Thanks for posting it. You have a wonderful attitude which helps. I was diagnosed with ET jak2 in 2008 at age 52 which progressed to MF last year. My biggest fear is that my meds will stop working and I will need a SCT. But your story gives me hope, so thanks again.

[Bullace in reply to Cja1956]

I'm so glad my story has helped you and I wish you all the best. I have been lucky that my disease has progressed slowly so far, but there's always the chance that the meds will become less effective eventually. Let's just hope this doesn't happen too soon. There are usually lots of other options, or so I'm told by my consultant....

[JediReject]

Hi Bullace, , a truly inspirational post that will give to hope to many I'm sure. I knew a chap who lived with MF for over 20 years into his 70s but he travelled to the US from UK for his treatment and did well. I'm not sure if it was the cause of his death because he passed before I had chance to meet him.

30 years managing your MF from such a young age is a possible record. I was 45 but already had a heavy symptom burden so there was no way I was going to survive without drastic intervention.

Long may you continue to live alongside your ' friend' within without it troubling you any more than it is now.

Regards Chris

[Bullace in reply to JediReject]

Thank you Chris. Good luck to you too. All good wishes

[hybiscus]

Thanks so much for inspiring us all MPN patients 🙏❤️

[JT_Marlin]

Very inspirational! Thanks for sharing. I was diagnosed PV earlier this year at age 40 and spend my time worrying about disease progression. A story like that gives me hope! Thanks.

[Mazcd Partner MPNVoice]

Hello Bullace, thank you for sharing your very inspiring and honest story with us all, I am sure it will help many people to feel less anxious about their MF. Best wishes, Maz

[Innessant]

Great story. 30 years with MF must be close to a record. It makes us all feel more hopeful asymptomatic or not. Thanks,

[Camelian]

Thank you for your very inspiring post it's just what I needed to read as I'm awaiting results from a BMB and have been very anxious about what I'll be told. Thank you again it's so reassuring to read positive posts.

Kind regards

[ja66ck]

Thank you!

[Timjonze]

Lovely to hear - thanks for sharing