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. 13 People


    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

    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

    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
    1 Response Sep 17, 2012

    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
    1 Response Jan 3, 2012

    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
    36-40, F
    1 Response Apr 1, 2014
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