Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

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

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    I have crohn's disease . I was diagnosed in 2003 , I would say I'm a very strong person with all the pain I go through . but it seems ever since I had my daughter 7 years ago I've...
    queenbee03 queenbee03 22-25, F Dec 10

    Your Response

    Cancel
    I wanted to share this. Envita Publishes Important Chronic Lyme Disease Treatment Study SCOTTSDALE, AZ--(Marketwired - December 16, 2014) - A revealing new study on chronic Lyme...
    mynameisjeff28 mynameisjeff28 26-30, M Dec 18

    Your Response

    Cancel
    A few years ago, I moved from the east coast of the United States to the southwest to go back to university after taking a year long break from school, and I didn't know a single...
    uglyhands uglyhands 22-25, F Dec 4

    Your Response

    Cancel
    My mother may not make it through the night. But she might. I am unsure what I should do. She's trying to walk around...I am trying to stay out of the nurse's way as they try ti...
    Myzery Myzery 31-35, F 2 Responses Nov 29

    Your Response

    Cancel
    So I have a very specific problem that I can't go a day without thinking about. I have this disorder called episodic ataxia type 2, and if you haven't heard of it (which is likely...
    theskyisarainbow theskyisarainbow 16-17, M Dec 11

    Your Response

    Cancel
    I have always felt like I want to die but can't kill myself because of what it would do to my family but mainly my daughter who I am so close to, I just don't want to face the hell...
    tealc2961 tealc2961 36-40, M 2 Responses Dec 17

    Your Response

    Cancel
    My daughter is 3 yr old,she just had the sprengel shoulder. we had a tough time coping up with decision to have the surgery done, she's so small for all this. but then finally...
    rameshdad rameshdad 31-35, M Dec 6

    Your Response

    Cancel
    I was finally diagnosed as being on the spectrum on November 2nd, 2014. The test used was the Gilliam Asperger's Disorder Scale and it was a three hour test done over three visits...
    lyricalongings lyricalongings 31-35, F 1 Response Dec 7

    Your Response

    Cancel
    I've tried to use it to my advantage. I'm gifted with writing and I believe Aspergers along with an abusive home environment help to give me that as well as other skills. Being...
    KnaisGuy KnaisGuy 22-25, M 3 Responses Dec 8

    Your Response

    Cancel
    I'm so glad I found this. Many of your stories are so similar to mine. I've seen twenty six doctors, having been diagnosed with fibromyalga, chronic migraines, osteoarthritis and...
    jsxburt jsxburt 46-50, F Dec 20

    Your Response

    Cancel
    The doctor finally told me I have it a year ago but so far no one believes it. Looking to meet others who would like to talk about it.
    keravon keravon 51-55, M 1 Response Dec 8

    Your Response

    Cancel
    I've struggled all my life socially. I never made a single friend until I turned 14. I was always "that weird, quiet girl." People were cruel to me and I could never figure out why...
    SecretGaygent SecretGaygent 22-25, F 5 Responses Dec 14

    Your Response

    Cancel
    So, my mother is still alive, but is now bed bound. That makes her angry, so she gets doped up to calm her down. Her kidneys may be failing...will find out tomorrow. She sees...
    Myzery Myzery 31-35, F 1 Response Dec 4

    Your Response

    Cancel
    My mother passed away at 6:09 p.m. Eastern Standard Time December 9, 2014.
    Myzery Myzery 31-35, F 4 Responses Dec 9

    Your Response

    Cancel
    Has anyone else read the Michael Vey series of books. Kind of Awesome that TS has a champion. :)
    jeepers92 jeepers92 41-45, M Dec 10

    Your Response

    Cancel
    I could write a whole blog about what the side effects are of me, but the main thing is i find myself to be insecure at times because i find it sometimes difficult communicating...
    agdnn agdnn 26-30, M 2 Responses 6 days ago

    Your Response

    Cancel
    Actually, in my case, it can be better described as this magical thing called laziness.
    brevitea brevitea 13-15 4 days ago

    Your Response

    Cancel
    I'm only 16.. 3 years ago I cut myself and I have been doing it on and off since then. I don't understand what's wrong with me. I'd be out with my friends, enjoying my time. Then...
    Aly262 Aly262 16-17 1 Response Dec 1

    Your Response

    Cancel
    Was diagnosed with Hashi's two months ago after two years of doctor after doctor, misdiagnoses and mismanaged meds. Extreme fatigue, dizziness, headaches, brain fog, exhaustion...
    craigrhodes craigrhodes 46-50 Dec 15

    Your Response

    Cancel
    It started out as red eyes, muscle weakness in the legs then a emergency blood transfusion, then told i have chronic kidney disease stage 3, then told im otherwise healthy but...
    shoshoneone shoshoneone 26-30, F 1 Response Dec 17

    Your Response

    Cancel
    This is my second post today in less than 30 mins because I have a lot to get off my chest. :) My biggest issue I believe is that I want what I can't have. It's not because I can...
    GhostBride GhostBride 18-21, F 4 Responses Dec 1

    Your Response

    Cancel
    So many of us are afraid of ourselves, of our own truth, and our feeling most all. We talk about how great the concepts of life and love are, but then we hide from both every day...
    Zelaleme Zelaleme 46-50, F 4 Responses Dec 10

    Your Response

    Cancel
    Today, there are three kinds of people: the have's, the have-not's, and the have-not-paid-for-what-they-have's. Earl Wilson
    jml2000 jml2000 56-60, M 1 Response Dec 10

    Your Response

    Cancel
    The strange thing about this is that it's requited. It's sentimental rather than sexual and I missed the feeling of being close to someone without having a constant urge to have...
    MarimbaJake MarimbaJake 16-17, M 2 Responses Dec 15

    Your Response

    Cancel
    sometimes i feel like i jsut cant go on anymore that i am not wanted here me and my mom use to have a good relationship b4 she started expecting me to turn out like my brother who...
    warriorwolf1818 warriorwolf1818 16-17, M Dec 7

    Your Response

    Cancel
    Unintentionally. I just want to sit on the edge of a building. I've pretty much isolated myself from others. I don't want to hurt anyone anymore. I'm a disease.
    nostalgickittens nostalgickittens 16-17, F 4 hrs ago

    Your Response

    Cancel
    Until you walk a mile in my shoes, it will be very easy to say "it's all in your head!" "You need to learn to cope!" Or my favorite, "is this even a real thing?" Misophonia...
    Annaelaine Annaelaine 13-15, F 1 Response Dec 7

    Your Response

    Cancel
    I lost my dad on November 22. I watched a big strong healthy man become over powered by Alzheimer's and dementia. I watched these diseases slowly destroy him. When he died he was...
    abluerose abluerose 41-45, F 1 Response Dec 3

    Your Response

    Cancel
    Well where to start? I guess it's always better to just put it out there....I was recent tly told I have liver disease and they think it's acute and that means it showed up without...
    Squeekarose Squeekarose 31-35, F 1 Response a week ago

    Your Response

    Cancel
    well hello I am having the wide excision surgery at 11am tomorrow. I have been dealing with this hs for sometime. MY first slice and drainage happened the day of history 9/11. I...
    hopeful72 hopeful72 41-45, F Dec 10

    Your Response

    Cancel
    Developed a heart disease and had to stop playing softball which dropped my scholarship to college. If I don't get the expensive surgery I'll die from heart failure or drowning in...
    CaliArs CaliArs 18-21, F Dec 13

    Your Response

    Cancel
    I guess this is karma for someone like me. I don't know. When I start to like someone, it always starts with an attraction. Crushes don't really last long in my case, and sometimes...
    ZeraSummers ZeraSummers 16-17, F 2 hrs ago

    Your Response

    Cancel