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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. 17 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

    My name is Tracy, I am 49 years old and have had HS since I was about 17, but this disease was only diagnosed with a name about 10 years ago. I honestly did not realize just how...
    pech0252 pech0252 46-50, F 1 Response 16 hrs ago

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    I have not been diagnosed. However, lately I started looking up more information about anxiety disorders. I'm 31 and have been shy and quiet my entire life. I thought it was...
    CamillaRhodes CamillaRhodes 31-35, F 1 hr ago

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    every words thato comes from our mouth has different vibrations and frequencies. i came across this theory when i was browsing books at the bookstore yesterday, but didn't read...
    byul1004 byul1004 18-21, F 13 hrs ago

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    #3 of "Things I am proud of about me": 3. I love to challenge myself and push myself further. Everyone has their own personal struggles in life that they can either face and fight...
    shannonymous shannonymous 18-21, F 2 hrs ago

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    Two Tickets to Haunted Paradise By Paul Dale Roberts, HPI Esoteric Detective HPI (Hegelianism Paranormal Intelligence) International https://www.facebook.com/#!/groups...
    PaulDaleRoberts PaulDaleRoberts 51-55, M 40 mins ago

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    I have HH since I was born. My parents say I used to drip from my feet and arms ever since I was a baby. This is a horrible condition which not many Drs know about. I don't have...
    3Cinderella0 3Cinderella0 31-35, F 1 Response 17 hrs ago

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    My best friend is a guy and we've known each other for almost 9 years already. We constantly get into stupid arguments but they are serious that's just us. I stopped talking to him...
    AlwaysHaveDreams AlwaysHaveDreams 16-17, F 16 hrs ago

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    I'm 24 and i have never been kissed. I'm a bit of a hopeless romantic... Meaning i'm feeling hopeless about finding romance. Haha. But seriously i'm both the romantic and the...
    mynameisdreamer mynameisdreamer 22-25, F 16 Responses 13 hrs ago

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    I love my mom and my grandma but growing up was sometimes really hard for me. I remember waking up in the middle of the night when I was really little so i could bury my head under...
    bsmirror bsmirror 22-25, F 1 Response 12 hrs ago

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    I've been with my husband for 8 years, we've been married for 3. We were high school sweethearts. He's a great guy, but not the most attentive... We don't share many interests or...
    oddbluebird oddbluebird 22-25, F 2 Responses 9 hrs ago

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    In middle school two boys in my class called me "fat, ugly, stupid", but also "autistic retard" (I have Aspergers), "your parents should have used a condom", and "you're so ugly...
    CookieMischief CookieMischief 18-21, F 7 hrs ago

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    Recently I had a campout in a huge Forrest with a few mates. It is a very rural area, it doesn't have any shops or toilets near by, which of corse is a great thing! Well of corse...
    splashy34 splashy34 26-30, M 3 Responses 7 hrs ago

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    Probably the most embarrassing situation I ever have been in... Met a girl online. Talked a lot... She seemed so perfect. Had a really tragic past and I just got drawn in so...
    EmptinessofSeth EmptinessofSeth 31-35, M 3 Responses 7 hrs ago

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    Earlier in the day the Saturday, the one after Good Friday and before Easter Sunday, about 5 or so, I'd said to someone here, I'd better get going, because I have a feeling the...
    Lgl700 Lgl700 51-55, M 7 hrs ago

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    I want to have 2 or 3 of my teeth pulled. All located in the back of my mouth, so no one would really notice it, so I don't mind it. These teeth have been giving me issues for over...
    sugarcakes143 sugarcakes143 18-21, F 5 Responses 5 hrs ago

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    I didn't have support from my friends. I support my friends, all of them, but all I wanted was for them to come together to help me support each other. I am only one boy but yet...
    RandomFriendGuy RandomFriendGuy 18-21, M 5 hrs ago

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    When I first came to EP almost a year ago, I never expected anything besides a little moral support and an avenue to vent about my frustrations as it relates to my situation. What...
    lightblueeyes lightblueeyes 46-50, F 1 Response 4 hrs ago

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    All I know about my biological father comes from my adopted parents&paperwork I found as a 13 year old while kept home from school and ordered to clean whole house. I found...
    UnwantedMutt UnwantedMutt 22-25, M 1 Response 3 hrs ago

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    I don't believe in god but my entire family and closest friends do. They're all catholic. I'm only 16 and hate hiding this from them. I've been so stressed out about it that it's...
    kenlip kenlip 16-17, F 3 hrs ago

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    My depression comes and goes. Sometimes it's bad but not severe other times it's so severe, it becomes a battle I can't over come, a suicidal depression. Recently I was so so...
    juliaek1 juliaek1 13-15, F 2 hrs ago

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    Okay so like this kid is like the epitome of perfection in my eyes at least but he's a year older than me therefore different schools but besides that he's like great but he has no...
    EmotionaLila EmotionaLila 13-15, F 1 hr ago

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    My boyfriend is technically my best friend. He's got a lot of special titles from me. But I'm not really sure I'll ever have a real best friend. The first reason is because I'm not...
    fairytalesandspiderwebs fairytalesandspiderwebs 18-21, F 1 hr ago

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    Travel is a great way of changing your perspectives. I was becoming involved in some directions I didn't really want to go in, with so many aspects of my life at home in France. I...
    aoutdouze aoutdouze 18-21, F 1 Response 18 hrs ago

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    Swag swag swag. I have no life, I'm sure most people expect the least from me but one day my laziness, hunger, awkwardness and antisocial skills will come to use.. I mean they have...
    12blueunicorns 12blueunicorns 13-15, F 17 hrs ago

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    I have this horrible, painful, embarrassing disease as well. I just recently discovered that there was a support group for this. Even though I have my friends and family as a...
    pech0252 pech0252 46-50, F 1 Response 17 hrs ago

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    I used to have them from about the age of four to eight or nine. I feel terrible about what I must of done to my parents. I used to scream in the middle of the night like something...
    cheley cheley 13-15, F 17 hrs ago

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    I have finally told my parents I have Asperger's! Well, I sent them a brief email, I'm still a tad angry that they weren't the ones telling me, 40 years ago. I shall see what...
    Teab Teab 41-45, M 1 Response 14 hrs ago

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    What do I do now because I have a serious crush on my male cousin , I thought he likes me because his actions speak louder then words . We flirt around etc ... But now he is...
    Juiceyangel333 Juiceyangel333 22-25, F 1 Response 13 hrs ago

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    Grade school is one of the unpleasant years of my life, I have been frequently bully no friends at all just by myself always. During this year, I have found a safe heaven for me it...
    alx99 alx99 36-40, F 1 Response 12 hrs ago

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    I have friends. And I love them. The fact that I wanted to make friends at all surprised me. I literally spent the last few years avoiding people because I didn't want to be hurt...
    BleedingOrchids BleedingOrchids 13-15, F 10 hrs ago

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    I don't really have a religion. Although my family are huge Christians. But religion in my opinion is a huge hypocrisy in its self. Like hating something that doesn't hurt people...
    EmotionaLila EmotionaLila 13-15, F 9 hrs ago

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    it frustrates me. i have so many friends who are super shy and embaresed and don't understand just how beautiful they are ! i have this friend Tanika . she is so beautiful ! she...
    MiskaMaskedOne MiskaMaskedOne 18-21 1 Response 8 hrs ago

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    I hate my body so much and yeah I know it's common for women to get it but I have so many of them and have had them since I was 13.. I physically cannot look at my body...
    georgiecrouch georgiecrouch 16-17, F 2 Responses 6 hrs ago

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    Take it easy. Don't jump right in and start making assumptions. Many members here are long time EP users who were here in the very beginning. Take the time to get the feel of the...
    KittenHasaWhip KittenHasaWhip 46-50, F 1 Response 5 hrs ago

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    I have had a Skype account for years but I have never used it.
    JackNJ JackNJ 36-40, M 2 hrs ago

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    My husband was diagnosed a year ago at Cleveland Clinic with SFN from sarcoidosis. He has fluid shifts at times, where he feels fluid building in his joints and his known sarcoids...
    SFNwife SFNwife 46-50, F 2 hrs ago

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    When I was 10 my parents and I visited the concentration camps from WW2 in Poland and I have seen things that have affected me that night. As I was lying down in the darkness, my...
    HeyRainbow HeyRainbow 16-17, F 1 Response 1 hr ago

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    I've always wanted one. I have no guy or girl bestfriends. I've always pictured sending funny pictures to each other always texting staying up all night Etc. Telling life story's...
    PrimadonnaAnnie PrimadonnaAnnie 16-17, F 3 Responses 54 mins ago

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    1. Don't abuse me (At least you can be considerate and not manipulate me or physically harm me, drag me by my hair...etc ) 2. Don't force sex (That's a given) 3. Don't talk to...
    PullingAway PullingAway 22-25, F 43 mins ago

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    My friend made me realize that it was my fault for my boyfriend acting the way he does towards me and he has all rights to be mad at me right now because I didn't see what I told...
    16countrygirl 16countrygirl 16-17, F 1 Response 41 mins ago

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    I was diagnosed with HSV 2 that I contracted from my ex-boyfriend a week ago. I was more hurt having to tell my boyfriend I love so dearly. He took it like a champ at first but we...
    pearl91 pearl91 22-25, F 37 mins ago

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    Ugh, so annoying! I have really long hair, and THICK hair! Trying to brush through it is a living hell. It took me an hour to brush it while I was in the shower. 0.- no joke. The...
    HawaiianPunchz HawaiianPunchz 16-17, F 1 Response 34 mins ago

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    I once was married 9 years to a drug addict alcoholic who blatantly refused help..I tried desperately to help him, until I heard this quote from a professional nurse. Swim for the...
    cinnamonrose cinnamonrose 56-60, F 2 Responses 18 hrs ago

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    Seriously. For nearly two years. Then he attempted suicide a few months ago by slitting his throat because I refuse communication with him. Now I found out he's getting out of...
    Safia Safia 31-35, F 1 Response 18 hrs ago

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    I'm twenty and my friends are all pregnant or too occupied with there boyfriends to have a decent friendship, I get things change and people change and move on but my whole life I...
    brielladivine brielladivine 18-21, F 2 Responses 17 hrs ago

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    I have long hair. I've always had long hair. It grows obnoxiously fast. And I've wanted to cut it short for years. Problem is how. By that I mean how I'll cut it and how I'll deal...
    BleedingOrchids BleedingOrchids 13-15, F 1 Response 17 hrs ago

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    So I just moved into these apartment, and it seems like all the people around here do is have sex. Lol!!! Every time I step outside, all I hear is like people 2-5 apartments, going...
    Subbie4Her Subbie4Her 36-40, M 17 hrs ago

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