Hi, I’m a 33 yr old with ET, Jak 2 positive, no symptoms. I got diagnosed during a routine checkup few months back. Before the diagnosis, I was hoping to get married and start a family at some point but now really struggling with the decision. I’m not in a serious relationship right now but dating someone which has the potential to get there, but not even sure how to articulate my diagnosis and it’s implications to her.
Wondering if anyone else has been through this and how they thought about it. Appreciate it. Thanks!
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Max_k
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Being newly diagnosed is scary and strange but there is no reason at all not to marry and start a family. If you are put on medication you would need to discuss it with your haematologist but you are young and can just get on with enjoying your life.
hi Max_k, and welcome to our forum, we completely understand how you are feeling. I would advise you to read as much as you can on our website about ET. There is some really good advice on how to tell people about MPNs, mpnvoice.org.uk/living-with...
in fact there is a lot of very useful information under the section Living with MPNs, so have a look, hopefully it will help you.
If you are anticipating a potentially lasting relationship, I'd suggest that holding on to secrets about your ET diagnosis is not a good way to start. Mug up on things as Maz wisely suggests - once you're comfortable with the diagnosis and implications you'll find it easy enough to open up.
You are young and chances are that you will have a long life regardless of new therapeutics. However there is massive progress being made on this front and this will filter through over the next 5 to 10 years. The boffins are making major breakthroughs in term of understanding what precisely they need to target and are now beginning to trial the possible ‘cures’. I suspect there will be more combo treatments going forward and I’m very confident that you will end up living a normal life.
If the meantime, stay fit and eat a healthy diet. And don’t worry, important to avoid stress although easier said than done.
You should tell your girlfriend but this is not a death sentence, the only issue is whether you are experiencing symptom burden.
Good morning, yes I would also very much support you doing both. ET can be managed very well. Although you are very aware of the risks of the condition, the hospital teams are brilliant and will help you in every way .Enjoy your life to the full as ET does not progress further with everyone and you would miss out so much.
I have had ET for over 30 years and have two daughters and one fantastic grandson. My advice is don't let it interfere with your life and tell your prospective partner about it. May be wise to stop medication especially HU when trying to start a family.
Hi Max, I'm sorry to hear you are feeling like this. I was diagnosed in March and I understand it can be a scary time. I'm 27 , was 26 when I was diagnosed with polycythemia JAK 2 positive. I've been with my boyfriend for nearly 10 years and certainly still plan to get married and have kids. This is obviously a personal choice for the individual. But the condition should not limit you. I hope you feel more positive as you process the diagnosis, definitely look to this forum for support and information. Best wishes
Having ET is DEFINITELY NOT a death sentence, In fact most we can live a very normal life, make sure you find a MPN specialist, with proper treatments, diet, eat healthy etc, life is just as normal. Don't be afraid of getting married and start a family. I have been also in another group through Facebook, most members are married with families and living a normal life.
Thanks all! Really appreciate all the guidance. It fills me with joy and gratitude to see such a supportive and responsive community. So glad I stumbled across this forum.
i sometimes even forget that I have ET. In the beginning when I was diagnosed I felt so scared and depressed. Now, almost 2 years later, I have accepted it, and some days I just forget I have it, and live my life and enjoy. You have your whole life ahead of you, and will amke soneone a very good life partner and father one day.
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