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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

    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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    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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    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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    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 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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    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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    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 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 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 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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    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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    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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    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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    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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    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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    jacquelinejones jacquelinejones 46-50 13 hrs ago

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    I was diagnosed with Aspergers Syndrome around 5 years ago. since I was diagnosed I've began to understand myself better. I actually see it as a blessing because I have became very...
    waterboy99 waterboy99 16-17, M 3 Responses 3 days ago

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    I've just recently accepted my year old diagnosis as being on the Autism Disorder Spectrum with what is usually called Asperger's. I've learned a lot about myself by accepting my...
    ExtrovertedAspie ExtrovertedAspie 31-35, M 4 days ago

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    I don't have Crohn's disease. But I am truly sorry that any of you have to go through it. My boyfriend has had it since a child. However he has been in remission for most of the...
    Sunshinemms Sunshinemms 22-25, F 1 Response 4 days ago

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    I have been told that I have cat's eyes.
    Jezebel1973 Jezebel1973 41-45, F 4 days ago

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    I've had Lyme Disease for a long time, but was only diagnosed two years ago. I also have EDS, which symptoms are a lot like Lyme. I am 23, on disability, in pain 24/7 and have so...
    alwaysfaithful13 alwaysfaithful13 22-25, F 5 days ago

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    I have end stage kidney failure. I only had one good kidney when I was born. The other was smaller and failed first. The thing is I am on dialysis for the rest of my life. Do I...
    comfi comfi 51-55, M 6 days ago

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    I was diagnosed with PTS almost 3 years ago after undergoing surgery to remove a bone spur. I still don’t have full use of my arm and still suffer pain, but have learned what...
    PDG1 PDG1 46-50 6 days ago

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    I was diagnosed with Asperger's (autism) about a year ago but I didn't accept the diagnosis because I had a lot of misunderstandings about what it meant. After continuing treatment...
    ExtrovertedAspie ExtrovertedAspie 31-35, M 1 Response a week ago

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    Recently diagnosed with horners and holmes syndrome.. after over 10 years and going to many drs about me not sweating I finally found out why.. and this added to my many other...
    baidal88 baidal88 36-40, M 1 Response a week ago

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    It really bugs me when people dismiss my or other people's struggles with a bit of whataboutery. Or even just saying things like "pull yourself together". I don't deny that there...
    usernameinneed usernameinneed 26-30, M 3 Responses a week ago

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    There's days where I forget I am autistic. Surprising isn't it. Today was not one of those days. Too many people today. Too many emotions. Too many decisions. Too many things to...
    jacquelinejones jacquelinejones 46-50 1 Response a week ago

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    I haven't really written anything in a few years, and it makes me sad, I used to love writing fiction, but I could never figure out what to write about... help please
    internetkid internetkid 18-21, F 1 Response Jul 26

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    Phew!!! Major dramas in a group I help admin on Facebook. (Hostile takeover and rescue attempts for a group of 20 000 aspies) I am going to have a busy couple of days. What with...
    jacquelinejones jacquelinejones 46-50 1 Response Jul 26

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    I've had the worst writer's block of my entire life for the past year now. Writing is my passion, but since I've developed depression I haven't been able to write for more than a...
    FayetheBrilliant FayetheBrilliant 16-17, F Jul 25

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    My son had two malrotations before they found he had Hirschsprungs Disease. The first was at birth and the second was probably around 4-5 months old. We thought we were going to...
    tilaterese tilaterese 26-30, F Jul 25

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    I was born with ischemic heart disease
    MrsButterfly90 MrsButterfly90 22-25, F Jul 25

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    OMG other people .. that have ischemic heart disease I didn't think this was possible
    MrsButterfly90 MrsButterfly90 22-25, F Jul 25

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    I do. However, I constantly talk to myself, act out scenes and think negative. It's ruining my life and it's decreasing my time to practice drawing.
    FoxFan64 FoxFan64 13-15, M 2 Responses Jul 24

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    They yell at you that you're not normal. That you always **** things up. You leave to your room, crying. You overhear them in the other room: What did we do wrong? How could we not...
    EurydiceKallos EurydiceKallos 18-21, F 8 Responses Jul 23

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    How it's going? I have been suffering Queratitis TSPK for 15 years. It's really annoying and I'm pretty upset. The only treatment that really works is corticoides FML but it...
    davor79 davor79 31-35, M Jul 23

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    It all started 2 years ago when every time I was working ( at a nursing home ) I was fainting. Everytime this happened I went to the hospital and I got told nothing was wrong with...
    klousie klousie 22-25, F Jul 21

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    Hi. I am new to this site. I am a 50-year-old female. I started getting migraines around age 30. They became chronic after a few years and have been having them chronically...
    KarenMac2 KarenMac2 46-50, F 1 Response Jul 21

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    I hate my life. There are some days when I want to run away and never come back. I have a great husband that any woman would be blessed to have. He's hardworking, loving, kind...
    BadlyBent BadlyBent 36-40, F 6 Responses Jul 20

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    Hi, I am male and retired and was diagnosed with EF in July 2014. I started treatment in August 2014 and now it is a year later and I am already much better. I hope that gives you...
    mogfitz mogfitz 66-70, M Jul 20