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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. 29 People

    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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    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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    Hi I am Madison, I am 16 years old

    and developed Darier’s disease when I was 2. The condition started with just a few bumps around my mouth, and by the time I was about eight I had scales around my mouth, around my nose, on my cheeks, on the rims of my ears, on my arms, and bumps on my feet, hands, and in...
    Maddie314 Maddie314 16-17, F Jul 21

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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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    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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    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 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 Jul 6

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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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    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

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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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    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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    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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    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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    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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    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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    Related Experiences

    Always. I have to keep myself busy and entertained so my thoughts don't get to me. Adrenaline has been bothering me for a while, but it's the good kind. It's because im trying so...
    anonamanda001 anonamanda001 18-21, F 34 mins ago

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    I really do hate myself sometimes. I feel like I'm intentionally being a horrible person and it's killing me. I'm horribly mean to my family members but super nice to others.. I...
    PandaVibes PandaVibes 16-17, M 37 mins ago

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    I feel very immature, unworthy and insecure with relationships (often) and along with that I feel like my parents were my safety/security until they divorced. Now I look for...
    Clatterwithoutlove Clatterwithoutlove 26-30 3 Responses 49 mins ago

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    I always considered myself as a man. Except for one thing, I wanted to have women's breasts. 11 months ago I came across Transfemme resource. I decided to try this product for a...
    Orlan89 Orlan89 26-30, M 2 Responses 20 hrs ago

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    Only my friends can see mine as there're xxx rated :)
    Morninglory69 Morninglory69 26-30, M 1 day ago

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    I have Asperger's syndrome and Selective mutism. I do talk but sometimes my voice cuts off and I am unable to, I can't explain this but it can be quite a hinderance. I feel that I...
    Randompi Randompi 13-15, F 1 Response 2 days ago

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    which means I actually don't have it. ppl who have schizophrenia don't "think" they have it. They don't even know they have it! so, at least I can distinguish my paranoid delusions...
    StreetgirlnamedDesire504 StreetgirlnamedDesire504 36-40 2 days ago

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    I am 49 and was originally diagnosed with keinbochs disease in my non-dominant hand about 15 years ago. I was diagnosed when I was in stage II. Too late to try any bone saving...
    kbjunkie kbjunkie 46-50, F 2 days ago

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    please join gitelman/bartter buddies on fb. we have a great support system
    lilmomma1411 lilmomma1411 26-30 2 days ago

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    I doubt I have Fibromyalgia, I have been suffering from migraine since childhood.. I always feel tired, fatigue and dizzy. The tiring feeling is always with me and it increased...
    dare86 dare86 26-30, M 4 days ago

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    I think. Thirty years I have been living my life believing I have an autoimmune disease called scleroderma. Along with hypothyroidism, which also has been with me for 30 years...
    lethalea lethalea 46-50, F 4 days ago

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    It's been it's been about 8 years now that I've had lymes. It's been hell. What more is there to say?
    0210love 0210love 18-21, F 4 days ago

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    I fell in love... and just after got sores.... I got extremely high fevers and pain as well. but with this all being said I'm still waiting for my test results praying to God that...
    nomorepain898 nomorepain898 16-17, F 1 Response 5 days ago

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    It's really amazing that am cured of HERPES by a herbal medication. Oh is by this time last year I start feeling bad about my life, I feel pain everyday of my life but am very...
    TEGA32 TEGA32 26-30 3 Responses 5 days ago

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    Yes I have. It's easier to talk through there. Send me a message if you want my id. ✌ Girls only.
    nicegirl96 nicegirl96 18-21, F 6 Responses 5 days ago

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    I am 23 years old and a week ago it was confirmed that I have ankylosing spondylitis.... My WHOLE life it's always been a possibility, my father has it and over his 50 years of...
    AlRoberts AlRoberts 22-25, F 6 days ago

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    I was just recently diagnosed with fap - gardeners syndrome .. It's very scary at 17 having to deal with this , and since it is as rare as it is I have no one to share it with or...
    Escapeyourthoughts32 Escapeyourthoughts32 18-21 2 Responses 6 days ago

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    How ironic, lupus is known as a woman's disease. 90% of all patients are women. 70 to 80% are black and ethic groups. And 20% are caucasion women. And 10% are male with the same...
    victoriasize6 victoriasize6 51-55, M a week ago

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    I considered posting this in an eating disorder category. But I really don't want to call it that. It feels like a bad word or disease. But I've struggled with this since I was...
    DeIuxedEdition DeIuxedEdition 18-21, F 1 Response a week ago

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    I have so much ambition, yet so little energy to complete a task. I'm always so tired, or spaced out.
    PoshPoet PoshPoet 22-25, F Aug 24

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    The doctors have diagnosed me with Spino Cerebellar Ataxia type 14. This means nothing. I don't trust the diagnosis. You see, I am 45 and have seen too many doctors for me to even...
    NMDewey NMDewey 41-45, M 1 Response Aug 24

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    I have just recently began the paleo diet in hopes to curb my pcos. so far on this journey, prior to the paleo diet change, I have lost 50 pounds from regular diet and exercise but...
    11Disasterpiece11 11Disasterpiece11 22-25, F Aug 22

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    So I contracted hepres about 2 yrs ago from an ex boyfriend who had it and didn't tell me. I actually found out from someone else he was seeing at the same time. I haven't...
    luethel luethel 22-25, F 2 Responses Aug 22

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    I was diagnosed with DM in 2009 along with Celiac's disease, I guess I didn't realize what this disease was or how serious it was, at the time the Celiac's was my bigger concern...
    Jill2006 Jill2006 51-55, F Aug 21

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    Last month, after a break up, moving and a promotion, I flared. My goiter was so big I couldn't talk. My joints were sore, I gained 10lbs of water weight... I also had the stomach...
    PoshPoet PoshPoet 22-25, F 1 Response Aug 21

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