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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. 24 People

    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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    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 2 Responses Mar 28

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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 2 Responses Jun 16

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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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    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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    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 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 Jan 20

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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 2 Responses Jun 20, 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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    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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    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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    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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    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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    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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    Related Experiences

    Well I find out tommarow at what stage my disease😁doctor said stage 2 but after seeing other xrays I believe it's stage 3 nervous about surgery and want them to skip the four...
    jeffbelcher jeffbelcher 41-45, M Jun 30

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    My son who is 15 has been diagnosed with kienbochs disease - they have put ha wrist in a cars and are hoping that the blod flow to the bones will return normally - we are in New...
    raegem raegem 46-50, F Jul 20

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    In 5th grade I started to notice that my back was begging to look like a hump like shape. My mom said it was cause of the way I stood and I needed to stand up straighter and not...
    InsecureEcho InsecureEcho 13-15, F 1 Response Jul 6

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    Oct 2012, Dr told me I have PD. Take medicine, but have good days and bad days. PD mostly affects my legs. When meds ware off, my legs hurt. Can not sleep, have to walk to...
    rjk01 rjk01 66-70, M 3 Responses Jul 7

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    Hello. I was diagnosed with A.D. 5 years ago, and 5 years before that I was diagnosed with Type 1 Diabetes. I am currently 20 weeks pregnant (and it has been terrible thus far!) I...
    jenyeaz jenyeaz 22-25, F Jul 21

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    i remember how happy I was when I had my first real poop after being diagnosed with crohns.
    helreb helreb 18-21, F 1 Response Jul 9

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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 3 Responses 6 days ago

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    Looking for people who have server Menieres Disease and has had the shunt surgery on my left ear but now I'm getting in my right ear
    gborron gborron 46-50, F 2 Responses Jul 21

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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...
    BrainnahGrace BrainnahGrace 13-15, F 2 Responses 3 days ago

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    I learned only a few years ago that I have Asperger's Syndrome and am clumsy as well as frequently speak very wierdly sometimes, and am socially awkward. I am also narrow minded in...
    Fenrirfenn Fenrirfenn 18-21, M 4 Responses Jul 3

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    I think I have Asperger's. I have been diagnosed with many disorders over the years, depression, anxiety, ocd, ptsd, and we have touched on Asperger's, but never has it been a...
    13thgen 13thgen 36-40, M 2 Responses Jul 16

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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 4 days ago

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    I have stage 4 chronic kidney disease since last nov. Of 2013,right before Thanksgiving. And I do have couple donors to help me but I guess the hospital is still gonna take awhile...
    letsbestrong letsbestrong 31-35, F Jul 20

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    I have had this Menieres Disease for 20 years I had the surgery in my left ear 3 years ago where they put a shunt in worse thing I ever did my balance is a bigger problem now I...
    gborron gborron 46-50, F 1 Response Jul 21

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    Can doing drugs cause this disease? I got a blood test that shows there's an underlying health condition that's causing it., My rheumatoid count is off. Anyone have information?
    Rosaalie Rosaalie 18-21, F 2 Responses Jul 9

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    Sometimes I wonder what my family thinks with me having Asperger's or how long they've been keeping it from me. When I found out in February, my mom confessed to knowing I had it...
    kelseytoby kelseytoby 16-17 2 Responses Jul 8

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    My Morton's neuroma is now gone... When I went on a ski trip with my family about eight years ago, I ended up in the ski shop because my foot hurt too much to ski. I thought that...
    mark7722 mark7722 46-50, M Jul 10

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    I was diagnosed with Asperger's when I was 16, because the school nurse recommended that I get tested for AS. My teachers thought I was [pause] different. When somebody says you...
    RazorKenny RazorKenny 26-30, M 2 Responses Jul 13

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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 5 days ago

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    **** I get when I tell someone I have aspergers "But you’re nothing like ____!"
Sometimes I’ll tell someone I have aspergers and they’ll just happen to have a friend or...
    nikkianni nikkianni 13-15, F 4 Responses Jun 29

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    Anyone have any advice for coping with the hot summer weather? I tolerate cold pretty well, but after being out in the sun for a little over 2 hours yesterday I had a horrible...
    dolceharajuku dolceharajuku 26-30, F Jul 6

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    It's the reason 95% of everyone I have ever known has eventually pushed me away. I'm not trying to sound like a pity party but that's been my real world experience. I'm lonely...
    KusanagiShiro KusanagiShiro 26-30, M 4 Responses Jul 10

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    I was diagnosed with thygeson's SPK when I was 11. I''m 36 now and was accustomed to daily painful blinding flare-ups when using steroid drops. My eye glands do not produce...
    captainbrendo captainbrendo 36-40, M Jul 13

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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 7 hrs ago

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    My doctor advised me to eat gluten-free, and I have been. I'm just wondering what type of symptoms other people get when they actually eat something with gluten. Thanks!
    deleted deleted 26-30 1 Response Jul 10

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    Anyone else hashimotos symptomatic but normal thyroid levels? If so what symptoms? I have brain fog, confusion, memory issues, tingling head, some sleeping issues, what seems like...
    CoachDanny CoachDanny 41-45, M Jul 16

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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 6 days ago

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    Something I am having increasing difficulty with at the moment is that nobody knows exactly how difficult things are for me. This includes myself. I don't know how easy...
    Teab Teab 41-45, M 1 Response Jun 29

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    My autism ruined most of my life. I wish I could relive as an autistic anthro fox
    Miserablechildhood Miserablechildhood 13-15, M 4 Responses Jun 29

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    I was just diagnosed this week. Now what?
    VBLOVE1106 VBLOVE1106 22-25, F 3 Responses Jul 5

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    It hurts like a ***** right now . **** cold weather :( purple, red, and yellow feet.... How pretty -.-
    Rosaalie Rosaalie 18-21, F 3 Responses Jul 10

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    I've been dealing with this for about six years now.. Has actually gotten me into the field of optometry, and has shown me my passion for eyes. God is good!
    CaseyLanier CaseyLanier 16-17, F Jul 18

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    My symptoms started when I was 16. I began to experience widespread joint, muscle pain, and headaches. I was seen by multiple doctors who said that I was perfectly fine and just...
    eeeck eeeck 26-30 Jul 21

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