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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. 56 People

    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 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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    Have Hope :)

    I've had this skin condition my whole life. My father has it too. Luckily my skin isn't too bad and there are some areas that are smooth like under my knees, most of my face, and in my inner elbows. I have multiple health problems as well like being gluten intolerant. Growing up...
    1 Response Jan 15, 2013

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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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    New Ichthyosis Treatment

    Hi, I have had Ichthyosis all my life so can understand what people are going through. I am now using SR Lotion which we have developed over several years. It is the best treatment I have ever used and my skin is now pretty much normal. As others will say, going swimming, or even...
    2 Responses Jan 29, 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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    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 9 Responses Sep 27, 2012

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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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    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 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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    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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    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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    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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    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 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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    Have Hope :)

    I've had this skin condition my whole life. My father has it too. Luckily my skin isn't too bad and there are some areas that are smooth like under my knees, most of my face, and in my inner elbows. I have multiple health problems as well like being gluten intolerant. Growing up...
    2 Responses Jan 15, 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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    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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    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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    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 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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    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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    I want to share my entire experience with this disorder, as I have mostly had it for my entire life. I want to reflect, because most don't understand it. I am 28 now, and I have...
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    I'm new to this and I need to get this feeling out. So here I go. Second Grade is where it started. Mrs. Holston's class. I walked into that class not knowing what to...
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