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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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    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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    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 the friends I grew up with still in my life. I have the friends I worked with. We send each other gifts or cards, we text and will always stay in touch. But miles have...
    rowenbumble rowenbumble 56-60, F 1 Response 1 hr ago

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    My mother came for a visit to my house 5 years ago and has yet to leave... No seriously. She has been one of the most clingy, needy and emotionally abusive people that I've ever...
    tajadaja tajadaja 31-35, F 11 hrs ago

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    I can never sleep well. I always wake up randomly during the night. I also can't sleep unless i'm really cold, but i still have to have a blanket or two on me. I also have to be...
    white701 white701 18-21, M 5 hrs ago

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    Guys, this (excuse my language) **** is not something to play with. It's not something for little kids and random people to do just for fun. It's meant to be taken maturely, and...
    HannahMarieX HannahMarieX 18-21 3 hrs ago

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    What the heck? I think someone who is reading some of my stories and comments on other stories has been flagging the replying comments. But I don’t know for sure. Comments by...
    Sarahbellas Sarahbellas 26-30, F 1 hr ago

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    I was born on the Philippines. As a baby I was adopted by my Swiss parents. I've always been told I've been a foundling and my biological parents probably died in a storm or...
    mishale80 mishale80 31-35, F 1 Response 9 hrs ago

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    It makes me sad to see so much hate because a lot of people do not have perspective and/or understanding. I always feel the need to defend others, to help them be understood but I...
    topsykrit topsykrit 18-21, F 6 hrs ago

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    The evidence is everywhere--the global climate is changing and we have lots to do with it. Greedy jerks like the Koch brothers are committing crimes against humanity by actively...
    AboveTheTrees AboveTheTrees 46-50, F 2 hrs ago

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    I have earned multiple college degrees and in several different areas. I have dual degrees when it comes to bachelors and masters degrees. Also, I have a law degree. For those...
    middleagedfemalemom middleagedfemalemom 41-45, F 29 mins ago

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    Holy cow. I start my new high school on monday. Im nervous af!. I dont want to be noticed , but of course i have to go and be 6 foot 4 inches. So not being seen isnt easy for me...
    YungKhroniK YungKhroniK 13-15, M 9 hrs ago

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    I always wanted to have a relationship. The longest one was about 9 months thats it. It would be so nice to have one.
    igdesigner igdesigner 18-21, M 8 hrs ago

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    So I have PC and to be honest its not that bad but ocassionaly I get alittle depressed, nothing to bad. The main problem is that I'm insecure with girls and that's causing...
    sweefp sweefp 16-17 7 hrs ago

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    I always will love alvin and the chipmunks Simon was always my favorite when I looked at him for the first time I knew it was meant to be me and him I often got bullied because of...
    Rudolphlover28 Rudolphlover28 18-21, F 1 Response 6 hrs ago

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    I'm trying to overcome it. It's difficult but not 100% impossible. I will get there, it takes time but it is making my new relationship hard. Something has triggered it. I've...
    topsykrit topsykrit 18-21, F 2 Responses 6 hrs ago

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    ... by absolutely no one. I have a terrible singing voice. But I'm fantastic at lip-syncing :D
    lulubees lulubees 18-21, F 4 hrs ago

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    Ok so for the past week or so my dreams have been sooooo vivid! And one of my dogs has been in every single one of them ! They have been weird dreams that don't make any sense! In...
    Kay92kay Kay92kay 22-25, F 2 Responses 3 hrs ago

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    I'm a 34 G now. My breasts have become larger as I have developed a little belly and put on some weight.
    rachelle87 rachelle87 26-30, F 2 hrs ago

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    I have a tibial plateau fracture. I have 10 more weeks of no weight bearing and I might lose my mind
    susanj34 susanj34 36-40, F 2 Responses 2 hrs ago

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    I have a strict morning routine. As soon as I wake, I go into the walkin closet of my soul. I pick out a smile for my face, a thankfulness for my heart, a helpful task for my hands...
    GJOFJ3 GJOFJ3 56-60, M 34 mins ago

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    Can't sleep at all. People standing outside house staring but have no facial features. Keeping curtains closed.
    woodsetton woodsetton 22-25, F 11 hrs ago

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    What does a glance mean? It's amazing how heavily a pair of eyes can influence a thought process. The ride of emotions and possibilities, all very entertaining to ponder on. I know...
    s0undgarden s0undgarden 16-17, M 10 hrs ago

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    I have a soft voice. It resounds with a slight huskiness. I am never shrill. My accent is particularly Niçoise. A mixture of French, Provençal, and Italian.
    Astrucbmt Astrucbmt 22-25, F 1 Response 9 hrs ago

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    I have visited 14 countries and I love travelling!!
    linbus linbus 31-35, F 8 hrs ago

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    I am so many nick names my name is Emily so I have been call em emi Emstar E bunny m an m and so many most
    wedgiefan247 wedgiefan247 16-17, F 8 hrs ago

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    He was only 36 years old and left two small children behind. He dies only two weeks after he was first diagnosed, he didn't have a chance. He was a quite and sweet person who was...
    Amillionstars Amillionstars 36-40 8 hrs ago

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    I often have dream deja vu. I visit a place in a dream, far different than waking reality, and later on in life whether it be in a few weeks, months or years I feel I dream of...
    topsykrit topsykrit 18-21, F 1 Response 7 hrs ago

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    I have a few but it differs to who is talking to me. (Wyatt) y, W, and my moms personal nickname Button.
    Sesshomaru031 Sesshomaru031 16-17, M 1 Response 6 hrs ago

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    Well I had another account which I deleted and then made this one, my old account was "Catmando05" so of yous may have read my posts on there before I deleted it. My ex is still in...
    domancat domancat 22-25, F 5 hrs ago

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    I have. Against flying insects. Flies I can handle, but everything else... like bees, wasps... even butterflies are a horror for me. It's worse inside than outside the house. But...
    Brokenshadowwings Brokenshadowwings 31-35, F 2 Responses 5 hrs ago

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    soo broken i cant feel anymore exhausted from tears i ask why they lie where are such girls like the fairytales all i have seen mostly are not ever close to those fairy tales...
    DevilPARADISE DevilPARADISE 18-21, M 2 Responses 5 hrs ago

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    sometimes I wonder what life would be like if my brushes with death had happened. would my family be in a better place? would my children have better lives? would the everyday...
    tsnuggles tsnuggles 36-40, F 4 hrs ago

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    If life was only meant for absolute enjoyment, it wouldn't have been as gloomy as it actually is. It would be much better. We wouldn't be suffering from flus, coughs, sickness...
    ladybug96 ladybug96 18-21, F 6 Responses 4 hrs ago

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    I remember the first tattoo I ever got! Seems like such a long time ago! So small and discrete! Now I have a sleeve a leg piece and several smaller tats! And I can't wait for more...
    Kay92kay Kay92kay 22-25, F 3 hrs ago

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    I am a child in the mind. I don't know what I'm doing. I don't know where I'm going. I'm pretty much just moving about. That's how it feels. But I do have wisdom. I'm an old soul...
    SheSaidx SheSaidx 22-25, F 3 hrs ago

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    Stop wasting your time. If you are unhappy get a ******* divorce and live your life the way that you want to. You can't have your cake and eat it too. Pick one. Life is too short...
    DrexelFloriene DrexelFloriene 36-40, F 3 hrs ago

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    Everyone makes fun of how I talk, I'm from Kentucky, I have a some what thick accent because I cover it up the best I can so they don't always say anything. I mean I like my accent...
    emmyloo29 emmyloo29 18-21, F 3 hrs ago

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    I've just finished my first round of 14 treatments. I've noticed better overall mood and stability but suffer the memory problems many people have discussed here. To be honest...
    BohemianTragedy BohemianTragedy 46-50, M 2 hrs ago

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    Does anyone else make their own Vanilla Extract? As often as I make it I always seem to have a list of people who want more  : /
    cindymariee cindymariee 51-55, F 2 hrs ago

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    It feels like I have this wall around me. Anyone even tries and they get deflected. It's especially bad when its s3xual (seriously EP quit with the stupid censoring). Anyway, when...
    Lov3intheasylum Lov3intheasylum 31-35, F 2 hrs ago

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    Have to go badly! I'm about to burst! Who wants to talk and help me hold on?
    larrrrrrryyyy larrrrrrryyyy 22-25, F 2 hrs ago

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    Even though I'm 15 I have to be in bed by 10
    Jessica99x Jessica99x 13-15, F 2 hrs ago