ET young adult

Hi everybody,

I'm Davide, 31 years old, from Italy.

I'm a writer, diagnosed with ET in 2014, jak negative and no therapy at the moment.

It's very hard to realize what it happened - and why it happened to me - , but as long as I read more information about MPD, about early and late stage of clinical trials, future seems brighter.

There are scarce informations and papers about long term disease outcome in young adult less than 40 years old at diagnosis of Essential Thrombocythemia, but I know that we have fewer mutations and fewer risks that people older than 60 years old.

I'm waiting for

I want to be a father and I want to marry my beautiful girlfriend.

I have a lot of plans, even if in Italy we are not used to miracles I believe that one day - maybe tomorrow: who knew? - someone here or on the other side of the world will say: "EUREKA! I GOT IT!"

Every day I wake up hoping for the best, I say thanks to God because this disease helps me to be more patient, confident, sensitive...I appreciate life, in every moment.

Thank you for the support...and sorry for my english!

Greetings and hopes from Italy

Davide

20 Replies

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  • Hi Davide

    Welcome to the forum. I agree it is a shock, my diagnosis was at the age of 42 so not as young as you but still young. (I have PV)

    My sister also has ET and has since about 37. She only takes clopidogril to thin her blood, has not had to take any other treatments.

    Im sure as you say one day someone will say Eureka, to be honest i think that happens a lot, there are so many new treatments in development, even if they are not a cure they can help alleviate any symptoms we have.

    Good luck

    Paul

  • Hello Davide, welcome to our forum, we all understand how you are feeling, we have all wondered why it happened to us, but you are in the right place for help and support. If you would like any information booklets you can read and download them from our website mpdvoice.org.uk/treatments/... or if you prefer I can send you some in the post, you can email your address to me at maz.cd@mpnvoice.org.uk. There is lots of research being undertaken around the world by some amazing people so hopefully one day we will hear them shout Eureka we've got the cure. Any help and advice you need, just ask. Best wishes, Maz

  • Hi Davide, I was diagnosed 8 years ago with PV at the age of 38 so I know how you are feeling. I managed to stay off the oral chemotherapy until 2 & a half years ago. Up until then I was managed with just venesection & aspirin. You will get lots of support & advice on here. By the way your English is very good!

  • Hi Davide,

    I was diagnosed with ET in 1999 at age 19. It was a shock because I was so young and no one in my family has or had any blood disorder. But after reading a lot about ET I got more confident and today I don't even think about it, I got used to it and accepted it is part of me for now. I also hope for eureka moment in the future and I believe we will live to see it. There is much breakthrough in medicine every day and I believe our day will come.

    How high are your platelets at the moment and how did you get diagnosed? Do you take aspirin or any other blood thinner?

    Greetings from Croatia.

    Zlata, 35 yo, ET diag 09/1999, JAK2 neg, daily Aspirin, Roferon-A 3 x 6 MIU weekly

  • It was just a check up, I was asyntomatic but my plt were about 700.000; I take just baby aspirin but I can't stop thinking about it :( I read every day papers, abstract, clinical trails...I know there are dramatic progresses in MPN, I hope for the best..all I want, right here and right now, is to become a "man": I want to marry my girlfriend, I want to be a father. Sometimes I feel alone, scared and confused

  • I am so sorry to hear this upsets you so much. I think of my disorder as of diabetes, it is a chronic disease and if you keep it under control you can live life as full as anybody else not having a disease.

    You can be a father, even women with ET have succesful pregnancies, and there is no need to think you can't have everything that a healthy person has.

    I know it is scary and you feel alone because you can't explain to people what you are going through. My boyfriend is supportive but he is not in my shoes, sometimes he doesn't understand me, sometimes he panics more than I. But he is there for me and I know he won't think less of me if I feel exhausted today or don't feel well enough to go out with him. I know it is hard for him too because he would like to help but there is nothing he can do.

    How is your girlfriend reacting? Is she scared and insecure too? Us girls tend to worry more so I know it is hard on her too.

    Wishing you all the best and feel free to ask or contact me whenever you feel like it.

  • Hi it's nice to know I'm not the only young one out there with this disorder. And I feel lost some days as I have nobody to talk to. I have ET and I am JAK 2 positive. I got diagnosed in October 2012 and I am now 27. I used to take aspirin but as it was giving me problems I now take clopidogrel.

    How are you coping with it? What do you do on your down days? Is your count high?

    Emma x

  • Hi,

    When I was first diagnosed, average age of people at my haematologists office was 70 years. Even later I found only a few people of younger age, and this is the first place where there is more young people who are active in sharing their experiences.

    I am 35 now and have been diagnosed 16 years ago following a clot in my left leg. Therefore I had to be put on medications immediately and I am on Interferon continuously for the last 11 years, on Aspirin all the time, and I was on Hydrea in the beginning. My platelets are around 700, other counts are normal with slight elevations of liver enzimes, and bit high uric acid. I never had other thrombotic event, and I don't have any other symptoms. I try to lead a normal life as much as possible. There are days when I feel like ran over by a truck, I don't know if it is from platelets or from Interferon, on those days I try to get more rest and if I feel like doing nothing, I do nothing. I go to work ofcourse, but when I come home I rest and try not to overdo. It is harder for us, but I try not to let the illness stop me.

    It is really great to talk to someone in similar position, even if we are 2000 kilometers apart.

  • Hi Davide, I was diagnosed 21yrs ago when I was 17, ET jak2 neg.

    I am now 38, married with 3 beautiful children, 17, 14 and 8, I have only every really been treated with aspirin and watch and wait!

    It is definitely scary but I have always thought this "Illness" is just not going to stop me having a normal life. Just go out and grab it with both hands xx

  • Davide

    I discovered my ET a few months before I was due to marry, 23 years ago (aged 34). I thought my world would implode.

    I spoke to the most senior specialist professor I could, I talked with my fiancée and trusted friends. Our illness is very manageable (by the doctors). We decided to marry.

    My gorgeous wife and I have 3 wonderful children, a very blessed life together and much more to look forward to.

    very best wishes

    David

  • Hi,

    May i know did u on HU for your sickness? My hubby also ET-CARL +ve, no medication now as doctor found that he is not suitable to take aspirin and he is in low risk category. We plan to have second baby and i worried if he need to take medication then we cannot have baby anymore.

  • Hi

    Please. you must get advice from your doctor. If your husband needs aspirin (or something similar) I don't think it matters. I think this will change if other drugs such as HU are used.

    dd

  • Hi my name is Emma I got diagnosed with ET In 2012 and I am 27 now. I am also JAK 2 positive.

    I'm still now trying to get my head around it myself and believe me it can get easier. I have down days just like everyone but like you say we have our age on our side. If anytime you need a chat feel free to drop me a message. I can't seem to find anyone my age with ET like me.

    My email address is emmalouise16@hotmail.com

  • I am 34 years old and I also have ET. I m just taking a baby aspirin too. I was shocked when I first learn about my disorder. My boyfriend (ex) was not really there for me and that was painful... BUT I have realised now that I will live my life, almost like the other "normal" persons. Everything is gonna be allright! Be brave! You have the support from all the members in this group. Their posts and articles have helped me a lot! You are not alone in this :) :) :)

  • Hi Davide, I have ET, JAK 2 negative. I am a lot older than you, and have been on HU for over 2 years. Reading the other replies there are quite a few other young people who seem to be living full lives with ET, I hope you do too!

    Best Wishes

    Lizzie

  • Welcome to the site Davide. It's a good place for support. I was diagnosed at 37 and am now 43 so still relatively recent in comparison to some of the members here. As you can see it's really helpful to be able to share with people going through the same condition as you. I've found reading through the stories here really useful and encouraging. I hope you have too.

  • Not to be flippant but I nearly enjoy being a youngster when I attend haematology. I was diagnosed at 37 with ET and Jak2+ and one of the first things that struck me in the waiting room was the age of other patients. (Apologies to other patients!) I know other other patients were quite shocked when the haematologist called me into her office and not my mother who was accompanying me.

    It's always a shock receiving any sort of diagnosis. In some ways it can nearly be a relief if you have had lots of symptoms and you suddenly have a reason as well as confirmation you aren't a hypochondriac. But it can still leave you reeling as you try to make sense of your situation and turn your thoughts to the future.

    I did a lot of googling and Internet searches as well when I was first diagnosed. It can be helpful to a certain extent but it is also important not to become obsessed. There is a world going on out there. You don't want to miss out. No one knows what the future holds - even healthy people (I still don't seem self as a sick person though!). You just have to make the most of whatever life throws at you.

    Good luck and I hope you find some peace about your diagnosis. It's early days yet but it does get easier.

  • Thank u everybody!

    I think that young patients with ET represent category of patients projected to a prolonged survival and also to an extended utilization of medical resources.

    It's very important not to become obsessed, because I do believe the mind and body are very connected each other, and we must take care of them in the same way.

    This disease is not fully understood, but I have the perception that every day, step by step, it becomes easier to fight it.

    They are looking for the best management of us, and I have faith in their abilities.

    Good luck to all of you,

    Davide

  • Hi Davide! I"m also 28 years old. I was diagnosed 1 year ago before I married. I'm very sad. My plts are very high, 1526k/l. I start to take hydrea 500 mg once daily. Plt go down, I fell pregnacy when I was using hydrea. I don't know about that. I asked many the hematogist in my country but no one can't treat to me in this case. I feel myself useless. I had still birth at 17 week gestations. I'm extremely depressed. Then I read many research about ET. Now, the hematogist in my country haven't yet experience to treat ET, especially ET in pregnancy. And, I haven't a baby yet. I'm very sad because I'm also a pediatrician but haven't a baby of mine. Do anyone have experience to treat ET in pregnancy ? Or may introduce the hematogist to help me? I want to have a baby.

  • Hi,

    Try looking into interferon treatment for ET, I don't know if it is available in your country. You can have regular or pegylated interferon, pegylated is better if you can get it.

    Best wishes,

    Zlata

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