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I Have Monilethrix

A Monilethrix anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Monilethrix. You're not alone. 10 People

    I see that others have posted about this,

    but not much seems current. I am a 34 year old female. My father was the first to express the gene. My brother and I have what I consider "moderate" expression (since I can't find a good scientific source). My son has a severe expression. He's 3, and will probably never...
    kimber0423 kimber0423 31-35, F Apr 1

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    Living With Monilethrix

    I am 24.. soon to be 25. I have monilethrix as well. My moms side of the family does. We all vary in degrees of how bad it is. Due to surgeries i've had and major stress, it has gotten worse. It's a bummer to be in the beauty industry and knowing one day, the hair on my head...
    fingerblinger fingerblinger 22-25, F Sep 17, 2012

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    Monilethrix

    Howdy. I'm 20 and am the only person in my family suffering from Monilethrix. I've been inspired by my disorder to become a geneticist or genetic counselor, so I'm currently studying at University in hopes of earning a BS in Biology. I'll go on to grad school from there. As a...
    CaitlynAlyssa CaitlynAlyssa 18-21, F 1 Response Mar 25, 2013

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    My Life With Monilethrix

    I'm a 13 year old boy and have monilethrix. My dad has it, but you can't really tell because he shaves his head. My sister has it and she wears a wig. I used to get teased a lot about it, but it's quieted down since I was younger. I still get asked about my hair frequently when I...
    Depoymail Depoymail 13-15 1 Response Jan 3, 2012

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    I Have Monolethrix

    Hey - I know there are more of us out there. I am a guy, 36, and I shave my head, but I have a 3 year old neice who is affected who can not. What should she do? Wig? Has to be difficult for girls. I have a twin sister who was slightly affected on the back of her neck, but it has...
    NDomek NDomek 36-40, M 3 Responses Dec 28, 2009

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    Related Experiences

    My head and thoughts are no longer of my own. I cannot tell you the month day or time. I do however know the year is 2014 and august 7 rapidly approaches whatever today's date...
    simpleandsweet36 simpleandsweet36 36-40, F 2 hrs ago

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    I have had morphea since 1965 at the age of 14. Back then it was extremely rare to find a doctor who even knew what morphea was. My morphea started as a round spot on my wrist...
    Muffygirl Muffygirl 61-65, F 23 mins ago

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    People have ****** me over to much ill make it short and sweet for yall because if I told you why I have trust issues and how many people have hurt me then wed be here for a long...
    BornDifferent BornDifferent 18-21, F 1 hr ago

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    Have you ever hated anyone who made your life a living hell? A sick and twisted psychopath, who gets off at seeing you in pain. I have had an experience with such a person, it...
    BleedingPrimrose BleedingPrimrose 18-21, F 1 Response 1 hr ago

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    Ugh, I'm so socially awkward due to my anxiety and it bugs me. I can't manage to sleepover anywhere. I always end up coming back home. I have to keep my phone charged and on me 24...
    TheSongPlaysWithin TheSongPlaysWithin 16-17, F 1 Response 2 hrs ago

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    Made a few dumb choices I suppose. But don't we all? Said a few things I definitely shouldnt have; When i get ticked off i say things on my mind that really no one should ever hear...
    DontWaitPursue DontWaitPursue 18-21, M 1 hr ago

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    my message to another EP member: once you accept death (like I have) you make yourself a work of art. seriously, look at me. would I act the way I do if I hadn't pondered suicide a...
    mierdamundo mierdamundo 31-35 1 Response 1 hr ago

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    I have been dreaming about my ex boyfriend lately, but I honestly don't think of him anymore. I know it means something but I don't want to talk to him anymore.
    Jelliii Jelliii 22-25, F 42 mins ago

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    How can someone ever love me if I don't like myself sometimes. I have my good days and my bad days. Honestly today feels like one of those bad days. Sometimes though I come to the...
    Savone52798 Savone52798 16-17, F 3 Responses 24 mins ago

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    I'm 21 and I didn't get diagnosed till last year in May. It pretty much explained everything I was going through, the panic attacks, the endless worrying, the nausea and the...
    chrisxderp chrisxderp 18-21, F 17 mins ago

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    It is so frustrating to have anxiety. Along with all my other health issues, anxiety and depression are much more debilitating. I would never wish anxiety upon anyone. The question...
    cassidybute cassidybute 18-21, F 5 Responses Jul 1

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    I have been improving my belief in my self More lately it's wonderful
    rosiebloom rosiebloom 22-25, F 1 Response Jul 1

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    This is by far one of the funniest things I have ever seen !
    LovelyLadyJ LovelyLadyJ 22-25, F 6 Responses Jul 1

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    You have to do some thing different to get some thing different
    rosiebloom rosiebloom 22-25, F 1 Response Jul 1

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    Her name is Darlene and she is a piece of crap. He heat doesn't work in the winter. Her windshield is extremely cracked. Her tires squeak. Her driver side door doesn't open from...
    sunflowerpet sunflowerpet 18-21, F 2 Responses Jul 1

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    I am not your average skinny white girl. I am a thicker girl and I am trying to love the way I look. I don't have the skinny waist and the tiny thighs, but the world wasn't meant...
    ericaaa987 ericaaa987 13-15, F 1 Response Jul 1

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    I was totally in love with this one guy thinking we would last forever. He was very religious and turns out I guess god told him to stop. So then our relationship ended and he...
    Sparklefuck Sparklefuck 13-15, F Jul 1

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    To anyone with any questions about POTS or wanting some enlightenment or to have a laugh check out my blog at www.potsisthepits.com
    cassidybute cassidybute 18-21, F 2 Responses Jul 1

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    There comes a point in every relationship where we know we need to walk away. Even when every instinct in us is screaming to hang on for just a little bit longer, we don't have it...
    diablesse34 diablesse34 46-50, F 21 Responses Jul 1

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    I was at a swimming pool, sitting near the edge, and a man had his leg caught up with a huge metal plug and kept being dragged beneath the surface. I was clinging to him with all...
    AngelofPink AngelofPink 18-21, F 2 Responses Jul 1

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    Never have, never will. If she isn't sure who she wants, then I don't want her.
    reelman4372 reelman4372 31-35, M 1 Response Jul 1

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    When I was in my twenties and was in a monastery actually studying to become a Franciscan brother. One week end we were having a retreat and during the singing of a song which...
    mike52ad mike52ad 56-60, M Jul 1

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    Thats my problem, up there...yup , absolutely the big problem... Again.. Should have kill someone
    Tatatatatatatad Tatatatatatatad 18-21, M Jul 1

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    I feel really accomplished today.. For any and all who will be following my story - I made this blog for a purpose. When I got smacked with a DUI I knew I needed to find people who...
    RiseAbove222 RiseAbove222 22-25, F 1 Response Jul 1

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    But I'm starting to take things one step at a time. I'm the type who is easily gets attached to people yet having a hard time letting go of something or to someone. I've decided...
    raldy raldy 18-21, F 1 Response Jul 1

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    None of the stuff I have posted in this group has actually been a proper random thought.
    Ridiculousity Ridiculousity 18-21 Jul 1

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    ove never rly been the type to be all a hunky guy walking across the street cute. even if he is, I'm not the one that says it out loud even if my friends do. I've been the type...
    cocopuffff cocopuffff 13-15, F 2 Responses Jul 1

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    I am so indecisive. I hate picking a line at the grocery store or at the bank drive through. I ALWAYS pick the wrong one! I am guaranteed to pick the line where the person in...
    AlbuquerqueJay AlbuquerqueJay 31-35, M Jul 1

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    I feel unwanted in the world, and feel like I have to work twice as hard, because of my skin color, along with the politics that plague me.
    supershelb supershelb 16-17, F Jul 1

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    13 yr old girls: I have suffered a lot in love. Its time i live my own life. Me: Who the **** made you suffer??Mickey mouse?
    sasunaruizlove sasunaruizlove 22-25, F 6 Responses Jul 1

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    My prophetic dreams always revolve around my friends and family. As of yet I have not experienced a prophetic dream where it's focus was on a event or a stranger. I get these types...
    Liv4Life Liv4Life 18-21, F 1 Response Jul 1

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    Is it wierd that I have hung around a guy friend naked
    abrown1233 abrown1233 18-21, M 8 Responses Jul 1

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    Easier To Run- by Linkin Park It's easier to run Replacing this pain with something numb It's so much easier to go Than face all this pain here all alone Something has been taken...
    ArrowPewPew ArrowPewPew 18-21 1 Response Jul 1

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    I think i had this happen to me a few times, once was when i was pregnant with my second son. It was in the day and being about 6 months pregnant i was so tired so decided to have...
    Gentleandlovingsoul Gentleandlovingsoul 36-40, F 3 Responses Jul 1

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    I just met him three days ago but he's so hot and sweet! He makes me smile so much. He says he gets out in 2 months! He's been in there for 4 years. He told me he was put in...
    Crazymotrucker Crazymotrucker 18-21, F 2 Responses Jul 1

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    More than most people. I have two of the smartest and most loyal pooches you'll ever meet. One is my alert dog and the other one is just my baby, though he has learned a lot from...
    saltloveandlight saltloveandlight 22-25, F 2 Responses Jul 1

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    OK so I am 16 and I have never had a girlfriend in all my life. Is this normal or do girls just don't like my looks,hobbies and personality.
    ReeceDF98 ReeceDF98 16-17, M 4 Responses Jul 1

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    Have you ever been driving and get so caught up in what you're thinking about you totally miss your turn and find yourself way off track ?
    wolfknot wolfknot 26-30, M 10 Responses Jul 1

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    Sometimes when I'm in that after-purge state, looking at myself in the mirror, I think about the first time my parents called me fat. I think about the weigh-ins and how humiliated...
    Anniethinksyourebeautiful Anniethinksyourebeautiful 13-15, F 1 Response Jul 1

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    Try everything once in the present then you won't have regrets in the future
    purpleflowers22 purpleflowers22 18-21, F 1 Response Jul 1

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    My family hates that I have a tattoo and that I want more....
    katieexx333 katieexx333 18-21, F 5 Responses Jul 1

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