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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. 20 People

    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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    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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    Related Experiences

    I have had many teen boys saying "your cute." And stuff and I don't know if they are just saying that it not I don't know! I'm only 13.
    pie323 pie323 18-21, F 19 mins ago

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    Turns out pregnancy induced insomnia is not a myth. Also doesn't help that I work nights (10 pm-7 am). Needless to say my sleep schedule is way off. Right now, as I type this, I am...
    LoneLostDreamer042 LoneLostDreamer042 26-30, F 23 mins ago

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    all i do is read and write yapi smuy and that's it that's all that i have in a dirty mind. but like, sec that might involve me seems very very awkward but like, other characters...
    Skylar666 Skylar666 13-15, T 31 mins ago

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    Omg, this sounds sort of like me and my best friend. it's just so many emotions I wabt to get out and I think this is the place to do it. I'm in love with my best friend. It's...
    Daydo99 Daydo99 16-17 33 mins ago

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    Today I'm going to tell my mother that I have Tinea Versicolor. It's a fact that sleep deprivation produces a drunk effect on the brain, so tonight I'm not going to sleep. I need...
    Mewl Mewl 18-21, F 40 mins ago

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    As I lie on the soft, firm sand and listen to the rhythmical breaking of the waves hitting the shore... I turn inwards, I feel the whirlwind of emotions sweeping through me, and...
    Injoy1767 Injoy1767 46-50, F 2 Responses 50 mins ago

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    This is all your fault mikey if only you wouldn't have hurt me maybe I'd be fine ...F-uck you man you hurt me now I want to hurt myself Bc you just had to get pleasure from...
    Allywall Allywall 13-15, F 54 mins ago

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    I lost my virginity at 21. I have contracted Herpes & HPV (HumanPapillomaVirus) at my current age of 23. I feel like i've ruined my life before it has even started from being...
    AFriend1nDeed AFriend1nDeed 22-25, M 57 mins ago

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    Last year I went off of my antipsychotics and I think that I damaged my heart. I've been on them ever since but every time I lay down on my chest or back my heart slows down and...
    Jesusfoundme Jesusfoundme 31-35, F 1 Response 1 hr ago

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    Hello everyone, I'm Heiry (pronounced Haiti) like the country but spelled differently. I know some ppl have a difficult time understanding my name and that's okay! But anyway..so I...
    heirytoni heirytoni 31-35, F 1 hr ago

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    3 weeks ago I was diagnosed with osteosarcoma of the femur with mets in my liver. I had surgery to remove the mets in my liver 3 of the 4 were removed but the 4th could not be...
    0maddi0 0maddi0 16-17, F 1 hr ago

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    It was on July 27th when I had it done, I was in the city with a friend whom I knew for years wanted hers done so badly and I wanted mine done a while ago. She saw that Envy was...
    4NeonFun 4NeonFun 18-21, F 1 hr ago

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    There is so much I want to get off my chest but I literally feel like I have no one. At least not verbally. It seems like at times I almost want to give up on the world all...
    justluvme4evr justluvme4evr 22-25, F 1 hr ago

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    I feel people need to accept themselves more so I want everyone who feels like it to comment your flaws to show those not brave enough to reveal themselves that we all have them...
    NightWriter216 NightWriter216 18-21, M 1 Response 1 hr ago

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    okay so let me just rant really quick: to the guys and gals that want to know if you're attractive: you don't need to be asking these questions. honestly, it makes you look like...
    saraxc saraxc 13-15, F 1 hr ago

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    It comes down to all the men that have lied to me, all my life. My dad, every single boyfriend has been a liar or cheater or often both. I have lied myself and am not perfect, but...
    GamerDustBunny GamerDustBunny 26-30, F 1 Response 1 hr ago

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    This is the first time I'm saying this out loud since it started 17 years ago when I was 15 years old and I really hope no one tells me I'm crazy. I'm tired of being told I'm crazy...
    LewisCollins LewisCollins 31-35 4 Responses Jul 4

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    my baby is 3 months and she had an metabolic crises and had to have two blood transfusions and to hart surgeries in one has anyone been through this if so how long was the recovery...
    littlemissfosha littlemissfosha 26-30 Jul 4

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    To begin with, when I was a kid, I was always rejected by the group, I always felt like I'm special, and that I'm different than my classmates, so I felt a big distance between me...
    simotaqi simotaqi 26-30 Jul 4

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    i think i have special powers too. Can someone name th special powers juss to be clear
    Chamreon26 Chamreon26 16-17, F Jul 4

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    I have so much anger bottled up right now. Most of it had to do with my mother and how she treats me. I hate the feeling of wanting to pop off but it happens so much more now...
    Eg9801 Eg9801 22-25, F Jul 4

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    As a secret crossdresser I'd like to have a secret bf to go with it lol
    itsjasette itsjasette 18-21, F 1 Response Jul 4

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    I have PPMD and it is the most irritating thing ever. Nothing works to help or make it better, except just waiting a few days. It sucks, and i believe only menopause sorts it out...
    Hisinfernalmajesty5 Hisinfernalmajesty5 26-30, F 3 Responses Jul 4

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    I love to have two guys on me at once sub bi male
    reidloose reidloose 51-55, M 1 Response Jul 4

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    I first met my step brother when I came to a new school last year of elementary school. He was in my class but I never really got to know him well. He was popular and I was a...
    morganismyname morganismyname 16-17, F 2 Responses Jul 4

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    I was diagnosed a few months ago and I had a really hard time dealing with it and I still do. I feel like no one cares that I have this disease because it's not cancer, so I won't...
    Haley145 Haley145 13-15, F 4 Responses Jul 4

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    I feel like I'm the only one in my school and in my area who doesn't do drugs/smoke/get intoxicated. I don't go to parties because I know that people just like to get stoned. A...
    emiliadsc emiliadsc 16-17, F 7 Responses Jul 4

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    I'm currently 21 from Australia I've had severe PC and scoliosis for as long as I can remember high school was a nightmare for me I remember never being able to go swimming or...
    bwalsh123 bwalsh123 18-21, M 2 Responses Jul 4

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    I truly believe we have to learn from tough, painful problems, issues and circumstances so we will be able to help people who go through the same ones after us.
    ShesSpiritual35 ShesSpiritual35 31-35, F 1 Response Jul 4

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    I used to have this one friend that was nice in grade 4 and 5. Then he changed he was a complete and udder douchebag just to fit in with his new friend. I felt useless and cheap...
    FarrelTaylor FarrelTaylor 13-15, M 2 Responses Jul 4

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    Happy 4th of July everyone. Hope you have a good one.
    deleted deleted 26-30 Jul 4

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    my dad is not a very good person and I can't really like him because he never give me a reason to love him, my dad has never liked me anyway so when he finds out that I am gay he...
    loneleyboy loneleyboy 13-15, M 2 Responses Jul 4

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    3 days ago myself and entire family lost the most influential person in our lives, my grandmother, best friend, fill in mom, most loving and accepting person I've ever known. such...
    peacefulpasser peacefulpasser 26-30, F 1 Response Jul 4

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    I havent done this in a while and i want some one to do it with.
    Livewire91 Livewire91 22-25, M 2 Responses Jul 4

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    I am American and live in the Midwest, but I have been lucky enough to travel to England twice. On my second visit I stayed for 3 months! It was amazing and I dream of moving there...
    anhonestgirl anhonestgirl 26-30, F 1 Response Jul 4

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    I just want to suck on big beautiful breasts and have the milk drop down my throat...why is that so hard to find? If anyone wants to feed me Lmk 😉
    deleted deleted 26-30 Jul 4

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    The first time I had them it was only on my upper teeth, I think it was when I was nine or ten years old, to straighten them of course, but there was more behind it, I can't...
    SheepCatTheCatSheep SheepCatTheCatSheep 18-21 Jul 4

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