recently diagnosed at 19

[monique427]

i have just been diagnosed with et at the age of 19. i was just wondering if there is anyone who has/has had this condition from around my age and could share their experience. Most of the information i have found has been directed at 50+ age group.

[Hidden]

Sorry to hear you have been diagnosed with ET at such a young age. I have heard of others on this site who are very young. Having said that, most of us older ones don't know how long we have had it before diagnosis. While it isn't something anyone wants to come along and spoil your life at any age it must be harder to accept for young people.

No doubt your haematologist will get you on to the best regime to deal with your symptoms and to restore your life to normality. I hope you make contact with other young people on this site who can empathize with you. You don't need to feel alone though as all age groups here on our great website are here for you.

Maz, our hardworking administrator and fellow-sufferer can, if you would like, get you matched up with a buddy around your age. Look for her post. I would think it would be not long in coming. Try not to stress too much, there is a tremendous amount of support on this site which you will soon see. X

[Kerri2]

I am sorry to hear of your diagnosis. I was diagnosed 8 mos ago but I am old. It's alot to wrap your head around at first and I hope you are able to connect with some young people. Keep posting we're here for you and can benefit from your perspective.

[Rochyne]

Hi!

I'm 24, and was diagnosed with et when I was 20. I only found this community recently and would have to say having a place to ask questions is invaluable. And I would definitely recommend the buddy scheme that mpnvoice runs.

Treatment wise my doctors were keen to hold off until it was needed, mostly because of my age.

The one thing I find most tricky is the tiredness /fatigue that comes and goes. And whilst I don't listen to my own advice I would have to say not being hard on yourself is pretty important. That being said it's easier said than done!

Mostly though life and things hasn't changed much since I have been diagnosed, so I'd have to say don't let it be something that defines you

One interesting thing I have found out recently through the nursing team/macmillan charity : et has been categorised under the cancer bracket so that sufferers can receive more help, my nurse helped me get an nhs discount card so I don't pay for prescriptions. I get pretty bad reynauds through the winter and the doctors are keen to try lots of new things each time tying to help, ends up costing a fortune in prescription charges !

Hope this helps

[angie1]

I was 24 when diagnosed, and that was only by chance because of recurrent miscarriages, and in fact I think I had it from about the age of 18. I'm now 56 and can honestly say that I haven't noticed any symptoms yet that couldn't be explained by other things, so I am one of the lucky ones. I've just been on a daily 75mg aspirin but have been told that when I reach 60 I will need to start taking something stronger. So it doesn't have to affect your life, and my best advice is try to forget about it if you can and enjoy life to the full.

[zvinkovic]

Hi monique,

I was diagnosed at 19 too. I am 36 now, so 17 years ago. I was diagnosed following a blood clot in my left leg so I have been on medications from the beginning, first on HU, and then on Interferon when HU stopped working, and aspirin every day.

I didn't have more blood clots or other complications and try to live life as normal as possible. I graduated from university, got a job, then another one, have a longterm boyfriend, so everything is almost normal.

If you have some specific questions feel free to ask, I will try to help as best as I can.

[sogtyme]

didn't think about the age factor as mine was due to the JAK2 gene in my bone marrow. I was told that the mutation was always there but it took a tramatic injory to bring it to the fore front, which in my case was a water ski racing accident. I fell at over 80mph head first poping my neck though I broke it but luckily was just a severe snap! but a month later 3 strokes and tests revealed the gene, which is rare 1 in 500,000 lucky us. Sorry I can't answer your age ? I was 51 when it happened now 59 on hu no side effects and feeling blessed I have a great hemotoligist to keep an eye on me. Good luck with your quest and stay positive

[neek0ab]

Hey Hun my name is Sophie and I've had ET since I was 15, and I'm 18 now. It took doctors 2 years to diagnose me but now that I've been diagnosed I've been on hydroxy for about a year now, there's good and bad days but mostly it's just fatigue that takes you over. Do you have any specific questions? I can try to help you to the best of my ability.

[Mazcd Partner MPNVoice]

Hello Monique, welcome to our forum, as you can see you will get a lot of support from the lovely people on here and I can see that you have had some replies from people who were very young when they were first diagnosed. As you say, most of the information available is aimed at people 50+, that's because before all the recent amazing research going on around the world it was thought that the majority of people wouldn't develop a MPN until they were much older, and we now know that very young children are being diagnosed. We do have some information on our website aimed at younger people which might help you mpnvoice.org.uk/living-with..., and I can also send you some of our information booklets on ET and any medication that you are taking, just email me at [e-mail] with your postal address. I can also send you details about having a buddy to talk to, I am sure this will help you as a buddy has the same MPN and takes the same medication and can support you from the perspective of someone who really does understand how you are feeling, and we do have buddies registered with us who were diagnosed at a very young age and are still young themselves, so let me know. Please ask any questions that you have, we will all do our very best to answer them for you. Best wishes, Maz

[shankei]

Hi Monique,

I was diagnosed with ET at 19 and in a few months I will be 41. It took me several years to actually except that I had this condition and so I got on with my life, the same as my peers. I partied hard, went to college, had children and ran my own business. I did have a blood clot on my lung, but that was probably due to not taking my meds as I should, as I was in denial. Therefore my recommendation to you is, live your life, enjoy yourself the best you can, but just take care of yourself while doing so.

Its only now as I have got older, that i find ET gets in the way.

I hope this helps

Shankei