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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. 28 People

    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

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    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 22-25, F 1 day ago

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    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

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    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

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    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

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    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

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    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

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    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

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    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 31-35, F 1 Response Jan 30, 2014

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    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

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    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

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    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

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    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

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    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 6 Responses Oct 15, 2012

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    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

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    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 3 Responses Jun 16, 2014

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    Related Experiences

    This is the first one I've written like this. As a draft, but to be displayed in public to gain views and support. So here goes. I'm fed up. Truth be told, I really truly am. Our...
    cloudsoflife cloudsoflife 26-30, M 1 Response 3 hrs ago

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    We have always been hyper careful about contraception, and would check the condom between positions and check if we needed lube (because it tends to come off if there's too much...
    Kira9898 Kira9898 18-21 8 hrs ago

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    It pertains to parenting after suffering abuse. :/ My daughter is a little over 2 and a half now, and so it's hard for me to get information from her except through what she says...
    somebodylovely somebodylovely 18-21, F 1 Response 8 hrs ago

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    I'm really not sure what to do. My daughter is a little over 2 and a half now, and so it's hard for me to get information from her except through what she says of her own...
    somebodylovely somebodylovely 18-21, F 9 hrs ago

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    Was looking at a bug. Never remembered that type. Some are neat. Until they bite. Or are linked to diseases.
    Converted Converted 46-50, M 13 hrs ago

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    Life is rarely what we expect it to be, and in the span of a year I went from having almost everything I ever wanted and being well on my way to reaching several of my life goals...
    ladydavia ladydavia 26-30, F 16 hrs ago

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    All I can say is thank God for the theatre. My parents signed me up for an amateur theatre group when I was 11; in hindsight, they may have done it because of my Asperger's (I was...
    heyitsgarrett heyitsgarrett 22-25, M 2 Responses 18 hrs ago

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    I was diagnosed a few months ago and I had a really hard time dealing with it and I still do. I feel like no one cares that I have this disease because it's not cancer, so I won't...
    Haley145 Haley145 13-15, F 5 Responses 3 days ago

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    The wealthy hoard And keep the poor in poverty. And keep society from improving Which makes earth sick But earth may survive them Or explode to remove them Like some...
    Converted Converted 46-50, M 4 days ago

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    My grandma had Alzheimer's disease before I was born then passed away when I was in high school. My dad always tells me that she's a strong woman and if she didn't have it, she...
    Roshiela Roshiela 18-21, F 1 Response 5 days ago

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    I was the primary caregiver for my wife with dementia/Alzheimer for the past nine years. She was 64 years old when I was no longer able to take care of her. I hired a number of...
    newtonpark newtonpark 61-65, M 5 Responses 5 days ago

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    I look on here and am deeply saddened by the number of people who want to kill themselves. Many at such a young age, when they have not even begun to live their lives. They get in...
    GraceIsMine GraceIsMine 66-70, F 4 Responses 6 days ago

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    Im 13 almost 14 in 9th grade and I've had Crohns for 4 years now. But I've only been diagnosed with it about 4 months ago. I've been suffering with it without knowing that it was...
    Poptart020 Poptart020 13-15, F 1 Response 6 days ago

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    Could be me. Need to schedule an appointment and get assessed.
    Western9 Western9 36-40, M a week ago

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    I don't mind Aspergers. It has benefited my intelligence greatly, and I have a small group of friends who understand that I may not be the most entertaining or talkative person in...
    XenonVirus XenonVirus 13-15, M a week ago

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    Because of my Crohn's, eating is incredibly difficult sometimes because I know after I eat whatever it is I'm going to end up on the toilet in a few minutes. It's especially...
    Catherdra Catherdra 22-25, F a week ago

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    Want to know me better? Autism is funny. And terrifying. (Just like EP really) Just now, as I sat reading a short passage of keywords about autism titled 'Am I OKay' I did my...
    jacquelinejones jacquelinejones 46-50 3 Responses Jun 28

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    I was diagnosed from my kidney doc after a Biopsy that I had sjogrens, but my Rhuemetologist says no ( I don't like him and am changing to a new one) I already have kidney disease...
    katsass katsass 46-50, F Jun 27

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    Here's the picture of the lump sticking out of my knee. Unfortunately I will have this lump for the rest of my life :(
    HMC17 HMC17 13-15, M 7 Responses Jun 26

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    I have Osgood-Schlatter Disease and I hate it. It's painful, I have a permanent lump under my knee and it restricts the amount of exercise I do (which is a massive down point for...
    HMC17 HMC17 13-15, M 5 Responses Jun 26

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    Please read with care, and take steps to keep yourself feeling safe and secure, if reading about body image and associated topics are triggering for you. I’m your stereotypical...
    ChocolateCurvesModel ChocolateCurvesModel 31-35, F Jun 26

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    Write about your experiencePlease read with care, and take steps to keep yourself feeling safe and secure, if reading about body image and associated topics are triggering for you...
    ChocolateCurvesModel ChocolateCurvesModel 31-35, F 1 Response Jun 26

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    I'm in love with someone I'll never have... It's the saddest thing in the world to me...
    boggbinny boggbinny 13-15, M 3 Responses Jun 26

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    Hi all, I was diagnosed with bilateral (both eyes) scleritis last November 2014 and practically every day since then has been misery. I'm not new to eye disease because I also...
    polarsuds polarsuds 46-50, F Jun 25

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    I was just diagnosed with Hashimoto's and hypothyroidism this month after many years of symptoms. I wonder if I'll ever feel like I have control of my body again. It has made me so...
    ambiblue ambiblue 22-25, F Jun 25

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    I want to write, but these pictures have no words.
    notarikon notarikon 16-17 Jun 24

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    I was diagnosed with Hashimoto's March 2015. My identical twin was diagnosed 20 years ago. She can’t remember her exact symptoms that led to her diagnosis after two years and...
    MinnieT MinnieT 36-40, F 2 Responses Jun 24

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