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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. 32 People

    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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    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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    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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    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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    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

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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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    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 1 Response Oct 8, 2015

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    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 Oct 11, 2015

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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 26-30, F Jul 6, 2015

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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 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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    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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    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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    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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    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

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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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    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

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    Related Experiences

    The last 2 1/2 months of my dad's life were miserable. I can't get the images out of my mind. I dream about him and see him in his mental anguish that he was in. Alzheimer's...
    strawberyblond strawberyblond 70+, F 2 hrs ago

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    I've been sick now for almost a year. I'm so so so tired of being sick. I think this past year has aged me ten or more. Without any kind of warning or any trigger that I know of...
    thatonewoman thatonewoman 31-35, F 2 Responses 8 hrs ago

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    So with the new 'Reboot' being so polarizing for the fandom [and for a lot of legitimate reasons] I thought perhaps there could be a TV cartoon set in the continuity of 'The Real...
    FluttershyLabeouf FluttershyLabeouf 18-21, M 1 Response 10 hrs ago

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    After thinking I was just tired and stressed from moving and selling my previous home and turning completely yellow (eyes and skin), I went to the doctor. I was hospitalized after...
    Zomar323 Zomar323 46-50, F 13 hrs ago

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    I'm a virgin so of course I don't have a sexually transmitted disease
    LonelyGuy450 LonelyGuy450 16-17, M 16 hrs ago

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    I myself, have no clue what to do with my life. I finished year 12 last year and even then, whenever a peer would ask me questions like "what do you want to study in university...
    breesworld breesworld 16-17, F 1 Response 16 hrs ago

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    I am so happy and grateful that I have a wonderful sense of calm with a smile so big it touches my ears while having tears of joy and a heart so full of love it feels like it's...
    Nocloudshere Nocloudshere 31-35 2 Responses 23 hrs ago

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    Ironically, I can write a lot about not being able to write anything. But yeah...I really want to write, and yet I find my mind completely blank when I start to write anything...
    curiouscallipso curiouscallipso 22-25, F 1 day ago

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    Chronic Obstructive Pulmonary Disease...the beginning stages of Emphysema.
    melbdad melbdad 51-55, M 2 days ago

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    I am so happy with myself from being pretty chunky I dropped down to a size 8 yes I know many would say I'm still fat but hey. It's not weight I have it's the hips and the junk in...
    Morenita79 Morenita79 36-40, F 1 Response 2 days ago

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    What's gonna determine whether or not I can get out of bed and go to school Monday, is the infectious diseases doctor has to come in, look and examine my hand. Cause I have egsama...
    CreepypastaFan2016 CreepypastaFan2016 16-17, F 1 Response 4 days ago

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    I have tried to post these thoughts before, but they mysteriously disappeared in a few hours, so let me try again. I get fed up with conservative politicians hi-jacking the Bible...
    carlton52 carlton52 61-65, M 2 Responses 5 days ago

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    When people try to seal their brokenness by trying to break another person seem to not realise all they are doing is having a temporary high. Like treating a symptom but not the...
    Idolovemostofyourthoughts Idolovemostofyourthoughts 26-30, F 2 Responses 5 days ago

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    My son is 4 yrs old and was diagnosed with HD at 17 days old. He had his first surgery at 21 days old and gotten a colostomy bag. He had a reversal at four months, didn't work so...
    Rymae87 Rymae87 26-30, F 6 days ago

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    I've had crohns since I was 15. It slowly became a bigger issue in my lay 20's. I ended up with 3 weeks in the hospital, an iliostomy and they removed a significant amount of small...
    deleted deleted 26-30 1 Response 6 days ago

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    Assume, presume exclude the truth. Teeter totter bicker bother. Life is so wondrous and full of fodder. As the garden grown the plants unfold into trees and bushes bushels of...
    Everyheartbeat Everyheartbeat 26-30 Feb 2

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    Hi, I stumbled upon this site while searching ( as iv done thousands of times, for yeeears now) in hopes that I can find some magical supplement to cure the living hell that my...
    Hopelesslyfallen Hopelesslyfallen 31-35, F Feb 1

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    Stage 4 since 2014. Dxd in 2012 with stage 2-3. I've done a year and a half of Lupron, a year of Progesterone, 1 D&C, two laps, two hysteroscopys, 1 cystoscopy, a $400,000 DaVinci...
    apresm0i apresm0i 26-30, F 2 Responses Feb 1

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    I have a rare disease so I wear a medical ID necklace I never take off.
    MandyR34 MandyR34 22-25, F 1 Response Jan 30

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    Your wish means somebody else's downfall. Let's see; I wish all illnesses and diseases will go away. HOORAY! Science and medical no longer required. The doctors at medical centres...
    Sazzio Sazzio 26-30, M Jan 30

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    She threw herself at me. I took things slowly. After a few months, we were official. I was a part of her family's dinners. She was "the happiest they've ever seen her." She treated...
    standardmale standardmale 26-30, M 2 Responses Jan 30

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    the best they've explained it and from the x-rays it shows that L4 and L5 are too big for the rest of my spine. doc calls it an anomaly. what it means to me is pain and a lot of...
    girlonpause girlonpause 36-40, F 1 Response Jan 29

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    Became a member on this site with the little gleam of hope that I still have. My story is very in depth, long, and to be blunt, f!&%>d up. I plan to share my story, and I hope my...
    Hopelesslyfallen Hopelesslyfallen 31-35, F Jan 29

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    I have read a lot of these stories now and and everything seems so gloomy! It cant be all horrible, Im 26 now and was born with very mild Spina Bifida Occulta. Apparently Springles...
    ShanCourt ShanCourt 22-25, F Jan 29

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