Thank you for giving hope

[Mood2020]

Hi everyone

I’ve been diagnosed with ET 3 days ago. It’s been a shock. I’m 35 and have a little daughter. I have a lot of Neurological symptoms so I’m not sure how they’re going to manage me yet. First day was shock second day a lot of crying, same 3rd day. But a read a few threads where people on this forum have shared their experiences of life expectancy when they were diagnosed how they were treated etc and just wanted to thank you all for giving hope. As many people put on their threads let hope were all getting birthday cards from the queen (or king)when we’re 100☺️

[JojoWonder]

I understand. I wasn’t as young as you were when diagnosed but had a 3 month old baby. It’s quite a thing to get your head around! It gets better when you have a treatment plan (if you need one) and a little time has passed. I’m a year and a half in since diagnosis and my platelets have been under control for a while. Of course I’d rather not have ET but life is good as is the prognosis now that you are diagnosed and being monitored.

Sending love,

Joanne x

[Mood2020 in reply to JojoWonder]

That’s so tough def with a young baby

Wishing you the best of health and happiness thank you so much for sharing 😍

[Mazcd Partner MPNVoice]

Hello Mood2020, and welcome to our forum, glad to hear that reading about other people has helped you. It is very scary when you are first diagnosed, quite a lot of information to take in. I would suggest that you read as much as you can about ET on our website mpnvoice.org.uk, there is a lot of really useful information about the different medications, side effects, ways to feel better, and more patient stories. Take your time to learn more about your ET.

And a good tip is for the next visit to your consultant, write down any questions you have, it is much easier to have them written down so that you don't forget to ask something, it is easy to get sidetracked. And if you can, take someone with you to the consultation, always better to have someone else listening so they can remember something you might forget.

We are all here to support you. Best wishes, Maz

[Mood2020 in reply to Mazcd]

Thank you so much!

[Aime]

Hi Mood2020, totally understand how you’re feeling. My kids were much older when I was diagnosed but my daughter was expecting our first grandchild and I was so worried that I wouldn’t see the baby growing up and I wouldn’t be there to support her.

Now 8 years down the line, expecting grandchild number 3 in March next year and my joints are giving me more hassle than my extra red blood cells! There are so many folk on this website, who have had their diagnosis a lot longer than me and are still alive and kicking.

Maz has offered good advice on how to get the most out of consultations as, particularly in the beginning, it can all seem so overwhelming and scary but as she says we are all here for you. You will feel better about your condition the more you learn about it - not from Dr Google but a reputable site like mpnvoice.org.uk and a forum like this one which is closely monitored to keep information correct and appropriate.

I’m glad you’ve found this site because it was the best thing I ever joined! Kindest regards Aime and thank you to all of you who have helped me also. This forum is amazing.xx😻😻😻😻

[Mood2020 in reply to Aime]

Yes def has given me hope and to my family members and friends who are also in shock

Wishing you the best of health and happIness

[Mood2020 in reply to Aime]

It certainly helped me stop crying! The more I read about it the braver I feel

It’s so rare that I’m unlikely to just come across people that also have it so it’s lovely we can come together on this forum

[Otterfield]

I was diagnosed aged 39 in 2001. I remained in good health for nearly twenty years. Sadly I have now progressed to Myelofibrosis but that doesn't happen to everyone. In any case, the treatment for Myelofibrosis is really good now and, if that happens to you in many years time, it will be even better. It is a terrible shock at first but you have every reason to expect a long healthy life x

[Mood2020 in reply to Otterfield]

I’m sorry to hear you’ve progressed to myelofibrosis, thank you so much for sharing. I guess no one knows what the future holds. I hope for the best of health and happiness for you and I hope your treatments help

[MarPapa]

I have been suffering from ET since 2002. And for me it progressing to MF .This does not mean that it will happen to you too. When I was first diagnosed I did not even have a family and now I have two boys 12 and 7 years old. I was very lucky and I had a good hematologist who helped me ,with all the right treatments, to make all my dreams come true. I was and I am very optimistic and I hope that everything will go well for as long as I have. Do not give up and when you overcome the first shock you will look at life with a different eye. Be strong and I wish you all the best.

[Mood2020 in reply to MarPapa]

Thank you so much

I hope that once I’ve overcome the shock I can also be more optimistic

Sorry to you progressed to myelofibrosis wishing you the best of luck with your treatments be the best of health and happiness