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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

    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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    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 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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    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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    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 22-25, M 3 Responses Jun 16

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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 22-25, 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 4 Responses Mar 28

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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

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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

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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

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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 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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    Related Experiences

    I was told I had keinbock's about 12 yrs. ago had surgery to shorten bone in my right arm. That helped with pain for about two yrs. so I stayed working but since then pain has...
    icequeen029 icequeen029 31-35, F Aug 11

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    Yesterday, something happened to me that scared the crap out of me. For more than ten years, I have had Ménière's disease. I was shopping in Target when I was suddenly hit with...
    scottdavidsmith scottdavidsmith 46-50, M 1 Response 9 hrs ago

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    I have polycystic kidney disease. The largest cyst measures 6cm in right and 5cm in left kidney. the latest scan report says that 'corticomedullary differentiation lost in with...
    aneetasree aneetasree 31-35, F 15 hrs ago

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    Anybody else agree with this? 😔 Hi. My name is Hashimoto’s. I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.
I am now...
    sarahglass sarahglass 18-21, F 5 Responses Jul 22

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    I have neurological Lyme disease and everyday is a struggle. My memory is so bad I forget where I and people, I also get really bad brain fog and have asperges since being...
    BriGrace BriGrace 13-15, F 2 Responses Jul 25

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    I actually don't know for sure if I have Sjogren's; my second appt with the rheumy isn't until the 19th. I've had horrible dry mouth, throat, eyes, etc., for a while now (3+yrs). I...
    Notasouthernbelle Notasouthernbelle 36-40, F 2 Responses Aug 6

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    Barth syndromeFewer than 200 living males are known worldwide with this disease. Symptoms vary largely between patients, from life threatening to non-existant. No patient has all...
    Uncertain153 Uncertain153 26-30, M 1 Response Jul 24

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    I had this patch of tanned skin on my stomach and my arm-pits in large blobs across my body for over a year. It was very confidence ruining, and I was scared of it spreading on to...
    xSundip xSundip 18-21, M Aug 6

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    I have had raynauds since at least 4 years old, but I didn't know what it was until about 13yrs old. This disease has been so frustrating because I feel like nobody understands it...
    allisondela allisondela 18-21, F a week ago

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    my computer's running really ******* slow and it's throwing off the entire mood of writing. Even as I'm typing now, it's lagging hardcore and i'm sick of it. I'm writing a story...
    hornewrecked hornewrecked 16-17, F 1 Response Jul 23

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    I've had depression and anxiety pretty much my whole life, leading to two hospital stays in my late teens. At that stage it was suspected to be some sort of psychosis, or...
    BJH72 BJH72 41-45, M 1 Response Jul 28

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    And it's depressing and so tiring :(
    MarvelBabe MarvelBabe 13-15, F 1 Response Aug 2

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    I was at this 12½ year wedding day anniversary today. Way to many people. Couldn't focus on anything. Too much noise. And my phone died after the first 4 hours, but I was there...
    leejoonnieoppa leejoonnieoppa 18-21, F 5 Responses Aug 2

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    I have a 7 yr old adopted daughter that I'm very concerned about. She and her twin sister were abandoned at the hospital, born 3 mos. premature, and positive for methamphetamine...
    mama27kidz mama27kidz 56-60, F Aug 5

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    I am 16 years old and got my first job in May of 2014. I'm a Server and Cashier at a restaurant. Some days when I work, I feel slow with knowing what's going on. I never had a...
    short98 short98 16-17, F a week ago

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    All my life, I’ve felt different, like I just don’t quite belong in any group that I’m a part of. Trying to fit in has led to me to trouble. I’ve drank heavily, smoked weed...
    empoweredh22 empoweredh22 22-25, M 1 Response 6 days ago

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    I am at a loss and need some help! I went to urgent care in February because I had this horribly terrible rash that itched uncontrollably and was painful. I had clusters of what...
    SweetJFowler SweetJFowler 26-30, F 1 Response 4 days ago

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    I was just diagnosed with hashimoto's my TPO is 3300 and my Tg was <5, does anyone else have these levels? I can never get warm and have a lot of joint pain. I don't do well in...
    Jung007 Jung007 31-35, M 1 day ago

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    Five different specialists have now told me I should start taking my medication now. Actually it could be six or seven but I don't want to. It isn't going to cure me.
    Teab Teab 41-45, M 2 Responses Jul 22

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    I am making a prognosis as a patient and I want to be tested for the AACh antibodies. Thymoma is abnormal growth of the thymus and is strongly correlated with MFC in the recent...
    RiderVictori RiderVictori 31-35, T Aug 9

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    I have been diagnosed with Asperger syndrome. Sometimes it just seems like it doesn't fit at all except the unsocial part as most of my routines has fallen apart well I guess this...
    Joiss Joiss 18-21, M 1 Response Aug 10

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    https://www.kickstarter.com/projects/2084036675/artistic-autistic-awareness?ref=email My Kickstarter application is finally live. I have autism and I find the preconceptions...
    TheNakedPoet TheNakedPoet 41-45, M 3 days ago

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    I need help I can't find a girl that likes me and I mange to suppres. My tics really well and you would only really know if someone told you and well I think the girls I try to get...
    Sproketsocet Sproketsocet 18-21, M 2 days ago

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    I was diagnosed at 27 due to tadpole pupil episodes. I always had a smaller pupil and droopy lid. Also a long time migraine sufferer. In the past two years, I developed new...
    telltalelemon telltalelemon 31-35, F Jul 29

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    Do any of you keep like dairy/journal
    shadowfluffy6 shadowfluffy6 18-21, F 2 Responses 6 days ago

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    Had it since fifth grade (10 years old). I remember when i went to science camp. I was the only kid who had to wake up early and go to the teachers room to take my medicine. While...
    ninjadentistinspace ninjadentistinspace 16-17, F 1 day ago

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    Two and a half years ago I was diagnosed with Ulcerative Colitis. Then a year ago it got bumped up to Crohn's Disease. It's funny I always knew something was wrong with me since I...
    Starkillera Starkillera 22-25, F 5 Responses Jul 22

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    I have had the disease since I was little, it didn't bother me much as a child. My favorite thing to do as a kid was swim. All my birthday parties were at the pool ( I didn't have...
    Iaquinto Iaquinto 22-25, M 1 Response Aug 3

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    March, 2013 I was told I had polymyositis. My Doctor said I was using 20% of my muscle. I lost my job and living on SSD. My treatments are IVIG and predisone. When I first...
    Numberplay Numberplay 46-50, F 5 days ago

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    I'm 16 old and just got the results that I was given herpes by my last sexual partner, age 24. I'm only 16 and will never be able to run from this. I feel like everyone knows. I...
    ofwkatie ofwkatie 16-17, F 4 Responses Aug 13

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    You Look Yummy :) This dream absolutely terrified me as a kid. Just thinking about this godforsaken nightmare sends huge amounts of fear crawling down my spine. I say this with...
    NFDenmark NFDenmark 16-17, M 2 Responses Jul 31

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    I was never diagnosed with BPD but I feel I do have it. I have been reading about it and after reading many of your own testimonies I am convinced this is what I have. It's been a...
    Serenity14 Serenity14 26-30, F 2 Responses Jul 22

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    But I don't have a feminine side ;A; But there's a side I have. It's called a awesome side c:< :D And sir if you think if I would ever think I would have a feminine side I don...
    DysfunctionalPiano DysfunctionalPiano 13-15, F Jul 28

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    *Tiana Jade* This girl needs no introduction. lol Seriously, she's the most amazing person i've known here. Pure hearted, a one of a kind friend that you'll surely love to have...
    DarkSoul07 DarkSoul07 22-25, F 2 Responses Aug 2

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