Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    I wasn't me in this dream; my soul essence was the same but my physical body, identity and reality vastly different and removed from what I am experiencing now and "who I am" today...
    PaxTerra PaxTerra 18-21, F 22 mins ago

    Your Response

    Cancel
    Selfish Self-centered Dolts!!! If you read a question in question and answer and then send the asker a private message with your answer stay away from me! I am contemplating...
    LadyGypsy LadyGypsy 36-40, F 1 Response 44 mins ago

    Your Response

    Cancel
    I sit and wonder how I got where I am today. Although not exactly how I thought it would be, but not that bad at all either. I am strong person, 5'3 and 105lbs of me. I suppose you...
    Queenofhearts23 Queenofhearts23 31-35, F 49 mins ago

    Your Response

    Cancel
    If you really think about it -legitimately sit and think about it- the idea that this unconquered misery of yours is born of deficient chemicals is quite ridiculous- and...
    LittleWhiteRoom LittleWhiteRoom 18-21, F 49 mins ago

    Your Response

    Cancel
    Every time I gave this man another chance he interpreted it as me valuing myself as worthless, having no boundaries, and treated me as such.  He told me he loved me. He got...
    Faerylight Faerylight 41-45, F 1 Response 2 hrs ago

    Your Response

    Cancel
    Every time I gave this man another chance he interpreted it as me valuing myself as worthless, having no boundaries, and treated me as such.  He told me he loved me. He got...
    Faerylight Faerylight 41-45, F 1 Response 2 hrs ago

    Your Response

    Cancel
    1. I'm afraid of people and can't socialize. 2. I have hurt people in the past to make me feel better about myself. 3. I'm the ugliest person I have ever seen. 4. I'm not skinny...
    brokenxwings0 brokenxwings0 16-17, F 1 Response 4 hrs ago

    Your Response

    Cancel
    I'm 20 years old, everywhere I go they ask how I'm doing in high school. When I apply for jobs they ask to see my ID, because the job requires you to be 18 or older, and they just...
    somegirl000 somegirl000 18-21, F 4 Responses 6 hrs ago

    Your Response

    Cancel
    Last night I dreamt that I went over to his house and for some reason my mother kept on getting large packages delivered to his house... Big boxes sitting in a stack on his lawn. I...
    Orangerocket Orangerocket 36-40, F 6 hrs ago

    Your Response

    Cancel
    To my father, my abuser for 25 years: I am writing to inform you that I know exactly who and what you are. Additionally, despite your many years of bullying & brainwashing...
    wowodeals wowodeals 26-30, F 1 Response 6 hrs ago

    Your Response

    Cancel
    To my father, my abuser for 25 years: I am writing to inform you that I know exactly who and what you are. Additionally, despite your many years of bullying & brainwashing...
    wowodeals wowodeals 26-30, F 6 hrs ago

    Your Response

    Cancel
    To my father, my abuser for 25 years: I am writing to inform you that I know exactly who and what you are. Additionally, despite your many years of bullying & brainwashing...
    wowodeals wowodeals 26-30, F 6 hrs ago

    Your Response

    Cancel
    I had 5 surgeries, 3 on my left ankle at age 15 and 2 on my right foot at age 16. I am almost 22 now and I still can't run, still have constant pain, still have serious weakness in...
    countryqueen623 countryqueen623 18-21, F 4 Responses 6 hrs ago

    Your Response

    Cancel
    I think I have finally figured out just what I want to write, I wondered for decades if I was doing the right thing in helping his father and others keep my husband under their...
    isis55 isis55 51-55, F 1 Response 7 hrs ago

    Your Response

    Cancel
    I've been having this problem for a while now. While I'm in school I usually don't go to sleep until like 12:00 or 1:00. But since my summer vacation started.... I haven't been...
    cutekittycat cutekittycat 13-15, F 7 hrs ago

    Your Response

    Cancel
    i don't know if i have DID but i know i have a Dissociative Disorder not otherwise specified. i have different "moods" i get into for different situations. like i can't be the...
    LITVET LITVET 41-45, F 1 Response 7 hrs ago

    Your Response

    Cancel
    I have a bracelet that I wore every single day until just recently, the clasp broke. I was scared that it broke because I had never ever removed it, not for a shower, not even for...
    salty2013 salty2013 31-35, F 7 hrs ago

    Your Response

    Cancel
    I always hated when people would say you can't have a best friend of the opposite gender because it always ends in a bad relationship. I was lucky enough to have met my best friend...
    silence3412 silence3412 16-17, F 1 Response 8 hrs ago

    Your Response

    Cancel
    i have a boy friend/classmate who confessed (in summer) that he likes me and is serious, we have texted over summer. However, since the school started we havent been talking like...
    bigbangvip21 bigbangvip21 18-21, F 1 Response 9 hrs ago

    Your Response

    Cancel
    Every day is just a repetitive cycle. I wake up early in the morning, I survive the day, go home, then rest. It just goes on and on and on. I'm tired of this. I don't have someone...
    HeartsBlossoms HeartsBlossoms 13-15, F 9 hrs ago

    Your Response

    Cancel
    Diamond studs and a Gold chain with a diamond pendant that I have been wearing since last 10 years.
    Silentstorms Silentstorms 26-30, F 9 hrs ago

    Your Response

    Cancel
    My grandma had Alzheimer's disease before I was born then passed away when I was in high school. My dad always tells me that she's a strong woman and if she didn't have it, she...
    Roshiela Roshiela 18-21, F 9 hrs ago

    Your Response

    Cancel
    The Family Albums....This winter while chillin' out in Florida, my Grandfather asked me to take on the task of transferring his many photo albums from Film to Digital, after he...
    LucyLutz LucyLutz 18-21, F 1 Response 9 hrs ago

    Your Response

    Cancel
    I have a fantasy of getting with a younger person 💌
    Kellybuba254 Kellybuba254 16-17, F 3 Responses 10 hrs ago

    Your Response

    Cancel
    I have PTSD. The first time I was told that I have PTSD was at the age of 11. This was after I was molested by my step grandfather for 3 years and by my step brother for 2 years...
    alantae14 alantae14 13-15, F 5 Responses 10 hrs ago

    Your Response

    Cancel
    First off about me - I'm a 28 years old male, work out regularly, have a good job with a few artistic hobbies, am fairly good looking in that women make passes on me and am a...
    Ravinman Ravinman 26-30, M 10 hrs ago

    Your Response

    Cancel
    Almost a year since I decided to stop doing what I was and I'm so proud of myself. I haven't touched it in almost a year. Just shows what will power and determination can show...
    LittleBeelzebub LittleBeelzebub 18-21, F 5 Responses 11 hrs ago

    Your Response

    Cancel
    It has been 7 months since my separation from my husband. I've moved on but he doesn't know that I moved on with another man. My husband wants to start over but I don't. We text...
    nolasanchez30 nolasanchez30 31-35, F 1 Response 11 hrs ago

    Your Response

    Cancel
    I have not personally had ECT, but my brother did in the 60's and I have some questions. Do any of you remember the pre treatment? Do any of you remember anything about the...
    emmabovary13 emmabovary13 56-60, F 11 hrs ago

    Your Response

    Cancel
    I have anger issues and the problem is you **** me off and your dealing with the devil so just a warning to anyone before they text me **** me off and I'll hunt you down
    Dragonslayer16 Dragonslayer16 16-17, M 11 hrs ago

    Your Response

    Cancel
    RIP Nip you are gone from this world and even though i have a new puppy Poppy you are still my first and you will never be forgotten especially buy that vet who still has a mark on...
    candysissyfag candysissyfag 26-30, T 5 Responses 11 hrs ago

    Your Response

    Cancel
    I wont lie, I love girls who don't wipe and have poo stained panties.
    onehandmonkey onehandmonkey 46-50 11 hrs ago

    Your Response

    Cancel
    Thank God I have an innie because I like to wear a lot of bikinis during the summer. My cousin has an outie and its very distracting.
    ChelseaMonroe ChelseaMonroe 26-30, F 1 Response 11 hrs ago

    Your Response

    Cancel
    And it feels so good. It's the only thing (of myself) that I'm actually really proud of. I used to be the type of guy that sits in front of his computer for entire days/nights...
    ReeseTech ReeseTech 18-21, M 12 hrs ago

    Your Response

    Cancel
    I was bowled over by an absolutely stunning lady at work today! To me she was the definition of beauty; tall, very dark hair, pale complexion, freckles, and amazing eyes. Her...
    unluckE unluckE 31-35, M 1 Response 12 hrs ago

    Your Response

    Cancel
    It really is messed up. Due to insomnia, anxiety, and a physical medical condition ( cervical dystonia ), I'm always up really really late, causing me to sleep until 12-2PM on...
    PsychGirl94 PsychGirl94 18-21, F 4 Responses 13 hrs ago

    Your Response

    Cancel
    I can't go out most days. If there's too many people, I stop breathing . Too many people staring at me and looking disgusted. I cant stand in a line, the people behind me can see...
    altochick0290 altochick0290 22-25, F 3 Responses 14 hrs ago

    Your Response

    Cancel