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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

    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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    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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    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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    Related Experiences

    A part of me is determined not to forget even though it only brings me pain! I feel responsible for remembering and carrying the pain with me into every facet of my life.The most...
    lauren71 lauren71 41-45, F 1 Response 2 hrs ago

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    I have a neighbor here that I almost known since I was a kid. They were a couple owned a store of office supplies and other merchandise. They are very kind ever since we met. My...
    scjane scjane 22-25, F 1 hr ago

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    I lost it long ago and now i have rediscovered it within again.Well being traumatized has made me a weakling and dependent person and i ended up being clingy and a bit over polite...
    GenuineAngel GenuineAngel 18-21, F 3 hrs ago

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    Weird things set me off and make me cry. I guess I'm sensitive like that. Avoid these subjects around me and we be cool.. For one, the word, '************'(mofo)...hate that. Hate...
    Levi1 Levi1 13-15, M 1 Response 2 hrs ago

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    I am 26 and have been struggling with pica for 20 years. When I was a kid (6 years old) I started to eat the stuffing out of couches. It started off as a little here and there but...
    keepitlikeasecret keepitlikeasecret 26-30, F 1 hr ago

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    I have them :) sometimes they over take the realty of my existence :) I live on an island . No one travels very far . The streets have been turned into green pathways. I love...
    Homejames Homejames 51-55, M 2 hrs ago

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    I would... although l have many acquaintances and enjoy chatting with them, like others l have a few close friends, whom l can discuss anything with, no holds barred...you know who...
    MistyMoon1 MistyMoon1 41-45, F 1 hr ago

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    One of the people who used to abuse me (a close family member) is dying.. They're not expected to live another six months. I really don't know how I should feel about this. They're...
    AaronH96 AaronH96 18-21, F 3 hrs ago

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    I have a degree in Audio engineering as well as a communications degree majoring in public relations
    mattywheels25 mattywheels25 26-30, M 1 Response 3 hrs ago

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    Well I wanted to share my suicide attempt. I overdosed on 4 bottles of pills they were all my moms medication i Know one was benedril idk if i wrote that right , backlifin and some...
    gnarlyyvibesz gnarlyyvibesz 13-15, F 3 hrs ago

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    The hoodie I have to constantly pull down๐Ÿ‘Œ
    rubberduxk rubberduxk 18-21, F 3 Responses 2 hrs ago

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    you never have to be mean. love or hate its everyones choice. being polite is enough.
    limitles limitles 18-21, M 2 hrs ago

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    I saw several topless women tonight and decided that i have pretty nice t*t* so maybe I'd post them and see if others agreed...
    twilaboz twilaboz 51-55, F 2 hrs ago

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    Sometimes I think of the second he turned to me in the dry mid-summer grass and kissed me for the first time. I have a collection of moments that literally take my breath away. I...
    sckrluv sckrluv 22-25, F 2 hrs ago

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    It's been two and half years since I quit drinking alcohol & beer. Going on three years this coming July. I don;t do any drugs..but it still feels good to be sober and clean. I...
    FourEyedLad FourEyedLad 36-40, M 1 hr ago

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    So for about 2 weeks ago it started A new girl in My class, she seemed very Nice so me and My friends talked to her, and after 20 minutes it feelt like we were really good friends...
    HappyDepression HappyDepression 13-15, F 1 Response 1 hr ago

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    I have 3 classes with him which means..I only get to see him 3 times per week. T_T
    kmaroo kmaroo 18-21, F 52 mins ago

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    The wish to has become stronger now I've been pressured more in my life. I'm now forced weekly to go and see two women and get humiliated early in the morning. It's forced upon me...
    1lonelydaisy 1lonelydaisy 41-45 31 mins ago

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    I'm so sick and tired of people asking me what's wrong with me or why I'm upset or them wanting to know what the goes on with me. I'm not going to tell you, I can't say anything...
    savvy1998 savvy1998 16-17, F Feb 5

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    ๐Ÿ’™ Riser - Dierks Bentley ๐Ÿ’™ Lay your pretty head down on my shoulder You donโ€™t have to worry anymore This old world is cold and getting colder And I know how to lock and...
    BrokenSoul88 BrokenSoul88 26-30, F 1 Response Feb 5

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    I'm addicted to everything. When I was 4 my grandpa taught me how to play chess. I then proceeded to play at every available opportunity. When I turned 7 I got my first couple...
    addictedtoeverything addictedtoeverything 18-21, M 1 Response Feb 5

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    I have ptsd... I was norn in 1974.. in care from day 1. I have been having flash backs from when I was in care for 1st yr of my life.. psycologist said it isnt my mind playing...
    stormricks stormricks 36-40, F 2 Responses Feb 5

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    for some reason there is this, like fog/mist in my head and i cant seem to understand why, everything is hard to remember; i cant seem to understand why, i cant remember things...
    E5RedViper E5RedViper 18-21, M 1 Response Feb 5

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    I do not want to have one and I won't have one, for me its simple I am with the man I chose to be with I love him every moment we have the odd argument or two but not often. He is...
    louisetiger1 louisetiger1 31-35, F 1 Response Feb 5

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    Being depressed over a girl isn't cool. And whats worse, i am afraid of letting my friends, family know because i don't want to be laughed at. Even if i know they won't. For over a...
    Lance142Vance Lance142Vance 16-17, M Feb 5

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    I have had a crush on a boy for months now, since about October. we met at a school event since we're both involved in a lot of the same clubs. we spend a lot of time together and...
    LearningHearts LearningHearts 16-17, F 1 Response Feb 5

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    Do you think people should give away their rights and be forcibly vaccinated? My answer, no. We have rights to our bodies and not for the government to inject **** into us. I won't...
    redwings8895 redwings8895 18-21, M 2 Responses Feb 5

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    in past i thought i have reason but that reason just isnt able to give me more strength since past 2 years my life is a perfect nightmare before it was nightmare but this kinda i...
    deleted deleted 26-30 Feb 5

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    I have no reason and not one person would miss me. I tried, but since I was alone with no help.......fail. Besides, I am not important and I will just be a memory. My life been...
    Unknown1047 Unknown1047 18-21, M 2 Responses Feb 5

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    I once said 'I want to live life to the fullest' ... little did I know, I actually had that chance and it was more than I could ask for. 2014 was a big year for me, I had a...
    SwanLake78 SwanLake78 36-40, F 34 Responses Feb 5

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    Not so much a bucket list, but a plan for a happier second half of my life. I know that I have some catching up to do because I spent a couple decades settling with comfort as...
    deleted deleted 26-30 1 Response Feb 5

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    I think im just gonna put out an EP (no pun intended ) Just to release some of the things i have bottled up
    Princeofnothing Princeofnothing 18-21, M Feb 5

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    Coughing up Mucus? For a few months I've always coughed in the mornings. However until this morning I always assumed it was because of the sleep apnea I've suffered from since...
    UnhealthySSBBW UnhealthySSBBW 22-25, F Feb 5

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    Iโ€™m sitting here having a million thoughts go through my mind and I figure out that a part of me died when I was diagnosed with diabetes. Basically my freedom of living was taken...
    MyCrookedSmile MyCrookedSmile 22-25, F 3 Responses Feb 5

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    Why am I such a glutton for everything that ia bad for me? I mean why does the things that taste and feel so good have to be so bad :/
    greeneyz83 greeneyz83 31-35, F 3 Responses Feb 5

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    Friends issue as just want to spell this out. I want to say that whole of my life never had real friends. I had like some who called themselves a friend but after few months,their...
    Egyptianguy34 Egyptianguy34 36-40, M 3 Responses Feb 5

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    I have bbm and so bored so add me plz my pin 52ffc139 plz add me
    hmkspain hmkspain 16-17, M Feb 5

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    It took a while but I was diagnosed with ADHD-PI, a variant missing the trademark restlessness. The PI means 'predominantly inattentive' and means I struggle to hold focus and find...
    iou1soul iou1soul 22-25, M Feb 5

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