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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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    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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    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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    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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    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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    Related Experiences

    I am 16 and have wanted to have sex so badley since I was 13. I am now legal so I just want to do it. I need a girl of any build but a nice personality :) message me or heart this...
    goonteam goonteam 16-17, M 1 Response Jul 23

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    I literally looked at something in my dream and said "you aren't real" and my mind woke up but I couldn't move or anything. I felt like things were after me. I don't think I'll...
    quirkyme quirkyme 13-15, F 1 Response Jul 23

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    So i started talking to this guy this summer and we talked a lot over text for like 1 or 2 months... I didn't exactly like him like him but then we kinda hung out and have fooled...
    MindOfManyThoughts MindOfManyThoughts 16-17, F 1 Response Jul 23

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    Today i put my two week notice in with the job i have been with for over a year to make the biggest change of my life to be a trucker. Will be hard not seeing my son as much but I...
    rgagich rgagich 22-25, M Jul 23

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    i just received a reply of text message from him "good night"...I'm so happy knowing that he find ways and sometimes break the rules...really love knows no bound, no boundaries, it...
    hannagrace hannagrace 31-35, F Jul 23

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    Junior high.. ugh.. the worst, it seems. I was bullied a lot by one girl in particular. I guess it was really easy for her to bully me. I was quiet, shy, and a little strange. I...
    ShimmerSquirrels13 ShimmerSquirrels13 22-25, F 1 Response Jul 23

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    I have never had sleep paralysis but it sounds horrifying!!
    abbyseaney abbyseaney 16-17, T 3 Responses Jul 23

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    I have a couple, one which no one knows. Another a few people know.. one of those people was an "oops, I let it slip" and my mom got a phone call from some place that deals with...
    ShimmerSquirrels13 ShimmerSquirrels13 22-25, F 1 Response Jul 23

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    I came out as bisexual to only some people in my family; if my mom or grandparents find out I'll be disowned. :/ I haven't come out as Agender to anyone yet...
    SomethingGrimm SomethingGrimm 16-17, F Jul 23

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    When I was 18 I got diagnosed with chronic pancreatitis and have had lots of test done but still live everyday in pain. Is this normal for pancreatitis or has anyone have this...
    Josh3945 Josh3945 18-21, M Jul 23

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    The women of today have tutorials on how to walk in high heels. I wonder what the tutorials were like when foot-binding was popular. I also wonder if the women of tomorrow will...
    mareliberum mareliberum 26-30 1 Response Jul 23

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    I constantly have fights with my mother. Full-on screaming fights. She is almost 50 years old and yet chooses to go for the "I guess I'm a bad mother whoops" line at the first sign...
    HexTek HexTek 16-17, F 4 Responses Jul 23

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    I recently got diagnosed with ADD. It makes sense when I think about it but while it gives me some hope of achieving academic sucess. It feels like I am defective...its a bit of a...
    drakneko drakneko 22-25, T 1 Response Jul 23

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    I was diagnosed with ADD when I was 14 (I am now 20.) and have tried almost all of the medications out there. So far vyvance has worked the best for me. I'm currently on it and...
    krazykay20 krazykay20 18-21, F 2 Responses Jul 23

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    Yup cuz they understand me more than girls .and they don't judge me like girls do and when I wear a t-shirt and jeans they don't tell me u look like a boy they only tell me that I...
    DrowningInPain2 DrowningInPain2 13-15, F 1 Response Jul 23

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    I'm gay and it's hard enough to find people where I live, I found a guy or he found me on the computer and it was a long distance relationship, which I knew would be terrible in...
    EricRadliffe EricRadliffe 18-21, M 2 Responses Jul 23

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    My dog (My sole purpose of life) passed away 2 years ago. I would have dreams I was at my old house, he would come running in and I would acknowledge it was a dream, I knew he was...
    Exoduss Exoduss 16-17, F 1 Response Jul 23

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    I do not have a friend, but you
    xhmkq8 xhmkq8 13-15, M 1 Response Jul 23

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    Or, at least, that's one of the things I was diagnosed for, and I don't think it's right. I started taking lithium, and about three days in, I had a STELLAR day. Then it went down...
    DanicaER DanicaER 36-40, F Jul 23

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    It would have to be Hear No Evil, See No Evil or Supertroopers. It's a toss up!
    AuntieShani AuntieShani 36-40, F Jul 23

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    Let's face it in life, if your too stuck up in the past-you get buried by it. So consumed by it that it makes you edgy and degrade yourself even if you have chances to get your...
    Sei02 Sei02 18-21, F Jul 23

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    I have DirecTV. Love it! Had it 4 years, low price great service!
    AuntieShani AuntieShani 36-40, F Jul 23

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    Hello,my name is jacob but i like to go by zoey. I have spent the last seventeen years of my life alone because I am a girly-boy. Now I have the Internet and sites like this...
    zoey764 zoey764 18-21 1 Response Jul 23

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    Have a crush on one of the doctor.... Omg he's so perfect, handsome, kind, and smart 😬😆😅😅
    hzel1323 hzel1323 26-30, F Jul 23

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    every night of day,also.and ı believe there is real something in them anymore.if you have same experience,sharing wth someone else may gain you insight about your experience:)
    idunnowhttodo idunnowhttodo 22-25, F 1 Response Jul 23

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    And all I'm asking for is to get my dignity back, get some apologies. I've begged for some. I never had them. She must have enjoyed humiliating me more instead.
    Apoil Apoil 36-40, M Jul 23

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    Please don't dare me - One part of my personality that I can't seem to tame no matter how mature I am in other ways - when I am dared to do something I find it almost impossible...
    visionofvenus visionofvenus 41-45, F 1 Response Jul 23

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    The eerie sound is painfully ripping through your very ears, the deafening sound of her voice nears, The Queen of Darkened Heart comes for you with your foolish invite into your...
    SassyBabe39 SassyBabe39 41-45, F 1 Response Jul 23

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    I just don't have a reason to live. Anymore
    Idonthaveanameanymore Idonthaveanameanymore 18-21, F 1 Response Jul 23

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    My gramma hates when I date nonblack guys. It's actually pretty amusing to me. Sometimes people's ignorance baffles me so much that I can't help but laugh. I dont have à préf...
    Lala311 Lala311 18-21, F 3 Responses Jul 23

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    Am 15 .. Yea I have an idea of what love is :) i know when i miss someone a lot i know when what i feel is real and when am just pretending for myself or the person. Don't tell me...
    Natha165 Natha165 13-15, F 1 Response Jul 23

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    Sorry i havent been on much lately, i was going through some stuff and i started a new job last week~ and dont think im ignoring you if i dont reply to messages :( i just have had...
    Jessiesgirl98 Jessiesgirl98 16-17, F 1 Response Jul 23

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    I was part of this program that allowed us to watch school plays and critique them( write reviews) I honestly just signed up for it because it would mean another good thing on my...
    neptunechild neptunechild 16-17, F Jul 23

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    there's this guy who broke my heart and I still have feelings for him. can anyone give me advice on how to forget about him completely?
    meguare meguare 13-15, F 4 Responses Jul 23

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    So it's wrong to have sex for money (not saying I do) but nothing wrong with giving yourself away for free?
    LikeAPrayer LikeAPrayer 18-21, F 6 Responses Jul 23

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    I am 52 and at the age of 21 I had my first blood work because I was pregnant. They told me I was gestational and not to worry. It my diabetes never went away. So my gp treated me...
    NancyVK NancyVK 51-55, F Jul 23

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    I wonder how boys feel when they’re in love. Do they get butterflies? Do they have you on their mind 24/7? Do they wait for you to come online for hours? Do they smile at random...
    RavenS45 RavenS45 18-21, F 2 Responses Jul 23

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    Normally, my eyes are light blue. Rarely, they are bright silver. Twice they have been a lilac/periwinkle color. They can become dark gray, ocean blue and a very deep blue (when...
    AlleywayGospel AlleywayGospel 26-30, F Jul 23

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    I love my baby cousin! She's so adorable, even for as much of a brat as she is, I hope I have a daughter just like her. Love you Miss B
    TheAmazingSpiderJoe TheAmazingSpiderJoe 18-21, M 1 Response Jul 23

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    I have blue eyes weird huh?
    KuTcH KuTcH 18-21, M 1 Response Jul 23

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    About 2-3 months ago, I woke up with the most EXCRUTIATING pain in my arms and shoulder joints. I could not lift myself off the bed and could not put on socks. I was anxious...
    MysticTraveler MysticTraveler 51-55, M 2 Responses Jul 23

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    We want to talk to other DID systems :) if you have DID or DDNOS-1 and want to talk, message usss ❤️
    Yourguardianangel9613 Yourguardianangel9613 16-17, F 1 Response Jul 23

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