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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

    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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    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

    This story is about the church I used to attend when I was a child. The incident supposedly occurred before my family joined the church in the 70's. So I'm not sure of the year...
    paclark paclark 31-35 8 hrs ago

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    I'd describe myself as a straight, in the closet , cross dresser. For years I used fancy dress parties as an excuse to dress up, and , to be honest , i've always had a thing about...
    donnaka donnaka 36-40 1 Response 4 hrs ago

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    So my wife and I don't see eye-to-eye in the sex department and I haven't always been the nicest to her when she rejects my desires. She never initiated, so it has been left up to...
    sasst92 sasst92 36-40, M 3 hrs ago

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    I don't know if I have Asperger's or not but all I can say is I feel so painfully awkward...and aware.. I've always felt off...I was bullied...I was overlooked by teachers... I...
    nch2i nch2i 26-30, F 1 Response 13 mins ago

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    It's just been recently that I can even be around pregnant women without being awkward. The idea of growing a human was too much for me. However, everyone seems to be ready for me...
    meganbreck meganbreck 26-30, F 1 Response 5 hrs ago

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    The situation or series of situations we find ourselves in will bring us to a crossroads. They will shape us into who we will become, what we will believe in, and will either...
    Nunashamed Nunashamed 36-40, F 55 mins ago

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    London. I have a British London accent, and some words sound quite posh at times. Since I live in London and most of my friends have the accent, some friends from Israel, USA and...
    iiCHARLIii iiCHARLIii 13-15, F 2 Responses 9 hrs ago

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    Yes I do have a crush... on a friend who's older then me... around 15 years. I think she's beautiful, and I love her personality, so bubbly and happy... tho I know I can't have...
    theghostofsabotage theghostofsabotage 22-25, M 9 hrs ago

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    Yup. I think if you can't support them you shouldn't have kids. And if you do drugs then no you shouldn't have kids. If you can't be a responsible parent then no. I know people who...
    AzureTiger AzureTiger 18-21, F 2 Responses 8 hrs ago

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    It's kinda funny really. I'm an American living in Australia. So I have an accent here but bc I've been here so long when I talk to my family or go back home they also think I have...
    aquagrl aquagrl 31-35, F 2 Responses 8 hrs ago

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    Reds - a strong aura within the physical color group - approach life with gusto and courage, and have tremendous physical, emotional and spiritual energy. Reds are at their best...
    mohoganyred mohoganyred 41-45, M 2 Responses 6 hrs ago

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    Being raised in Norway and moving to Canada, people noticed and pointed out my accent. Now, after living here for 4 years some still do, and some say I have no accent at all...
    lilysworld lilysworld 18-21, F 6 hrs ago

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    It breaks my heart to see some scum who have kids and couldn't care less about them when there are some amazing people who physically can't have kids but would be amazing parents.
    thefurthestthing thefurthestthing 18-21, F 2 Responses 5 hrs ago

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    My dad didn't go to work and when I went over there today after school he didn't say anything he sat in the living room with nothing on it just looked down at the ground for like...
    sommer02 sommer02 16-17, F 3 hrs ago

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    If you have been dating a girl for a while and she usually almost always have her phone in her hands. However, lately she has not been texting you as frequently as before. She used...
    Skyi99 Skyi99 22-25, F 2 Responses 3 hrs ago

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    for a while now since my dad died 2008 and i was alone in my struggles. I haven't been going to church since then either. But i wanna get it back somehow or I feel I'm not gonna...
    Tristan421 Tristan421 31-35, M 1 Response 2 hrs ago

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    About a year back i did get into a serious relationship! He indeed was a lovely guy. Before i got into a relationship i weighed 53kgs which was fine for my height. I was also very...
    lovingbunbun1234 lovingbunbun1234 18-21, F 2 Responses 1 hr ago

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    120 tokenssssss yeheeeeeyyy! have so much coin to buy a gift for christmas :P if your my friend... what gift do you want? select from the gifts :)
    ElizabethSwannTurner ElizabethSwannTurner 18-21, F 2 Responses 9 hrs ago

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    I have a role model named Tupac Shakur. Tbh his lyrics taught me more about life than my parents did (they simply put me in situations where I had to reach myself). Through all...
    gow90 gow90 18-21, M 9 hrs ago

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    I have some dark dirty secrets wish I had someone I could share with
    Dad4young Dad4young 41-45, M 1 Response 9 hrs ago

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    I have 2 tarantulas ..........
    Shesleepsatnight Shesleepsatnight 16-17, F 8 hrs ago

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    The colours of fall are really very suggestive. Maple trees and bushes with colorful shades of red make the sceneries in this season like a huge painted canvas. We have to enjoy it...
    Gallot Gallot 36-40, M 2 Responses 8 hrs ago

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    I have gone bridge jumping. 30 feet or so, it was pretty fun. I'm not afraid of heights but my friend is and it was fun getting her to do too lol. Water felt great :)
    AzureTiger AzureTiger 18-21, F 7 hrs ago

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    Nina Poizen :) I don't have anything super cool uploaded xD Just a silly vid my sister and I made and one of my puppy, but if you wanna check it out, go ahead, I love making...
    NinaBunny NinaBunny 70+, F 7 hrs ago

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    I've had a lot of pets. Birds never suited me it seems. I had love birds for a while but gave them to an older lady who loved them. I've had some pets literally forced away out of...
    AzureTiger AzureTiger 18-21, F 1 Response 7 hrs ago

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    I am an Australian, both of my parents are english so I have a mix in between an Australia and a British accent.
    chlo3ann3 chlo3ann3 13-15, F 1 Response 7 hrs ago

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    If you have something to say that is mean, cruel or simply bad for others to hear. Keep quite, you'll live a happier life that way, unless you'd become a comedian. You could earn...
    Concerto Concerto 22-25, F 6 hrs ago

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    Him: "say, you look really familiar, have we met before? her: yeah, i work at the VD clinic"...
    AntonioV AntonioV 46-50, M 1 Response 6 hrs ago

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    Him: "Havent i seen you somewhere before?" Her; yeah, thats why i dont go there anymore"...
    AntonioV AntonioV 46-50, M 1 Response 6 hrs ago

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    Just saw two lesbians making out in a car outside the bar... would have been pretty hot if they both didn't look like Andy Milonakis. Yuck, no bueno! On a lighter note who's still...
    AreYouDaft25 AreYouDaft25 31-35, M 5 Responses 6 hrs ago

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    I had my first real gay experience with a good friend of mine when I was 17 and im now 24 and havent done anything since cause im not out at all.
    realredmist92 realredmist92 22-25, M 1 Response 6 hrs ago

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    Him: "wanna go to my place?" Her: "why? Do you have a good looking roommate?"
    AntonioV AntonioV 46-50, M 1 Response 5 hrs ago

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    Doesn't everyone have an accent?
    thefurthestthing thefurthestthing 18-21, F 2 Responses 5 hrs ago

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    I'd love to have the babysitter it's just so horny & so naughty alway been a massive fantasy
    tom1851 tom1851 46-50, M 4 hrs ago

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    Up late can't sleep... Hurts to stand up move my arms lay down. I hate this disease. Tired of trying to be strong... Feeling alone... Tired of explaining what people who don't...
    MsAnonymous1 MsAnonymous1 18-21, F 2 Responses 4 hrs ago

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    I'm soo hapy my mom letting me say home๐Ÿ‘๐Ÿ™Œ๐Ÿ˜ but then again Ima have to make up all this missing work๐Ÿ˜ฉ๐Ÿ˜  so its a bitter sweet moment for me lol.
    footballQUEEN footballQUEEN 16-17, F 1 Response 4 hrs ago

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    I have many accents that come out just Involuntarily. I call it multiple nationality disorder (TM) afflicted with stunningly bad skills at Russian, French, English, Geordie...
    AsteriasAura AsteriasAura 36-40, F 4 hrs ago

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    People say I have a southern accent which I hate
    KWsuperstar KWsuperstar 16-17, M 3 hrs ago

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    With all these new 'atlers' I feel like I can't be sure whether one or more people are in control. We havent been made aware of any new names, only different personalities. At the...
    JaaePlus JaaePlus 18-21 3 hrs ago

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    I'm southern and apparently I have a really southern voice
    catherineeac catherineeac 13-15, F 1 Response 3 hrs ago

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    Ok... This is weird, because, I am an Afrikaans speaking person... Yet I have a British type of accent... No one in my school sounded like that and no one in my family sounds like...
    Qwert143 Qwert143 22-25 2 Responses 3 hrs ago

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    Blaaaah. I've finally discovered the source of my anxiety and there's absolutely no way it can be defeated. I'm now stuck almost 6 hours away from home thinking I would be home...
    TheSongPlaysWithin TheSongPlaysWithin 16-17, F 2 Responses 2 hrs ago

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    "Share a coke with..." I have a lot to share but you **** it all up :3
    TheKDoomsday TheKDoomsday 13-15, F 1 Response 2 hrs ago

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