ET and jak2

[Yasmin86]

Hi. After numerous blood tests I have been diagnosed with ET. My husband joined the forum recently and we were given lots of support. I've been diagnosed at 29. Just wanted to know about people experiences on this condition and the impact on their daily life.

[Superwoman]

Hello Yasmin, welcome, welcome to MPN Voice, You are not alone although we are few we are very rare bunch of people, and this website is a godsend to us all.

I have ET JAK 2 pos was told just over three years ago, personally I think that I was living with it for many years as I had so many health problems, once I found out what was wrong with me in a way although devasting I was pleased that I knew it was not all in my mind. Now these days I get on with my life and enjoy every day, keep fit, eat well, and drink plenty of water to keep hydrated, I take enteric coated Asprin, Hydroxcarbamide, attend Hametology every four months for blood tests which at the moment are all good, (long may it continue) I have a chemo nurse who is there for me if needed, i.e. If I have a temperature, infection or generally not feeling well, so far only every needed to speak with her on two occasions, but nice to know she is there.

I know how hard it is to accept the diagnoses, I thought at first my life was over, but this website has more than taught me that it is NOT, you are young and have a good life in front of you as have many on here that were diagnosed at a young age, and no doubt you will have many questions to ask of us all, Maz is a great source of information as she has contact with Professor Clair Harrison so if there is something you are worried about I am sure she will try and find an answer for you.

Not sure what more I can say, but my attitude is onwards and upwards, life is for living and I enjoy every minute of it.

So Welcome we are all here for each other. 😃

[mhos61]

Hi Yasmin and welcome, I'm so pleased that you have joined the forum, you'll find all the support you need here. I'm also ET jak2+ diagnosed earlier this year. I'm lucky enough in that so far I only suffer from fatigue. All the same I have been prescribed Hydrea because I'm considered high risk due to my age (61). I still work part time and nothing has changed for me.

I think it's important to arm yourself with as much knowledge on ET as possible from reputable sources, so that you can make informed choices in your care. It will take time for it all to sink in. I have had to read things many times over and am still learning.

As a newly diagnosed patient you will have many questions. You can ask anything on this forum and someone will be forthcoming with answers or advice. You are very young, and it may be particularly helpful for you to hear from the younger people in the MPN community.

Good Luck

Mary x

[Yasmin86]

Thank you for your positive comments.. it's good to know there is a lot of support out there. At the moment I just feel tired. I have also been prescribed aspirin. I had a biopsy yesterday which was painful!!

It is a lot to take in at the moment

[lizzziep]

Hi Yasmin, I was diagnosed nearly 6 years ago. I was in my late 50's. I was prescribed hydroxycarbamide when I got to 60 as my counts jumped then, I was on that for over 3 years then developed side effects to it and am now on Anagrelide. I can't say the ET has had much impact on my life - except at first when I was EXTREMELY worried and believed everything I read about it on the internet. After finding this site I calmed down somewhat! I get much more trouble from my arthritis than the ET. It is very daunting at first then you realise you could have something a lot worse!!

Best wishes

Lizzie

[Mazcd Partner MPNVoice]

Hello Yasmin, welcome to our forum, as you can see it's a very friendly and supportive forum and I can see that you have had some super replies already, I am sure you will get more. If you would like any printed information please let me know, just email me at [e-mail] with your address. Best wishes, Maz

[Yasmin86]

Thanks maz. My husband joined the forum a few weeks ago and we did receive some useful information (thanks for that.

Just wanted to share some other symptoms I have.. I get a lot of headaches and sharp shooting pains in my legs. My mentsrual cycle has also stopped. Do you know if this related.

[zvinkovic]

Hi Yasmin,

I was diagnosed 17 years ago at age 19. It was following a blood clot in left leg vein so I was put immediately on Hydrea to quickly lower my counts. As I had a great GP who had some knowledge of thrombocythaemia, she suggested Interferon would be better option considering my age and the possibility I wanted to get pregnant later in life. So I switched hospital and started Interferon therapy 15 or 16 years ago and I have been on it since.

I graduated from the university, worked for some time, don't work at the moment but not because of ET but because of lack of jobs here in Croatia, so far have not been pregnant, also not because of ET but the said lack of jobs. I try to have as normal as possible life, but I can also say there are days when I just don't feel well enough, then I try to rest more and do only what needs to be done.

In all these 17 years living with ET I think my period skipped only once, maybe you stopping menstrual cycle is connected to stress of finding out you have ET. However, if it doesn't get back to normal you should get it checked. Also, headaches are one of the symptoms of ET, so you should talk to your doctor about it.

I don't know if any of this was of any help, if you have more questions don't hesitate to ask and I will do my best to help.

Best wishes,

Zlata

[29ewhite]

Hi Jasmin,

I was diagnosed with ET at 32 and MF this year but believe I ve had ET since my teens as I ve never had a normal blood test result. When my platelets are very high or my iron levels low my periods stop for awhile. I didn't have 1 for a year in the past. So I think it could be related. Pain and fatigue are my biggest issues. My headaches stopped once my platelets went down. I worked fulltime until this year and im taking a break at the moment. I work shift work and started finding it very difficult i have fallen asleep at work couldn't keep my eyes open. I'm hoping to go back part time. My advice would be rest when you can, try to get into a good sleeping pattern and keep positive. They keep a good eye on you now that you ve been diagnosed.

Best wishes

E