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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

    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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    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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    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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    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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    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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    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 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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    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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    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 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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    Related Experiences

    One day my wrist just started to ache and then it never stopped. I never had any injury or sprain to the wrist so I didn't think much of it at the time. I ignored it for a few...
    Nimy56 Nimy56 22-25, F May 25

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    Dear Crohn's Disease, I wish you would stop hurting me. You make me feel weak, and prevent me from participating in activities. I want to be stronger than you but it's hard. You...
    SpaceGlitch SpaceGlitch 16-17, F 1 Response May 3

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    I had Grovers years ago while I was on synthroid for thyroid. I told my doc I would FIND A CURE! He assured me I would not. I looked for well over a year picturing in my mind that...
    Dianne01 Dianne01 56-60 1 hr ago

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    Yesterday went to a near by university and met some college students, their major is Physical Therapy for people with Parkinson's. I enjoyed meeting these young students. They...
    rjk01 rjk01 66-70, M May 21

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    Finally a diagnosis of chronic pain in the thoracic region and great difficulty swallowing, have bone spurs throughout my entire spinal region and need knee replacements etc...
    hellybell hellybell 46-50 1 Response May 11

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    I was diagnosed with Kienbock's last month. I will be seeing my hand/wrist specialist on the 9th of June to find out what stage I am in. My kd pain started when I was about 5 or 6...
    Pumpkin1421 Pumpkin1421 26-30, F 6 days ago

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    After meeting with the college students, went back home. Last night I took the wrong pills for night time. I have pill containers labeled by time of day. Still managed to get...
    rjk01 rjk01 66-70, M 1 Response May 21

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    Anyone like to share their experience post transsphenoidal surgery? I'm at day 10.
    DeeKay2169 DeeKay2169 26-30, F May 10

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    I have Asperger's Syndrome which is a high functioning form of autism. I got diagnosed at 7, but my parents told me I was BORN with it. I guess I was born abnormal after all. I...
    maialove maialove 22-25, F 1 Response May 25

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    I have this condition. This chronic sickness. It’s called the dreamers disease because I dream. Dream of a an illusory world that resides only in my imagination. I am a writer...
    thesontheheir thesontheheir 26-30, M May 21

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    The Spoon Theory... An excellent read for anyone dealing with a chronic disease or diseases. Or a family member or friend who suffers from chronic illness. http://www...
    PiercedBBW PiercedBBW 26-30, F 4 days ago

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    I have yet to be properly diagnosed, but my mom and I have researched it, and one of her friends has a daughter with it, and all of the symptoms match me so well, looking at a list...
    ADawnS ADawnS 18-21, F 2 hrs ago

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    God why are people with autism spectrum disorders so retarded and sensitive? They need to buck up! Okay so two weeks ago my other autistic friend spend the night with me because I...
    JoyJoy7 JoyJoy7 22-25, F 7 Responses May 11

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    I don't understand eye contact or facial expression I remember Making friends with someone once we talked for a while and eventually the topic somehow went into disability's, When...
    Autumnflowers Autumnflowers 18-21, F 8 Responses May 13

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    It's more of a tourette's of the mind for me. If I'm around certain people, all these unwanted thoughts come to my mind but I never actually vocalize them.
    zarpanzur zarpanzur 26-30, M 6 days ago

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    I often use my imagination in a way to create or recreate the reality to better understand some situations or to comfort my insecurities when needed. Sometimes I find myself into...
    RichardAndon RichardAndon 22-25, M May 16

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    It's the mild variant which just means people don't realize that I actually have a problem and thus hate me. It causes a lot of problems including with social interaction, and...
    omutsukimi omutsukimi 18-21, M 3 Responses May 19

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    Hard decisions are never easy whether you have a condition or not. You have to do what is best for you even if it hurts someone else. When you really care about someone often the...
    Sakaratte Sakaratte 26-30, M May 3

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    I do. However, I have no talent in anything whatsoever, I waste a lot of time and not to mention I wasted my life pretending to be someone I wasn't and never will be. I have a lot...
    FoxFan64 FoxFan64 13-15, M 2 Responses May 5

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    I have this condition and right now I'm in a lot of pain with it gets me down so much
    noelaine noelaine 41-45, F May 7

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    Nowadays I blend in with society pretty well, but in kinder garden my symptoms were showing a lot and I got humiliated over and over by the sixth graders telling me "you should do...
    ortwin ortwin 16-17, M 1 Response May 17

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    Hi everybody :-), At the beginning I was told I have TSPK. That was two years ago. There were symptoms as the same as for TSPK. A cornea specialist in Lucern CH told me today, two...
    Sonnenanbeterin Sonnenanbeterin 26-30, F May 20

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    I'm writing something like a scary fiction but I can't figure out what to do with me characters next. *leans away from the story* Oh, well. I'm sure something inspirational will...
    Darkenrow Darkenrow 18-21, M May 3

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    i always feel anxious before a presentation or when randomely asked to read or speak in front of many people, my voice starts shaking, my hands trembling and everyone starts to...
    sarahbj6 sarahbj6 22-25, F 2 Responses a week ago

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    I do not have an incurable disease. However, somebody very close to me who I love dearly was just diagnosed with a bloodborne sickness. I don't look at this person any different...
    1MoreSilverDollar 1MoreSilverDollar 22-25, F 1 Response 4 hrs ago

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    After more than a decade of eating poorly and being sedentary, I have developed heart disease. Currently, I'm trying to reverse it nutritionally and will have to start exercising...
    zarpanzur zarpanzur 26-30, M May 5

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    It started in December and we are still trying to figure out what's wrong but my doctor said it's a non-classic cause of Crohn's disease. I have ulcers in my stomach, intestines...
    stuff950 stuff950 22-25, F May 7

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    Diagnosed with with Genital Herpes in September. Slept with only two girls this year, went to the hospital regarding something last week, and was diagnosed with genital warts...
    Bodhichitta Bodhichitta 26-30, M 3 Responses May 6

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    Ok so I read my palms for fun but basically I have really weird palms ...because if u can see my head and heart lines are connected...I just have one line instead of 2... I looked...
    ERMAHGERD1 ERMAHGERD1 22-25, F 3 Responses May 10