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MPN Voice
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Hi, my 24 year old daughter has been recently diagnosed with E.T. She is reluctant to join herself, feels very isolated, that there is no-one can identify with her.

Similarly, I feel finding support as a parent unlikely.

We attended the conference in London this weekend and I found myself to be younger than most of the sufferers.

Is there anyone else under 50 who is a patient's parent? Would love to hear from you.

Thanks H

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Hi Hilly,

I was diagnosed 9 years ago with ET, I was 35. I totally understand how your daughter is feeling, it’s very isolating at first, but this site is wonderfully supportive, I have struggled over the years as most of us do, but have discovered ways to cope and improve my quality of life. I’m more than happy to chat if you’d like to get in touch.

Wishing you and your daughter well, Regards Anita xxx

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hi hilly,

I am.also recently diagnosed with ET. I am 33 years old and can understand ur feelings and also of ur daughter..But keep hope, they say we can have normal life expectancy.It could have been something worst, so seek.positive side.ET is managable, I am only on aspirin , n Learned to cope to great extent with my disease.

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Hi Hilly, I can completely understand how you are both feeling, it can be very isolating for someone so young, and indeed if you are older. It would probably help your daughter to have a buddy to talk to who is of a similar age, a buddy is someone who has a MPN and knows what it feels like to live with ET every day and the affect it can have on daily life, we do have buddies who were young when they were diagnosed, if she feels this would help her then ask her to email me at maz.cd@mpnvoice.org.uk, contact with a buddy is by phone or email, it is not via this forum. I can also find a buddy for you if you would like some support, we have buddies who are registered with us who are living with and supporting someone with a MPN. Just let me know. I would also recommend that you both read as much as you can on our website mpnvoice.org.uk, and also have a look at some of the videos, there are some with patients and consultants talking about MPNs.

Best wishes, Maz

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I was diagnosed with ET , albeit many years ago, when I was about 30. There were no online sites and the information that was out there was very scary.... this probably isn’t any help to you but what I can share with you is that the last 25 years have been perfectly normal and I do hope that this helps.

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Hello

My 20 yearly son was diagnosed with ET in June this year. Actually, the diagnosis has been changed to PMF following referral to an MPN specialist, but for a few months I was trying to understand everything in the world known about ET - I'm now doing the same with PMF!

I'm not under 50 - I'm 51 - but I'm his Mum and have younger kids too, and am more than happy to be in touch. I feel that I've been through a roller coaster of anxiety but am emerging. Meanwhile my son has been truly admirable - steady and confident- and may be helpful for your daughter to hear from?

I don't know how the buddy system works but I will find out. Meanwhile, do email me direct if you want to - vickiechristie@btinternet.com

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Hi Vickie. I did a general response to this post but I did have PMF and a stem cell transplant and can share some background should this be in your son's future. Although me being a lot older (my youngest transplant buddy was in their 30s and youngest watch and wait in their20s) and the process can be different, the aim and overall objective is the same. Happy to chat if I can help with this aspect

Chris

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Hello Chris

Would be great to be in touch with you directly - thank you so much. Yes, my son will need a transplant....watching and waiting at present and he continues to be mostly well and carrying on a university happily. Fantastically one of his sisters is a 100% match. How should I contact you?

V

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Will email you as in Spain til Sunday.

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This site and the people here are excellent. However, it could be that your daughter is more familiar with Facebook and if so there is a private page called MPNForum with 1000+ worldwide contributors that either of you could try. It can be used to ask questions or just watch. It is also a free online magazine with lots of articles from patients and doctors. While MPNs are more prevalent in 'more mature' patients there are many younger ones too. And of course there are many who started young and are still flourishing; a good thing to see! The buddy system is excellent. I was delighted to see one of my buddies, Emily, who is doing so well, speaking on Saturday! 😀 there is lots of help out there, good luck with using it.

Chris

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Hi

I was diagnosed at 35 (am now 46) with ET. At the time my consultant was surprised because I was so young but I’m now hearing more and more people being diagnosed early.

I work full time and have a good career in the broadcasting industry. Hopefully my life expectancy will be the same as everyone else, but...

It is always in the back of my mind x

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Hi Hillyk,

I am 29 years old and I've been diagnosed with ET few months ago. It seems that I might have this condition for about 3+ years. I found very useful all the information that I found about this condition. Keeping up with all the research done in this area makes you feel much better.

all the best,

Madalin

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Hello, I was diagnosed aged 16 and I’m now 36. I would highly recommend your daughter getting a buddy and this site is also great for questions you or your daughter may have. It took me a while to get my head around the diagnosis but I’ve not let it hold me back. I was particularly worried about having children, but had 2 fairly straight forward pregnancies and have 2 daughters 7 and 4. Take care

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Thank you. This means so much to me.

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Hello Hilly ,I am a lot older than you but our son has PMF diagnosed at 37 .He is now 48 and keeping very well.I think whatever age we are we never want our sons ,daughters to have problems before us .The buddy system seems an excellent idea ,which in turn may help you . I hope so.Take care both of you. Bye Gill

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It appears you've landed just where you wanted.

I was diagnosed a month ago and I'm 60. I have one daughter and she has been going with me to all appointments. I think it's harder for her to wrap her head around than it has been for me. I've shared my forum experience and suggested she could join too. My experience here has been incredibly helpful.

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I was first diagnosed at 47, I’m 72 now. To begin with I was on interferon injection every day for 8 years. Then I went in to remission for about 5 years. My platelets rose again when I was 61 when I went in to Hydroxycarbamide and have been taking it for 11 years now. It is a way in life now. I am on lots of other medications but apart from getting very tired I lead a ordinary life.

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