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I Have Myelofibrosis

A Myelofibrosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Myelofibrosis. You're not alone. 19 People

    Myelofibrosis Experiences

      Hi everyone, I just joined this support group. I was diagnsed with myelofibrosis 28 years ago and at that time the hematology docs decided to just watch my blood counts to see if there were any major changes. There were not, so they told me I had nothing to worry about...
    dcllmasters dcllmasters 66-70 7 Responses Oct 9, 2010

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    Katejephson

    I was diagnosed just over a year ago. For the first 10 months, apart from a large spleen, everything was okay. Last October I was admitted to hospital with varices in the oesophagus, one of which was bleeding significantly. That was tied off and I now have regular checks. It has...
    katejephson katejephson 61-65 1 Response Jan 19, 2012

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    Diagnosed 2/27/2012 - One Month Ago!

    I just found out one month ago that I have Myelofibrosis. I am a 41yr old female living in NH. Thankfully I don't live far (just over 1hr) from Mass General Hospital in Boston where my Specialist is. I am getting prepared to get a second opinion... perhaps at the Mayo Clinic...
    albauman albauman 41-45, F 4 Responses Mar 27, 2012

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    Myelofibrosis Patients

    Hi All,My name is Skye Rodriguez and I work for a company called Elliott Benson research and we are hosting a paid focus group paying $150 to all Myelofibrosis patients that maybe interested in sharing their personal experience with us. This will only be an hour of your time and...
    Skye18 Skye18 22-25 1 Response Apr 13, 2012

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    Related Experiences

    I used to be so afraid of people thinking I was selfish or not being accepted so I would never tell people things about my life. I have trouble making friends because I don't have...
    Stormdance Stormdance 18-21, F 1 hr ago

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    I have issues in that I don't know which me is me. I have my patch (I take my meds in a patch form) on for 95% of my waking life, so at a glance, I'm a mostly calm, school-focused...
    stormthenb stormthenb 13-15 4 hrs ago

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    Went to the Vascular Surgeon last week after suffering DAILY for two years now. However, I have suffered since my teens. It was not as bad until an autoimmune disease revved it up...
    euphoricvoyage euphoricvoyage 26-30, F 3 hrs ago

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    Yes, I've forgiven those who have hurt me in the past because at one point I wanted forgiveness too even if I didn't deserve it. It is absolutely freeing to forgive. Thank You...
    JesusReigns777 JesusReigns777 26-30, F 2 Responses 4 hrs ago

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    I'm gonna get my 19th tattoo today. I know what I want my 20th to represent, but I have no idea what its gonna be. I want it to somehow represent how I'm boldly authentic, yet...
    OqSydSchizo16 OqSydSchizo16 36-40, M 1 Response 4 hrs ago

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    I used to be very fit and recently have been growing a pudgy little belly. But some weight has been going to my thighs and butt making them jiggly and they have a little bit of...
    chubbybellyguy69 chubbybellyguy69 18-21, M 3 hrs ago

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    so finally all doubts have been cleared and it is proved again,,, that some people have their ego, stubbornness is much larger than anything else,,, hahaha,,, and mistake , if it...
    mdbest4u mdbest4u 26-30, M 1 hr ago

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    so finally all doubts have been cleared and it is proved again,,, that some people have their ego, stubbornness is much larger than anything else,,, hahaha,,, and mistake , if it...
    mdbest4u mdbest4u 26-30, M 1 hr ago

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    I have a wide range of personal space. Physical proximity matters and comfort would depend on merit or my ties with the person next to me. I'd have to fix the boundary, it's...
    AB2WUS AB2WUS 22-25 40 mins ago

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    did you lose something? or someone you love? you still have that story, tell it every morning.
    iamickeee iamickeee 22-25, M 4 hrs ago

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    My mom and sister were discussing what colour bathtub my sister should get for the baby she's going to have. They decided on blue because it was more gender neutral or some such...
    ambivalentFriability ambivalentFriability 18-21 3 hrs ago

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    Yep! you have been blocked. just like the rest of slow *******.
    BrutallyHonest13 BrutallyHonest13 22-25, F 3 hrs ago

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    Depression is this complicated chemical imbalance in the brain. Neurotransmitters go lazy, neurons don't comunnicate, hippocampus produces less neurons and starts to shrink...
    Lucije Lucije 26-30, F 2 hrs ago

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    It was towards the end of last summer when the most amazing thing happened to me. Of course I know the exact day. It was Aug 3. I had been on my own for some time- Feb of 2012 to...
    Sugasug Sugasug 41-45, M 2 hrs ago

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    Would EP like to know the truth, as the user sees it? For all of us who were here before EP's 2.5 dark years of destructive design, feature and interface changes, the site is a sad...
    FindmeHoldmeLoveme FindmeHoldmeLoveme 18-21 1 Response 1 hr ago

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    Hey guys and gals... around a year ago I posted something I shouldn't have and it's kinda getting to me now but I don't want to tell anyone even though my whole school know's about...
    maddawgaether maddawgaether 16-17, M 1 hr ago

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    My maternal branch of the family; they are pure dysfunction. Disowning children who leave them for escaping their bullshit. Throwing away mortgage money for a measly party. Willing...
    LoveSoLife LoveSoLife 18-21, F Apr 27

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    I often get thrown with sometimes - we are not sure if you were hallucinating or under substance abuse from individuals on this site when I mention what my spiritual experiences...
    Stephenrko Stephenrko 31-35, M Apr 27

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    People who have BROWN eyes are: Attractive Confident Independent People person Polite Determined Sometimes hard to express yourself Outgoing Humble
    silverfox54 silverfox54 61-65, F 3 Responses Apr 27

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    Ok so recently i owned up to this girl who i had taken i liking to by telling her that i like her, and to my surprise she said that she liked me too. Thankfully the place we were...
    pizzaandmusicarebae pizzaandmusicarebae 22-25, F Apr 27

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    When I was young used to feel.....in fact, was close to normal up until about 7 years old.... That is when my ASPD first began to show up..... But, over the past few years, I...
    AudioTravylerRavenwolf AudioTravylerRavenwolf 13-15, F 3 Responses Apr 27

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    I've been having a series of reoccurring dreams recently. Which is rather odd for me as I rarely ever remember the dreams I have in the first place. Yet as the dream progresses...
    snowberry75 snowberry75 36-40, F 7 Responses Apr 27

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    All in one click of a button.... Wow and it's strange and real I almost don't know how to process it honestly... I can't really put it in to words , *sigh*.... Now I'm up at 5am...
    Prettibrowngirl Prettibrowngirl 70+, F Apr 27

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    My girlfriend cheated on me with a girl so I was just like, how can I compete with that ya'll have fun I guess.
    KelsonTheDragon KelsonTheDragon 18-21, M 2 Responses Apr 27

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    I have been hurt many times in my life but i can understand why. Im normally anxious and it doesnt make people attracted to a coward who fears people. I still figure out why im so...
    tokyo60s tokyo60s 31-35, F 1 Response Apr 27

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    I spent 2 years in college learning something i always wanted to since childhood. Depression came grades fell and i quit it. After an year i want to pursue the same thing but i...
    deleted deleted 26-30 Apr 27

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    I have my heart broken so many times. But it made me stronger now. I tried to find someone, it didnt work and now i can forget about it. I had so many bad expirences that i dont...
    tokyo60s tokyo60s 31-35, F 1 Response Apr 27

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    Aftermath of being cheated on. Don't do it. PRAY:Family Court Parent Agreement Today STBX refuses to just sit and work out plan for kids. We are using a Mediatir (Canadien ) she...
    MrHeartaFire MrHeartaFire 41-45, M 5 Responses Apr 27

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    Thought for the day: People say you cant live without love, but I think oxygen is more important... Have a happy Monday!!!!
    AwesomeAlert AwesomeAlert 46-50, M 1 Response Apr 27

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    I have problem with my step son... He is 17 yrs old and he will be 18 yrs old next month... He moved out because of me actually if he don't give me hard time, there's no problem...
    zenwahs8 zenwahs8 31-35, F 2 Responses Apr 27

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    I know it sounds weird but i want to develope schizophrenia. I have scizophreniform but that's not enough i want to know why I think like this
    Ifeeluberish Ifeeluberish 18-21, M Apr 27

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    That mini heart attack when you have sent a text to the wrong person.
    RedHwaiting RedHwaiting 18-21, F 4 Responses Apr 27

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    I also have yahoo. Mine is lisat663. I wish to find real chatfriends. You too?
    deleted deleted 26-30 Apr 27

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    I also have yahoo. I am lisat663. I would like to find real chatfriends.
    deleted deleted 26-30 Apr 27

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    I also have yahoo. I am lisat663. I would like to find real chatfriends.
    deleted deleted 26-30 1 Response Apr 27

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    I have a crush on Kian Lawley, he has a great sense of humour. His videos are great fun to watch, he definitely knows how to make people laugh he's so hot
    Ilovesomeonespecial Ilovesomeonespecial 13-15, F Apr 27

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    I accidentally forgot my meds two days in a row... Im not feeling too good. I remember being told coming off of them could sometimes be worse than the original depression. But...
    RebeccaJane00 RebeccaJane00 18-21, F Apr 27

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    I have crushes on all white youtubers...
    lorrena19 lorrena19 18-21, F 2 Responses Apr 27