I Have Darier's Disease

A Darier's Disease anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Darier's Disease. You're not alone. 32 People

    Darier's Disease

    Hi, I'm Gaby and i'm 17. I was diagnosed with Darier's Disease about a year ago I am still struggling to come to terms with it. It's a hard disease to have, especially being a teenage girl.I would love to meet other people who have DD, especially people around my age. I don't...
    Gaby17 Gaby17
    16-17
    9 Responses Oct 24, 2011

    My name is Joss. I am a 25 year old male

    and I have dariers disease. I would love to chat to others who share the same experiences I do. I have tried various treatments but it is really the social aspect that I struggle with. Any advice?
    jossfen jossfen
    26-30, M
    4 Responses Jun 16, 2014

    Darier'S Experiment

    In quotes below is pretty much what I put as an intro in the MDJunction Website rather than re-typing the whole thing in this site. However, I am trying a Gluten / Wheat free diet to see if that has any positive affect on the DD. I just wanted to let others with DD to be aware of...
    ASK626 ASK626
    41-45
    Feb 22, 2013

    Hi I have just been diagnosed.

    A bit shocked really. I have late onset (I'm 45) but it appears to be quite aggressive. My dermatologist wants me to take isotretonin . (Accutane). I am to start soon - but i'd really love to hear from you guys if you would recommend that from your own experiences? Are those...
    Obird Obird
    46-50, F
    2 Responses Oct 8, 2015

    DD Treatment Re. 46 Years Of Darier's So Far

    This Dariers is always tagged as hereditary. (See treatment Accutane and Light Therapy notes below). This didn't seem to be the case for me. Doctors will say relatives could have had a VERY mild case~ but it doesn't matter. Best decision I made is to use Accutane (at 40mg a week...
    Sonbeam Sonbeam
    66-70, F
    Nov 9, 2013

    My daughter is currently in the hospital with a

    rash, and disorientation. The biopsy confirmed Darier's Disease. Will her thought process be cleared once the rash is under control?
    tbackus8763 tbackus8763
    51-55, F
    1 Response Oct 11, 2015

    In My Ears

    Help I have this in my ears and it is all inflamed have gone to the doc x3 all they recommend is antiboctic drops
    Johannsena Johannsena
    31-35, F
    Aug 28, 2013

    I was first diagnosed

    when I was about 10 and I am now almost 35. I have been treated with many different forms of both topical ointments and oral steroids over the years. Currently, it is at it's worst! I had a flare up begin last March and have had homecare coming every day since April 19th of...
    RizzB RizzB
    36-40, F
    1 Response Mar 27, 2014

    Its my daughter that has Dariers,

    inherited from her dad she is now 12 but was showing symptoms at 2!! she has topical ointments and washes to use but obviously its v hard for her to cope with. School is a nightmare and she has now taken to behaving terribly at school and is always in trouble. Does anyone have...
    exhaustedx10 exhaustedx10
    41-45, F
    6 Responses Mar 28, 2014

    I Wish I Didn'T Have It

    I've had Darier's for 58 years. I've been on every medication, every treatment from Mutton Tallow to Accutane to Tegison which was illegal to prescribe in the U.S. at the time(had a friend at Hoffman-La Roche in Germany who sent it to me). Every course of therapy just short of...
    Trollie Trollie
    61-65, F
    1 Response Mar 30, 2013

    Possibly Dairier's Disease Or Rare Form Of ???

    i am sherry i am just now 40 and since june of 2011 i began this harsh struggle of this rash and lesions, completely raw in places and the foul odor was imbarassing,i have lost a long time job due to this disease my emotions are unexplainable and my mentality has been effected...
    livinbyfaith livinbyfaith
    36-40
    7 Responses Oct 15, 2012

    40+ Years

    Hello, My Darier's presented when I was about 13 or so. Mild case in comparison to my mom and brother. My other 2 siblings were not affected. I have two children, one with and one without. I will share a bunch more at a later date but really got on here hoping that there is a...
    laklaura laklaura
    51-55, F
    1 Response Sep 10, 2013

    my name is murtada , im from saudi arabia 29

    years old ,, i need someone to help me about darier's , because now more than 15 years I have it ,, i use medicine but noting deferent
    murtada1986 murtada1986
    26-30, M
    Jun 26, 2015

    Linear Darier's

    I don't have much a story, I have had this disease since childhood, I always thought it was psoriasis. I was diagnosed about two weeks ago after a biopsy. I don't know my father and my mother doesn't have it, therefore the conclusions are that I most likely got it from him...
    MrsCraig MrsCraig
    26-30, F
    Nov 21, 2013

    I am a 46 year old female

    and have had Darier's disease since I was 33 years old. According to my dermatologists my condition is not too severe however I am very self-conscious about the red/brown marks on my chest, arms,back, and legs. I have found several things that help: - Topical retinoid Tretinoin...
    texaslilly texaslilly
    46-50, F
    1 Response Jan 20, 2014

    I started developing Darier's Disease at the

    age of 7, but wasn't diagnosed til the age of 12, I am now 34. My dad, one sister, 2 of my uncles, and 2 of my sister's children have it, I have 2 kids, but they haven't shown any signs of it. Compared to my sister, I have a mild case and she has a severe case(boils, odor)
    vivlee5 vivlee5
    36-40, F
    1 Response Jan 30, 2014

    I Too Have Dariers And So Have My Daughters

    Hi all I was diagnosed when i was forty with dariers disease I never heard of this disease so it was a shock. I suffered with my skin from the age of 17 doctors thinking it was all sorts of other conditions. When I went to a dermatologist and had biopsy's it was then confirmed it...
    aileenann aileenann
    46-50
    3 Responses Jun 20, 2013

    I was diagnosed with Dariers Disease

    when I was 27, and 5 years later I still can't come to terms with it. I'm the first in my family and I have the linear disorder - it affects the entire right side of my body. I've gone from having compliments for my perfect skin and complexion, to covering up and feeling...
    Sglodion Sglodion
    26-30, F
    1 Response Jul 6, 2015

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