Post

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

    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

    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

    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

    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

    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

    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

    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

    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

    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

    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 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

    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

    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 3 Responses Aug 6

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 Aug 14

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 6 days ago

    Your Response

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

    Your Response

    Cancel
    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 6 Responses Aug 2

    Your Response

    Cancel
    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 Aug 15

    Your Response

    Cancel
    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 Aug 16

    Your Response

    Cancel
    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 Aug 17

    Your Response

    Cancel
    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 Aug 21

    Your Response

    Cancel
    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 5 Responses 4 days ago

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 2 Responses Aug 10

    Your Response

    Cancel
    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 1 Response Aug 18

    Your Response

    Cancel
    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 Responses Aug 20

    Your Response

    Cancel
    I am always looking for ways to meet up with other people who have aspergers in public sessions but here in Cheshire the only options are specialist social events such as the...
    gc12091985 gc12091985 26-30, M 1 Response 6 days ago

    Your Response

    Cancel
    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 day ago

    Your Response

    Cancel
    Do any of you keep like dairy/journal
    shadowfluffy6 shadowfluffy6 18-21, F 2 Responses Aug 16

    Your Response

    Cancel
    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 Aug 20

    Your Response

    Cancel
    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 18 hrs ago

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 Aug 17

    Your Response

    Cancel
    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

    Your Response

    Cancel
    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 5 days ago

    Your Response

    Cancel
    *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

    Your Response

    Cancel
    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 days ago

    Your Response

    Cancel
    I have Hashimoto's and hypothyroidism. Nothing new, was diagnosed over a year ago. However, my symptoms have become out of control. I need my medication adjusted. While I'm waiting...
    justb33 justb33 36-40, F 1 Response Aug 13

    Your Response

    Cancel
    YOU ARE THE MOST BEAUTIFUL PERSON SOMEONE COULD EVER WANT, YOU HAVE ALLWAY'S BEEN PERFECT JUST THE WAY YOU ARE!, LIFE OWE'S YOU EVERYTHING, JUST ASK!
    JEM404 JEM404 41-45, M Aug 16

    Your Response

    Cancel
    I can't really help myself... I have medication but it isn't really for the ADHD I have. It's kinda like a a little of each type but more of the temper one out of all other than...
    DreadlockJesus DreadlockJesus 31-35, M 1 Response Aug 5

    Your Response

    Cancel
    I'm quite shy