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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 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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    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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    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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    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 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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    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 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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    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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    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 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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    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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    Related Experiences

    PAN (Patient Access Network) Foundation Launches Financial Assistance for Patients Living with Parkinson’s Disease: http://www.panfoundation.org/news-article-list/365-pan...
    LifeinWoodinville LifeinWoodinville 41-45, M 1 Response Feb 23

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    Well I thought, for some silly reason, that I was the only person with Parkinson's Disease that had the horrible morning toes problem. Turns out it's more common then I thought...
    LifeinWoodinville LifeinWoodinville 41-45, M 2 Responses Feb 6

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    Iv had Crohn's pretty much my entire life. I had my whole large bowel out 3 yrs ago, Stoma for a year (thank god it was reversible) but since then I have suffered agonising fatigue...
    strawberryblonde89 strawberryblonde89 26-30, F 2 Responses Feb 9

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    I was diagnosed at 9 (now I'm 14). It can be really hard but what makes it soo much easier for me is camp oasis (summer camp for people with Crohn's and colitis)...ITS SO AMAZING...
    ellajade ellajade 13-15, F Feb 21

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    Chrohn's is the worst!! These have been the roughest 2 years of my life so far. Words can not explain my frustration with this. All I want to know is what the hell can I eat...
    beYOUtifulxo beYOUtifulxo 26-30, F 3 Responses 4 days ago

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    hi guys , 4 months ago i started getting pain from left wrist , i workout alot so i thought it was from training but after 2 week and pain was still there , i went to doctor and...
    Al1r3zA Al1r3zA 18-21, M 1 Response Feb 20

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    I've had it since I was 9 years old
    ellajade ellajade 13-15, F Feb 21

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    I have known for 3 yrs that I have Hashimoto's but I believe I have had it for 25 yrs. It started during my 2nd pregnancy. My Dr over the years kept treating the symptoms with...
    physio56 physio56 56-60, F 2 days ago

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    its with me daily has been since I was born - I am different because of it - no one can see it or notice it- its my invisible disease. I look healthy active happy and generally...
    blonde10 blonde10 36-40, F 2 Responses 3 days ago

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    I have known since 22 that I have this disease. High BP has been my only symptom. Now I feel as though my torso is crowded. Breathing can be difficult especially after eating...
    panoon12 panoon12 31-35, F 1 Response a week ago

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    I tell you where it's from Africa That's from where Ebola comes West Side It hides in the suitcase 2 days later It lands in USA I get it from my girlfriend & give it to my dad I...
    TheRoni3456 TheRoni3456 13-15, F 1 Response Feb 5

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    I'm a 21 year old male, have had since was 18 but all the doctors said it was eczema for the longest time, until I saw a dermatologist about the lesion on my lip. Every person I...
    Quiet21 Quiet21 18-21, M Feb 12

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    I've just started training full time at a circus school in Australia (NICA), and am struggling every day to keep up and to not feel sick. Almost every day I have to sit down for a...
    krazykrazne krazykrazne 22-25, F Feb 18

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    As an Aspie, I get very tired having to socialize and talk to people. I'm often accused of being aloof, standoffish, or downright rude. It's not my intention to be mean or...
    Sorgun Sorgun 26-30, M 3 Responses Feb 21

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    Indeedly--makes effective communication a ***** I gotta say. And then there's the difficulty to quickly adapt, and sometimes people say stuff in a way that you just don't get and...
    Cryx Cryx 16-17, F 1 Response 2 days ago

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    I have it. Mayve yes or maybe no. I dont know but there are signs. Although I wasnt diagnosed coz going to a psychiatrist or something has a negative stigma in my place. When I was...
    WifeOfVegeta WifeOfVegeta 26-30, F 1 Response Feb 4

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    I'm 22 years old the mother of two and one on the way. for the past month i have been out of my doctors and endocrinologist whom thought i had hypothyroidism until i had an...
    jesskap jesskap 22-25, F Feb 21

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    i am aspie and i am proud of it. it makes me who i am and ucan all say like it makes some things i know i was diagnosed last year with this and high functioning augism and this is...
    prodemonz prodemonz 13-15, M 3 Responses a week ago

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    I have just received some lab work suggesting that I have Gilbert's Disease, also known as Hyperbiliruninemia. Is anyone familiar with this condition? Do you have a story to share...
    Emilyandbilly Emilyandbilly 22-25, F Feb 17

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    Hello people, I am 40 years old I have severe periodontal disease, I am not here for pity, its my fault I have this, poor hygiene in my younger years, smoking unfilterred cigrettes...
    Wakeup56 Wakeup56 36-40, M 1 Response 5 days ago

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    I want to but I can't tell anyone that I have a mental disease. I've been depressed for 13 years and my emotion has been up and down. Some of my friends know this of course but I...
    Kayu96 Kayu96 31-35, F Feb 11

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    Hello! I am sorry if this is going to be too long. Well like two years ago I worked out a lot (1h/day, 7/week, no warmup, only aerobic) and after like 5 or 6 months when I started...
    iammarymary95 iammarymary95 18-21, F 3 Responses Feb 12

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    I have McDonald's across the road from me when my perent are at work I go there and eat that why I'm so fat
    matto432 matto432 13-15 1 Response Feb 6

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    So it's hitting week 10 now that I have been unemployed and I am starting to feel completely hopeless. I have two degrees, a Bachelor and a Masters degree and yet I cannot seem to...
    evollove evollove 41-45 1 Response Feb 13

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    I broke out with dermatographic 1.5 years ago but it was controlled by Zyrtec 1/2 every few days. It was pretty much gone. Just an occasional itch with no appearance. 2 Fridays...
    camsmom81 camsmom81 31-35, F Feb 13

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    Yesterday , something happened that brought fear to my heart and tears to my eyes, I felt so sad and didn't understand why. While I was on the bus with my sister, it was a double...
    Starz93 Starz93 18-21, F 5 Responses Feb 16

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    My sister does, and I'm that sibling. I have asperger's syndrome, a form of high-functioning autism. When I was younger I would get angry at the littlest things. I remember...
    ftmFreddy ftmFreddy 18-21, T 1 Response Feb 9

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    I have writer's block. I need to pause for a bit on a story I am writing.
    mother1983 mother1983 31-35, F 3 Responses 6 days ago

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    Hi I am a 20 year old girl in the uk. I was diagnosed with mosaic turners when I was born but I've never even thought about the condition that I have, it's never really effected me...
    MissLisac MissLisac 18-21, F 1 Response 4 days ago

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