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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. 26 People

    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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    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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    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 31-35, F 1 Response Mar 27, 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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    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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    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 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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    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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    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 8 Responses Oct 24, 2011

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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 5 Responses Mar 28, 2014

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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 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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    Related Experiences

    I was diagnosed with Crohn's when I was 10 (In 2001), and now I'm 23. (I'll be 24 in June) It's weird knowing you've had disease for over half your life and will continue to have...
    Catherdra Catherdra 22-25, F Mar 23

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    Research on Movement Disorders! If you live in the San Francisco Bay area or Boston area, we are looking for people to participate in a research study on the topic of living with...
    tovalynn tovalynn 26-30, F 1 Response 3 days ago

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    i am wondering if anyone has these features with their pd. 1. when i get freezing and i cant lift my feet to walk across a room i can still walk up stairs. 2. when i freeze and...
    whatchimecallit whatchimecallit 56-60, F Mar 29

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    March 21, 2015 The dream I had last night was far too accurate a metaphor for my life than I'm comfortable dealing with. It was long and drawn out, with many different twists and...
    ncbarr ncbarr 31-35, F Mar 21

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    I have tspk for almost 3 years now and been telling to use fml steroid 4 times a day with cyclosporine , everytime when we try to stop steroid. I got flare up and the bad pain...
    naassa naassa 26-30, F Mar 28

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    I'm currently in the process of analyzing some videos for my psychology class. The videos are the videos of dysfunctional families with young children that keep screaming for...
    RichardAndon RichardAndon 22-25, M 1 Response a week ago

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    So, I went to see my doctor today and he suggested that I might have Asperger's syndrome. I don't really know much about it, so was hoping someone on here could enlighten me...
    Ambernonymous Ambernonymous 18-21, F 1 day ago

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    Just recently diagnosed with degenerative disc disease in L4; L5 :( i was a very active person,played basketball and gym mostly everyday. Im told not to engage in any high impact...
    giabaoc giabaoc 18-21, F 1 Response Apr 5

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    All through my short life I have experienced the troubles of being an outcast, being told to simply "get involved" but that's not at all easy. Well not for me anyway. I can do...
    thedimone thedimone 13-15, F 3 Responses Mar 26

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    It creeps up on me at the worst times, like when I have two essays due this week. Like when I'm awake in the early morning hours with a migraine, and a lump in my throat, like I...
    blindangel92 blindangel92 22-25, F Mar 19

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    After getting through your first episode of writers block there's a sense of being relieved. Now thoughts are just flowing and my novel is going well. A lot of plot editing though...
    IllusionaryGentleman39 IllusionaryGentleman39 18-21, M Mar 25

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    I never really understood why I acted the way I acted and said some of the things I said until I was diagnosed . I never knew why most of my relationships never worked out and why...
    JoshRobin JoshRobin 18-21, M 4 Responses Mar 29

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    I recently realised that I had never been able to feel what others feel. i feel bad for people, but I can't put myself in their shoes... when I see someone crying I generally...
    loafemon1 loafemon1 18-21, F 2 Responses Mar 30

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    Hi there Aspies! I'm currently working on a short presentation about MDD (Maladaptive Daydreaming Disorder) and I've came to the point where I have to describe what are the usual...
    RichardAndon RichardAndon 22-25, M 2 Responses Apr 1

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    One of the struggles i have found myself having is speaking with other people i have the words i want to say but they won't come out. I want to meet a person because she has been...
    Autumnflowers Autumnflowers 18-21, F 6 Responses Apr 1

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    I have aspergers and I thought meeting other people who have it would help me cope but it hasn't . It's like I can't even relate to those people who have it because were too alike...
    JoshRobin JoshRobin 18-21, M 2 Responses Apr 5

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    In my late teen's & 20's I used to have to tell myself "You're more of a woman than she'll ever be!" just to keep sane. Enjoying your private happiness in your desire (pretending...
    1unhappyboy 1unhappyboy 46-50 1 Response Apr 10

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    and I was wondering how else did? What are some tics you have and how do you manage them?
    zodiac1888 zodiac1888 18-21, M Mar 20

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    Hi all im so happy that i found this app with all these people sharing their storys with the same problem. I life in switzerland and it first startet about 2 years ago. Then it...
    Sonnenanbeterin Sonnenanbeterin 26-30, F 1 Response Mar 21

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    For as long as I can remember I had felt....a little different than others. I didn't care about most things. I didn't want or need much social activities. I had, and still have, a...
    secretlyhonest1 secretlyhonest1 22-25, M 3 Responses Mar 28

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    I am starting to branch out. To be honest, it doesn't have to be over night, but very gradual. I used to think remaining silent and unnoticed would be better for me, but then you...
    LeaderOfThePack LeaderOfThePack 13-15, M 2 Responses 5 days ago

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    Ever since I have been diagnosed with Aspergers my parents have always said no i dont. However, they really dont know the half of it. I know i have it mild but i still have it and...
    internationalkoala internationalkoala 18-21, F 6 Responses 1 day ago

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    This is true, one thing about it is an immense obsession with limited things, I was diagnosed a LONG time ago, most likely after preschool. My obsession is mental disorders, Two...
    AnonWesker AnonWesker 13-15, M 3 Responses Mar 19

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    my life has always been hard since the day i was born.
    dacosta4949 dacosta4949 22-25, M 1 Response 5 days ago

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    Dr: "I have some bad news. You have cancer. But I'm afraid that's not all...you also have Alzheimer's Disease. Patient: "Oh thank God, I thought I had cancer."
    biggunsatx biggunsatx 41-45, M 10 Responses Mar 28

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    I have congenital cervical stenosis (more about lumbar spine later) with severe degenerative disc disease. Saw a Neurosurgeon Monday and he says I need surgery. Problem is, I have...
    VixBux VixBux 56-60, F 1 Response Mar 31

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    I know this is long.and ramble as my head isn't doing well today, but please read. I hope it doesn't offend. I'm sorry... I just really need input or someone to tell me I'm bad. I...
    ChantelSurvived ChantelSurvived 22-25, F 5 Responses Apr 4

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    Always have. What's scary are the ones that were like previews of the next few days. The setting is usually off. Two in particular stand out. The first I was driving to school...
    mellymel22 mellymel22 31-35, F 2 Responses Mar 29

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