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I Have Ichthyosis Vulgaris

A Ichthyosis Vulgaris anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Ichthyosis Vulgaris. You're not alone. 54 People

    Scared but Hoping To Be Finally Happy

    i'm so glad to have come across this helpful site. i too, suffer from a form of itchyosis since i was born. Extremely dry skin all over and very deep fold and lines in my hands and feet. i am 43 years old and have a hands and feet of a 90 year old woman. My condition has been...
    foreverconcious foreverconcious 41-45, F 2 Responses Aug 30, 2012

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    I cannot stop crying right

    now :) :( tears of joy and sadness. Reading these stories bought me to tears. People that are like me!! On my body it causes my scaley skin and my hands and feet are wrinkly It took me until now to realize how much my setbacks revolve around this condition! I am 24 and still...
    teagoddess teagoddess 22-25, F 4 Responses Jul 3, 2014

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    Itch Till I Bleed

    I scratch so much till I bleed It is no fun having fish scales Have tryed many different lotions that didn't help.
    kpitz kpitz 51-55, M 1 Response Nov 19, 2009

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    I Cry For My Baby

    My daughter is only 4 years old and started showing symptoms of IV at 3 months old. The drs kept telling us with skin treatments and special creams she would grow of it but as shes gotten older its gotten worse. She never gets a peaceful nights sleep, she wakes up in the middle...
    kykymom kykymom 26-30, F 1 Response May 27, 2011

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    Me Too

    I know it's a big no-no but sun beds help with my ichytiosis amazingly. I'm 40 but have been managing this for most if my life. Have just bought some SR lotion and am waiting for it to arrive. Also find dermaltherapy a good brand to use. I absolutely hate the condition. I go...
    Thenunnery Thenunnery 41-45 3 Responses Jun 28, 2013

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    Probably The Biggest Contributor To My Personality, Which Is Kind Of Sad

    I hate my body more than anything else in the world. It's weird, that the smoothness of you skin can affect who you are in such a dramatic way. At a young age, I knew I was different, and was incredibly insecure. You know how they say all bullies are insecure? Well I was a bully...
    flashman92 flashman92 18-21, M 8 Responses Sep 27, 2012

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    Accept It!

    I have been suffering from ichthyosis since birth... from scalp to my heels.. ! its been tough all through but now I have courage to lie the way i am.. accepted what I am.. and believe me its nobody's fault.. U have to accept.. It was you!I am 22.. n still one thing that I cant...
    motii motii 22-25 Jun 11, 2012

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    Misguided For Years....now Truly Diagnosed

    ..with Ichthyosis Vulgaris. You see, for as long as I can remember, I have had severe dry skin---and was always told it was excema. As a child I would sit in a warm bath and de scale my legs. My scalp was always dry, my ears waxy. I knew I was "different", but dealt as best as I...
    Adrift4years Adrift4years 41-45 2 Responses Apr 17, 2012

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    Hi every body. I hope I can add some extra help.

    I'm working for a thermal mineral water curing center in Turkey. We live very happy "skin diseases healing stories" including ichthyosis and i want to share it. I can give more details if you are interested in. My mail is raufunal@yahoo.com
    runal1 runal1 41-45, M Mar 10, 2014

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    I have been a member of the Ichthyosis Vulgaris

    club for over sixty years. I just found the right drug. Acitretin 25 mg ... generic for Soriatane 25 mg. One pill per day, and I have skin like a baby. Price is very high (about 2,000.00 per month). You can not use this drug and plan to have children. You will also need a blood...
    Mark189 Mark189 61-65, M Feb 24, 2014

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    Ichthyosis Vulgaris

    at 69 years old, I have suffered from ichthyosis vulgaris all my life.  Only recently have I found some relief from this skin disorder. After shower or bath, I slather my body with proyplene glycol (over the counter purchase at walmart pharmacy) while still wet ( I DO NOT towel...
    Daniel102 Daniel102 66-70 1 Response Mar 19, 2011

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    I have struggled with icthyosis vulgaris

    for a long time . I first got diagnosed when i was 12 and have tried a myriad of creams and ointments without much success . It has been an extremely frustrating experience especially with very little knowledge of the condition among the general public . I started using a lotion...
    shetty87 shetty87 26-30, M Oct 12, 2014

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    Ichthyosis Vulgaris Is Aggressive While Taking Sweets And Drinks Having Sugar

    Dear Friends, I also have Ichthyosis Vulgaris since almost 20 years.. I know , It is not my mistake. When i consult doctors, they are saying It is a Hereditary ichthyosis vulgaris. but i observed it on my legs with black spots during age 21. i feel it is an acquired...
    srinivasub srinivasub 41-45 Apr 6, 2013

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    Still Dealing But Accepting

    As I just sat an read a lot of these posts I couldn't help but to ball my eyes out. They brought back so many memories of childhood. Being called an alligator and getting bullied on a daily basis if I wore shorts to school. I remember at an early age begging my parents to take...
    Jfallen Jfallen 31-35, F 1 Response Nov 30, 2012

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    Another Ichthyosis Vulgaris Case

    I can relate to everyone saying they have this rare skin disorder because i have one too.   It all started when i was in college, fish scale thingy started to show in my thighs and legs.  I wad diagnosed with ichthyosis vulgaris.   I thought it can be...
    mjsalvador mjsalvador 31-35, F 6 Responses Apr 28, 2010

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    All My Life

    I have been afflicted with Ichthyosis Vulgaris all my life. I've bought expensive creams and lotions but recently I've found something simple that has the scales peeling like crazy and still leaving my skin soft. I use Palmer's cocoa butter lotion right after I step out of the...
    momosoftskn momosoftskn 36-40 Jan 27, 2013

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    Itch Till I Bleed

    I scratch so much till I bleed It is no fun having fish scales Have tryed many different lotions that didn't help.
    kpitz kpitz 51-55, M 1 Response Nov 19, 2009

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    I have found this condition has had an effect

    on me throughout my life though less so as I get older. I am 41 now. I remember getting married an even though I made sure the ceremony was low key the exchanging of rings was excruciatingly umcomfortable. I always hide my hands normally. I feel for my young daughters the most...
    pennsylvania65000 pennsylvania65000 41-45 Jan 21

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    Actually my son was born with Ichthyosis

    Vulgaris but we didn't know what it was until he was 11 - until then we had tried so many "eczema" and dry skin creams but nothing worked - even when diagnosed the creams recommended made no difference. Although I was more frustrated than him, he has now started asking how to...
    bookera bookera 41-45, F Jan 13

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    I Have Icthyosis Vulgaris

    This is the harsh story all icthyosis sufferers have to share but never get the chance to share until they find anonymous channels such as this. When we say we dont feel normal we know we sound off like the average human just self doubting their looks in comparison to social...
    anonymous1112 anonymous1112 18-21 1 Response Nov 3, 2012

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    I Am Beautiful :)

    I'm 19 and I have had Ichthyosis vulgaris since I was little, although I only came to know about the name of the skin disorder when I was 16. Since young, people have always commented about my rough skin - on how my palms have too many lines or how scaly my legs are. I had to put...
    lilian1993 lilian1993 18-21, F 4 Responses Jul 3, 2012

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    Related Experiences

    I no longer have sex, (well I only have had sex about 10 times, started in my mid thirties and stop about 3 years ago) for many reasons. Main reason it hurts so much and on top of...
    UKtutu UKtutu 41-45, T 2 hrs ago

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    Welcome To My Mind The daily election concerning suicide is nearing its last poll. Life is great, love is wonderful, I have so much to discover! Life is stupid, love doesn't...
    metagross metagross 18-21, M 35 mins ago

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    Does anyone have sleep apnea software to monitor their sleep data through their PC at home? I am using a vpap and am having a really hard time adjusting from auto vpap to vpap...
    True2myHeart True2myHeart 31-35, F 1 hr ago

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    My dad died in a fight when he was drunk when i was 3 . haha. Damn guy. The guy who killed him had knucklebusters like a punch bltch. Too much blood rushed to his brain. I barely...
    Savagez Savagez 13-15, M 2 hrs ago

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    I have social anxiety so I had to leave school at 16 years old. I'm now being home schooled, and have been for two weeks now and the thought of them coming over terrifies me...
    emilythegreat emilythegreat 16-17, F 1 Response 1 hr ago

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    Wow! Violated doesn't even begin to describe how I feel right now!! I was catfished by a girl by the name of "plunkedd" on okcupid! She was using pictures of a Russian model and I...
    idciloveit idciloveit 22-25, F 25 mins ago

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    Would anyone be able to guess how old I am in this photo? I am 23.... I think I look 16 😐 .... 😫😫😫 I'll never look my age! I just want to look older. I feel as though I...
    Kristaaaaaaaaaaaa Kristaaaaaaaaaaaa 22-25, F 2 Responses 1 hr ago

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    So I've seen black shadows since I was little only a few ever made me feel scared. Now I can't stop hearing bells. When I hear them I don't feel comfortable. It's a very dark...
    ScarletVisions ScarletVisions 18-21, F 1 Response 1 hr ago

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    I have a bald spot on my head that hair never grows from as I had it cut open when my father banged my head on the edge of the door when I was 11. Funny thing is that, even now its...
    SilverLeviathan SilverLeviathan 18-21, F 1 hr ago

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    What should I do? Bf had been nagging me to delete photos of my ex. I have none on my fb just I am tagged in a few photos of his. I have removed all the pictures of my ex and most...
    LD02 LD02 22-25, F 8 Responses Dec 30, 2014

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    I have a pet wolf (named lucky) I had him since he was a pup he is a red wolf and doesn't have an aggressive side
    Tabaticbloom Tabaticbloom 13-15, F Dec 30, 2014

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    I have a white lab named chip my parents had him since before I was born :)
    Tabaticbloom Tabaticbloom 13-15, F Dec 30, 2014

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    So me and my best friend(guy) work at the same place and we have the same schedule and we live near each other and today he took his car and I took my truck and we just got out...
    Hazel216 Hazel216 16-17, F Dec 30, 2014

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    I have never dated a girl/ woman my age. I dont know why. I mean i am not discriminate against women but ever since i started dating i have always ended up going out with an older...
    fahadkhalid1981 fahadkhalid1981 31-35, M 2 Responses Dec 30, 2014

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    Most of the girls that i have dated have betrayed me. they would say that they liked me that they wanted just to be with me and only me. than i would find them kissing other guys...
    Sladetgx57 Sladetgx57 18-21, M Dec 30, 2014

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    I have bdd and would like to talk to others who share the same experience.
    pixielite pixielite 51-55, F 1 Response Dec 30, 2014

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    I have found two types of people: those that have them (and love them) and those that don't. I love my Monroe, and had my nose pierced as well but couldn't keep the stud in and it...
    MsInvis MsInvis 46-50, F 2 Responses Dec 30, 2014

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    Been beat up more than a couple times and have beaten people up just as much. I was a kid who was bullied who became a bully. I remember one fight i got beaten up so badly that i...
    TheEyeOfHeru TheEyeOfHeru 18-21, M Dec 30, 2014

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    God I ate bowls of chocolate peanut butter and jelly as an after school snack wtf have I done
    MonkeyGirl0909 MonkeyGirl0909 13-15, F Dec 30, 2014

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    So I was talking to my friend yesterday and I realized that I was never hugged as a kid. Idk I just didn't. Any memory I do have of hugs It was because my parents did something...
    SkollHati SkollHati 18-21, M 5 Responses Dec 30, 2014

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    I do have some anger issues but they aren't as bad as my partners, I can control mine whether as she has trouble, she's trying to control them as hard as she can for our baby that...
    tyson2114 tyson2114 16-17, M Dec 30, 2014

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    I have , really . I was 10 at the time and during my bi phase. The car was actually an SUV that was sitting behind my friends house.
    pardax pardax 13-15, M Dec 30, 2014

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    I have insomnia, most nights it's not too bad but tonight I just can not seem to fall asleep.
    TheCreatorOfAll TheCreatorOfAll 18-21, M 3 Responses Dec 30, 2014

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    Earphones have recently broken so I've gone back to rubbish sleep. Struggle to get out of bed and feel tired all the time. Wanted to watch a movie for days but haven't felt...
    1lonelydaisy 1lonelydaisy 41-45 1 Response Dec 30, 2014

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    I just saw two of the cutest/hottest guys (imo) that aren't celebs yet. They were waiters/serving boys in a restaurant. They both have silky soft brown hair. And have the...
    xxxfakerhaterxxx xxxfakerhaterxxx 18-21, M 2 Responses Dec 30, 2014

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    I have anxiety, it was worse when I was a child and growing up was extremely hard however now I don't know if it is anxiety or Bipolar disorder basically I get Paranoia when am...
    deleted deleted 26-30 3 Responses Dec 30, 2014

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    last time i posted on here, i believe i was working at a waffle house. now, i have been working for my schools physical plant for about 2 1/2 months. i like it much better here. i...
    mstenorsaxplayer mstenorsaxplayer 18-21, F 2 Responses Dec 30, 2014