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

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. 11 People

    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 22-25, F 1 Response Mar 25, 2013

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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, 2014

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    Hello my fellow EP members.I would like to share a personal experience that recently happen to me.I recently have been going threw some personal issues with my Family.I have been...
    Fruitypunch15 Fruitypunch15 31-35 15 hrs ago

    Your Response

    Cancel
    REAL TALK POWER'S OF ENERGY GREETINGS!.. Its Me Icey! The Energy Manipulator, How are you all?.. Me? Im Well Thanks..And I've Got so much Stuff to talk to ya'll about! Its not...
    icey1 icey1 22-25, M 14 hrs ago

    Your Response

    Cancel
    Have any of you fully Gained your trust back up ? Is it truly worth working out ? I have read where some marriages are stronger after the apocalypse , how fu..ing long does it...
    jocu123 jocu123 31-35, M 4 Responses 14 hrs ago

    Your Response

    Cancel
    "Booksmart" "You don't use your brain" "Do not make decisions on your own anymore, ask me before you do anything" "F*** U" "Stupid" "Lazy" And that's not even half of it. I can...
    DearYou DearYou 22-25, F 1 Response 4 hrs ago

    Your Response

    Cancel
    I have been thinking about how many friends I have lately because well, I've been attending a few weddings and realized that if I were to get married, I would not have a full line...
    disastercupcake disastercupcake 26-30, F 1 Response 3 hrs ago

    Your Response

    Cancel
    I have to go to my grandmas for dinner tomorrow and I haven't seen this grandma since thanksgiving I haven't ate in a long time and I've been really dizzy and haven't felt well I...
    butterflybaby123 butterflybaby123 13-15 3 hrs ago

    Your Response

    Cancel
    Life's hard when I'm away from the one I love because of school life abroad, I made someone I love upset and even cried without even noticed that, I know it's hard since we have...
    Mizter18k Mizter18k 22-25, M 3 hrs ago

    Your Response

    Cancel
    My 18 year old stepdaughter Kayleigh is a great girl with a big heart and I want so much to have a good relationship with her but it is a bit hard. I have only been married her her...
    ag00dwife ag00dwife 22-25, F 1 Response 2 hrs ago

    Your Response

    Cancel
    I don't know why a part of me feels broken often times. As if I was empty. I manage to be good, to be kind, gentle and loving all the time but those things I do couldn't satisfy me...
    diane1996 diane1996 18-21, F 6 Responses 16 hrs ago

    Your Response

    Cancel
    I have some good online friends, but no real life friends. My family rejects me and ignores me. I have a partner, but even he isn't as much "there" as he used to be. On the up side...
    UnwantedPup UnwantedPup 31-35, T 4 hrs ago

    Your Response

    Cancel
    It's not everyday. It's not all the time. But I have it. And they gave me medicine for it. But I stopped taking it a long time ago because I wanted to see if I could feel better...
    Allforaview Allforaview 18-21, F 3 hrs ago

    Your Response

    Cancel
    I actually have two. This is about the younger of the two, Caleb who is 16…. This morning Caleb caught me looking at him and smiling. He got very self conscious like teen boys...
    ag00dwife ag00dwife 22-25, F 3 hrs ago

    Your Response

    Cancel
    I have been gaining weight over the past few years and eat and drink what I like. I have noticed that my family is starting to get fatter as well. Probably our portion sizes and...
    Jackincontinent Jackincontinent 46-50, M 2 hrs ago

    Your Response

    Cancel
    I have a crush on a it on Tinder... Idk if he only wants sex but we talk sexy all the time which I love. he's so cute and can turn me on like THAT haha We also talk about our lives...
    WhatChrisDid4Love WhatChrisDid4Love 18-21, M 19 hrs ago

    Your Response

    Cancel
    Yup and I never had one. Ever. I used to have girls that are friends but they didn't last long and I was too dense to notice that they probably liked me. I just didn't bother to...
    Xemplefied Xemplefied 26-30, M 1 Response 18 hrs ago

    Your Response

    Cancel
    My ex was very mentally abusive to me. he had at one point hit me and my friends and family made me break up with him. I now see that it wasn't okay but I'm still in love with the...
    CopenhagenAngel427 CopenhagenAngel427 18-21, F 4 Responses 18 hrs ago

    Your Response

    Cancel
    My mother has this rude joke she makes if I don't show her something i am doing when she asks, I'm looking at "****" and "willies" and goes and tells my stepfather. She tells him...
    1lonelydaisy 1lonelydaisy 41-45 17 hrs ago

    Your Response

    Cancel
    I always know when my period comes because of the pain. It's pain that hurts but isn't at the stage where I'm thinking "I can't deal with this anymore". It's like an alarm clock...
    1lonelydaisy 1lonelydaisy 41-45 1 Response 16 hrs ago

    Your Response

    Cancel
    Boo! Did I get ya? I have never stopped. I never will stop. But if you're in this group you turned little ***** and quit, probably bowing to social pressure. Nothing can change...
    smokingrocks1 smokingrocks1 56-60, M 16 hrs ago

    Your Response

    Cancel
    So, he approached my friend and said, o really like your best friend and i have to tell her where is she, i looked up and he smiled , i went over and sat beside my friend, and he...
    FAIRYboobs FAIRYboobs 18-21, F 15 hrs ago

    Your Response

    Cancel
    My daughter is biracial. She was born very white and I thought that she would get a little darker with age, like many black and mixed babies do. She looks about the same now. I...
    Evesdaughter Evesdaughter 31-35, F 1 Response 14 hrs ago

    Your Response

    Cancel
    So before I tell the main part of my story id like to rewind a few years and give some backstory. When I was 5 years old I was molested by my neighbor. He never penetrated but a...
    Niavati23 Niavati23 18-21, F 2 Responses 13 hrs ago

    Your Response

    Cancel
    I have, me and my sister have fights with knives because we both like it and it turns us on, we play a game where we fight with knives and it's the first one to ten stabs to win...
    IWantToBeTortured IWantToBeTortured 18-21, F 12 hrs ago

    Your Response

    Cancel
    I haven't spoken to my twin in a while. Sometimes I wake up from my sleep in the morning with a random song stuck in my head which I haven't heard in years. When I play the song...
    krimsonlove krimsonlove 22-25, F 1 Response 10 hrs ago

    Your Response

    Cancel
    I wonder what it would be like, but frankly I have no time. I am not that interesting either, mostly just tired or negative. I know there should be some sort of "substance" to it...
    chairsmissing chairsmissing 22-25, F 9 hrs ago

    Your Response

    Cancel
    Just an update: so many little things have happened between us that I just builds on the electricity and vibe I feel we have. I remember my friend asked him if there was a future...
    Tigercass Tigercass 22-25, F 1 Response 7 hrs ago

    Your Response

    Cancel
    what's missing ..... I have lost that younger person who always was happy enjoying life getting out doing thing a single person should be doing before the evil VAGINITE came along...
    joophomme joophomme 46-50, M 1 Response 7 hrs ago

    Your Response

    Cancel
    I have been cheated on by 3 people (that I know of, it could be more) One was a relationship of 2 years and he had cheated on me for 5-6 months, pretty much had a new girlfriend...
    tastethiss tastethiss 22-25, F 4 Responses 6 hrs ago

    Your Response

    Cancel
    i have social anxiety, it gets the best of me most of the time. especially when im at work i have a voice in my head that constantly tells me im doing something wrong. i get sweaty...
    haileymauck haileymauck 18-21, F 3 Responses 3 hrs ago

    Your Response

    Cancel
    I have had multiple happenings in my life involving abilities. 1st one was in 9th grade, I could make a fold of paper jump up while it was sitting on the table, 2nd was when I...
    overthetop720 overthetop720 22-25, M 2 hrs ago

    Your Response

    Cancel
    Death ?! The first border to cross for those who accept the reality of the human body - it's nice to over come the mental attachment to the world around you and say " I don't fear...
    Stephenrko Stephenrko 31-35, M 2 hrs ago

    Your Response

    Cancel
    I have many problems but I guess everyone does. I don't really talk to many people so I don't have anyone to talk to about my problems. I love talking to people but people don't...
    toiletwater toiletwater 16-17, M 1 hr ago

    Your Response

    Cancel
    i miss my mommy taking care of my hair.i swear things were much easier when some shampoo and some grease was all that was needed to take care of ur hair. top that off with some...
    evasweet evasweet 22-25, F 1 hr ago

    Your Response

    Cancel
    I have so many personalities. Like one second I'm a kind hearted young man, next second I'm a cruel, psychopathic killer. But I have many more personalities than you think.
    MLGnoscoper MLGnoscoper 18-21, M 35 mins ago

    Your Response

    Cancel
    My granddaughters don't accept me because of it . They wouldn't permit me to come to the wedding with an interpreter for my profound deafness. I don't like them any more. I'm not...
    MargaretCallinan MargaretCallinan 70+, F 2 Responses 19 hrs ago

    Your Response

    Cancel
    I met a man not too long ago. He's genuine and sincere. He actually cares about my feelings and has an incredible way of understanding everything. There are people you meet in life...
    hadyourchance hadyourchance 36-40, F 10 Responses 18 hrs ago

    Your Response

    Cancel
    It was really weird, me and him were falling and there was a small gap that only one of us could fit in so he pushed me into the gap while he fell through a wooden floor... But it...