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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. 25 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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    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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    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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    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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    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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    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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    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 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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    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 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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    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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    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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    Related Experiences

    Today was the APDA Parkinson's Walk in Seattle. It was a pretty good turn out. In total the walk raised almost $26,000 for Parkinson's research. Personally I was able to raise...
    LifeinWoodinville LifeinWoodinville 41-45, M 3 Responses 6 days ago

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    I had Grover's on my back and chest. Real itchy. My dermatologist prescribed Triamcinopone Acetonide. Expensive and it didn't seem to help much. I had an old bottle of Calamine...
    mrbob8 mrbob8 70+ 5 days ago

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    I first developed a rash on both of my arms in 2008. Since then I have seen 9 doctors and the 9th doctor was the first one who could identify the rash. He told me there is no...
    Anstead Anstead 70+, F 5 days ago

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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 Aug 22

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    I was diagnosed at age 8 with Sjogren's (I am now 22 years old) I have never talked to another person with the disease but would love to. As you know if you have this as well...
    hollyphoenix92 hollyphoenix92 22-25, F 1 Response Sep 5

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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 Aug 22

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    I have this horrible disease and I totally understand the symptoms very well. my question is, and this may sound morbid but how does a person die from this? I'm in great...
    jamieannilyn jamieannilyn 36-40 Sep 9

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    People judge me a lot when they find out that I have Asperger's.
    AveryWeinstein AveryWeinstein 16-17, F 2 hrs ago

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    So I went to my gynecologist, and ended up being tested for my irregular menstrual cycle. They found some issues with my thyroid, and told me to get it checked out with my primary...
    rollingdoro rollingdoro 22-25, F 1 day ago

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    Laser eye surgery in under a month l have no option but to try this l have a severe case of this disease and have to be taken off all of my steroids due to health risk/problems...
    Tspklondon Tspklondon 26-30, F Sep 6

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    I'm pretty sure I have Lyme Disease... And after reading everyone's experiences, I am almost positive. I pulled a tick off of me about three years ago and developed the signature...
    Efmatthe9 Efmatthe9 22-25, F Sep 13

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    My family has known for a while that our mother has the early onset on Alzheimer's and we have watched her quickly go down hill. Early yesterday she called us and told us that my...
    ColumbiaTiger ColumbiaTiger 41-45, M 1 Response Sep 12

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    It had been a whirlwind weekend - I flew from Georgia to Pennsylvania at o' dark early to surprise my aunt for her 60th birthday - it was a blast! Woke up the next morning, Sunday...
    kemeki kemeki 26-30, F Aug 26

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    With help from my psychologist (who's very successful and specialized in autism, along with other things.) shed a light over a little something that I've been thinking about for a...
    MissClueless MissClueless 16-17, F 3 Responses a week 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 Response Aug 21

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    I used to really hate myself, I honestly did. But now, I'm happy I have what I have. When I was in elementary school, I never talked to anyone, I would walk around the playground...
    ThatRobotChick ThatRobotChick 18-21, F 4 Responses Aug 29

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    One of my more persistent tics is groping. If i notice, feel(like in a hug or brushing against me), or remember what they feel like, i have to grab a woman's breasts. I don't think...
    thetalkingmushroom thetalkingmushroom 18-21, M 1 Response Sep 11

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    Asperger's Syndrome has caused me many problems regarding social behavior (what i should, and shouldn't do). I screwed up today, and am really upset about it. Hopefully you guys...
    TyphlosionWolf TyphlosionWolf 18-21, M 1 day ago

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    And through Asperger syndrome, I met a good friend on this website. Since then, we have met in person and he and I are beyond best friends; we are true brothers and always will be...
    chubbystringbean chubbystringbean 22-25, M 1 Response Sep 1

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    I was 12 years old and I didn't have any protection. For the longest, I regretted not going through with it, but I saved myself for my high school sweetheart that I met when I was...
    iamokaynow iamokaynow 31-35, M 1 Response Sep 2

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    have plans for tonight? well too damn bad! Your getting bruises, cuts, pulled muscles, and a nice concussion, enjoy!
    thetalkingmushroom thetalkingmushroom 18-21, M 1 Response Sep 11

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    Bells Palsy day #656. Facial paralysis is still about 90% however I still have numbness on the entire left side of my face. I went the entire summer without experiencing headaches...
    jrosskc jrosskc 46-50 3 days ago

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    Got it from my dad. I'm not as bad as he is cause I fight to make it not define who I am. Though at first I felt bad but then I felt happy cause I'm gonna get money from the...
    YLIhououin YLIhououin 18-21, M 3 Responses Sep 1

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    Uncoordinated Somehow, I'm reluctant to get hit with a ball, bat, shoe, kid, or some out of the blue object when I walk into a school gym. Now every time I walk anywhere near...
    kelseytoby1337 kelseytoby1337 16-17 2 Responses Sep 2

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    Its really annoying with the stupid spasms and twitches, and sometimes i can say bad stuff and it gets me in a lot of trouble :(
    RazorToMySkin RazorToMySkin 16-17, M 1 Response 4 days ago

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    My husband has just been diagnosed with Ocular cicatricial pemphigoid. Hoping to connect with others who also have this rare disease
    jroush jroush 51-55, F 4 hrs ago

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    I know what you're going through and I'm so sorry that you are. When I read this group and the postings in it, I cried the entire time because your experiences are eerily close to...
    smgreen1703 smgreen1703 22-25, F Aug 24

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    I have a heart disease known as Tetralogy of Fallot, and I've had since before birth. This is a defect that causes a hole in ones heart, and I had surgery after I was born. This...
    StarShineGirl StarShineGirl 16-17, F 2 Responses Sep 6

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    I have extreme anxiety about my health. Every time I see something off about my skin or have pain anywhere I freak out and think I have a serious disease. I don't know what to do...
    kico4 kico4 13-15, F 3 Responses Aug 27

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    Please think twice about ECT. It changed my life forever. I submitted to treatment 2 years ago for depression and am now being treated for PTSD and severe depression because of...
    Nomoreforme1 Nomoreforme1 51-55, F 2 Responses Aug 30

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    Making Friends at Payless... Don't be afraid guys..."TRY THEM ON" Those are the three magical words my favorite sales associate, Maribel told me in 2010, and they still ring true...
    esthr009 esthr009 46-50, M 5 Responses 6 days ago

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    Not only are they hyperealistic, but I'm lucid in them. If i die in one, I don't wake up, i either continue as a spirit, zombie, whatever happened to me and continue the dream...
    thetalkingmushroom thetalkingmushroom 18-21, M Sep 11

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    Or at least I used to be. It's hard being in love with someone you know you can never have. It's even worse when you have to force yourself to let go and move on. And being "just...
    Iyaniaya Iyaniaya 22-25, F 2 Responses 4 days ago

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    Let me get something straight. Just Bc I post in here talking about my struggles with bigger boobs does NOT mean I am going to show you my boobs or even show you my bras. Wtf. I...
    Country00Girl Country00Girl 18-21, F 9 Responses Aug 21

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