New to this community!

Hey! I am Jessie, I am a 28 year old female, and probably like most of you, I found out about my condition completely by accident.

I learned that I am JAK2+ in August 2016. I had my first BMB February 2017, and I am in "the very early stages" of ET. I have higher Platelets and WBC and no iron is being made in my bone marrow. Thankfully, I don't need to have treatment as of yet, because my doctor says it will be more harm then good. But, I will be monitored every 6 months.

I look forward to getting to know you all. I know that this condition is rare, so I find it kind of lonely, due to the fact that no one that I know of has this.

17 Replies

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  • Hello Jessiefaith, welcome to our forum. We know how you feel, it can be very difficult to explain to people that you have ET when not very much is known about it, but you have come to the right place here. You will get lots of help and support from the lovely people on this forum. I would also urge you to read as much as you can on our website about MPNs and the various medications, we also have some great videos of consultants talking about each of the MPNs, medications, studies etc, and also patients talking about their journey with their MPN, there are also some great real stories you can read which are very inspiring. I can also send you the details of our buddy program, this is where you are put in touch with someone, a buddy, who has the same MPN as you so can give you help, advice and support from the perspective of someone who really does understand how you are feeling. If you would like any information then please email me at maz.cd@mpnvoice.org.uk. Our website is mpnvoice.org.uk. Best wishes, Maz

  • Thank you for your reply and advice! I will definitely do my research.

  • Hi Jessie, I would just like to welcome you to the forum. Like you, I have ET (jak2+) and also diagnosed in 2016. I am on aspirin and because of my age (61) I am also on hydroxy. The only significant symptom I suffer from is fatigue - but at the moment I'm running on a 'full engine.' Maybe the spring weather has a positive psychological effect?

    Anyway, that's enough about me. Drop in from time to time just to update us or to ask any relevant questions.

    Mary x

  • Hi mhos61,

    Thank you for your reply! I also suffer from fatigue, but my Hemotologist said that that wasn't caused by my condition and by rather other life circumstances. Do you think he's wrong? I see that that is probably the most common symptom that people with this condition complain about.

    Jessie

  • Hi Jessie. Welcome to the forum and sorry to hear about your diagnosis. But welcome to a very exclusive club.

    Loads of helpful tips and info here, and loads of really supportive people. I guess everyone reacts differently to the news, but it can be quite difficult to take it all in. I'm early on the ET road too - formally diagnosed in January and JAK2+. Currently on aspirin only.

    Getting your head round the fact that the condition is incurable can be a downer. I always try to focus on the positives. It's a condition where there is a very good chance that you can live a very long and full life. So plenty to be positive about. And there is always a good chance that medical advances will break through that "incurable" label in our lifetimes. So if I get down, and think the "why me" question, I normally give myself a slap and tell myself that there are far worse conditions out there.

    Ask questions; ask for support as it's freely given on here by people who know far more than I do; and drink water like a demon. Keep fit and healthy and try not to worry (too much). Good luck. 👍🏻

  • Hi Jessie,

    Welcome to our special and very exclusive club. You are part of the family by just coming here and there is loads of help and support, so hello my friend.

    I have exactly the same condition as you, diagnosed a year before you, but with all the help and advice that I have received here, I have coped well.

    Just remember that no question is too small to ask and we will all help if we can. Sometimes, the more you understand the disease the better you cope.

    Do try and drink two and a half litres of water a day. The hydration really helps and try not to fret too much. I hope that you are on daily baby aspirin as it will make your platelets less sticky and help with any damage that sticky platelets could cause, especially if you take plane rides.

    Big hugs and a very warm welcome Jessie.

    Marcia x

  • Thank you for your response. That's very interesting when you talked about plane rides. It might explain why I feel the way I do when I fly. ☺

  • I mentioned the aeroplanes because sticky platelets could cause a clot especially when flying. I have to take aspirin and hydroxy and have had a couple of TIAs so am considered in the high risk stroke category. The water is a must, it will make you feel so much better.

    Hope you stay well Jessie and if you need any more help, do come back in periodically.

    Hugs,

    Marcia

  • Hi Jessie. Welcome to the forum. It is lonely in the beginning but this family are amazing and always available for advice or sympathy. I don't know what I'd have done without them! I wish you well. Mel x

  • Hey Jessie... :)

    Welcome to our little club. You will find that this forum is quite possibly the best thing you have discovered since learning of your MPN condition. If you ever have any questions about anything MPN... there is a wealth of information available here.

    Best wishes

    Steve

    (Sydney)

  • Hiya Jessie and welcome to the forum. I know it's scary and confusing when you are first diagnosed, but you will find lots of help and advice from all the lovely people here. No matter your question, there will be someone here who will be able to answer it for you.

    Lots of love

    Karen. X

  • Welcome Jessie this is an amazing group . To be honest I was scared shitless befor joining the group. And I am so much more confident and learning so much thanks to this group. They are all amazing they all help so much. I am por jak2 +. I am in Australia but just a message away. Take care of yourself hydration is everything.xxx

  • That's pvr. Typing not good

  • Thank you for responding. I was scared to join too because I don't normally do things like this. I figured to try it out because I don't like how rare this is, and there is very little information.

  • Hi Jessie, as you will have read by the other comments, this is a wonderful, caring community who I would be very lost without. Like you, I found very little information on MPN's and what I did read was often very scary. Then I found this community and fell in love with each and every one of the members. No matter what I asked or what I posted I always found friendship and support from everyone here. There is no better site to ask about your condition or treatment as we have each gone through the same. I would say that you need to ask for a referral to a haematologist to get the complete run down on what is happening to you. Wish you well with your condition. Take care, Jill xx

  • I definitely want to get a second opinion. My Hemotologist doesn't seem to know much about this. Thank you for your response!

    Jessie

  • Hi Jessie!

    I'm newish here too so don't have much advice but wanted to welcome you. I was diagnosed with my MPN at the end of Jan and this group has been an amazing support.

    So far I've been drinking more, eating more healthily and exercising more and I've found my fatigue to be better. I still get the odd day when I feel exhausted by 2pm but its definitely loads better.

    I ask the odd question on here if I'm feeling a bit confused and everyone is always very kind with their replies (no such thing as as silly question thankfully).

    So anyway, sorry you have to be here but you're in good company 😉 xx

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