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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

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 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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    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 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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    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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    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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    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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    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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    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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    Related Experiences

    Many of them are online....as in I have never even met them in person. I have a pretty strong connection with a couple of them, but nothing I would consider inappropriate. One is...
    TornSoul13 TornSoul13 36-40, M 19 hrs ago

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    Just diagnosed this week although they called it neuralgic amyotrophy. I believe there is another name for it as well, do you know? Does this all mean our immune system has...
    tickatocken tickatocken 41-45, F 4 hrs ago

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    This is not something I know how to explain. (tried writing this post 10 times and failed). But basically. I have had many breakdowns. Meaning I lose it. I just start crying and...
    shhyoudontknowme shhyoudontknowme 16-17, F 1 Response 17 hrs ago

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    My mind is badly fractured I hate the body I am in My thoughts shall destroy me As I mutilate my skin I'd rather change myself Than never live at all But it seems that change won...
    SkullRoseInsignia SkullRoseInsignia 16-17, T 16 hrs ago

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    I have met some great people on here but why are there people on EP who are bitter at you for no reason? You post your comment to share your experience and they get all worked up...
    easynuh easynuh 26-30, F 1 Response 10 hrs ago

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    For as long as I can remember I had felt....a little different than others. I didn't care about most things. I didn't want or need much social activities. I had, and still have, a...
    secretlyhonest1 secretlyhonest1 22-25, M 3 Responses 9 hrs ago

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    I know that life is not easy for anybody. But sometimes I wonder how am I so ok, when I know people have experienced similar traumas and have broken and can no longer function in...
    salcla salcla 26-30, F 9 hrs ago

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    I have tspk for almost 3 years now and been telling to use fml steroid 4 times a day with cyclosporine , everytime when we try to stop steroid. I got flare up and the bad pain...
    naassa naassa 26-30, F 7 hrs ago

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    my lover is not human!, it is a spirit that has been with me since I was about 7 and we have been in contact ever since, she is very protective of me and has keep me isolated from...
    seikofontay seikofontay 18-21, M 5 hrs ago

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    Dr: "I have some bad news. You have cancer. But I'm afraid that's not all...you also have Alzheimer's Disease. Patient: "Oh thank God, I thought I had cancer."
    biggunsatx biggunsatx 41-45, M 1 Response 1 hr ago

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    Apparently I do, at least that's what I hear whenever I talk to people through Skype calls. I think it's because it's deep and I have a unique accent having moved around a lot
    Procrastin8 Procrastin8 22-25, M 1 Response 18 hrs ago

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    My mom has a legitimate mental issue, my dad looks like he's slowly dying day by day, my older sister isn't around at all anymore, and my little sister is just doing her thing. My...
    anonamanda001 anonamanda001 16-17, F 3 Responses 18 hrs ago

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    I'm 16 never had a girlfriend. I've hooked up with girls, but we just made out. I have trouble getting girls to like or notice me. The last girl I had a thing with broke my heart...
    skaterguy skaterguy 18-21, M 17 hrs ago

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    Has anyone had much experience with having epilepsy and being pregnant or raising kids? I have a two year old step son, and I hate having seizures in front of him. My husband and I...
    sarbear82 sarbear82 18-21, F 1 Response 16 hrs ago

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    Tell me you have cancer and I will feel nothing, your mother died? I wont understand how you feel but if im in a room with you and someone tries to exploit something like how cocky...
    LotusPsychosis LotusPsychosis 18-21, F 15 hrs ago

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    Hello Everyone! I'm currently 16 years old, 7 months ago I was going school, hanging out with my friends and living life to the fullest! But now everyday is a struggle. I don't go...
    amandas1011 amandas1011 16-17, F 3 Responses 15 hrs ago

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    I have memory loss, no appetite, no motivation, and either can't sleep at all or only want to sleep. I realize now that when I think of the past, I tend to romanticize and feel as...
    deyada deyada 18-21, F 13 hrs ago

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    Why? Oh why? Why do I want things I can't have? There are things in front of me that I can easily get but why suffer wanting things I can't have.
    RedThatDescribesMe RedThatDescribesMe 18-21, F 1 Response 10 hrs ago

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    Till this minute.. im hurt with the drastic change.. but i am no one to him besides a silent crush that i have for him.. and i never got over it. I want him to treat me like...
    Marshello Marshello 13-15, F 1 Response 10 hrs ago

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    So let me get this straight.. I have been cheated on and tried to work it out. We both went to counseling and things were better for awhile. Then it happens again. This time it's...
    slim156 slim156 41-45, M 1 Response 10 hrs ago

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    Monster - I had a weird dream today. I dreamed that I was a father of a young girl who found out that I am a monster hunter, and that I have hunted down and wiped out all the...
    themanoflegends themanoflegends 22-25, M 2 Responses 8 hrs ago

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    I have nothing more to say than I have changed , but for the worst. I am evil. I feel this is my destiny for me to be evil.
    Thedepressedgirlatthewindow Thedepressedgirlatthewindow 16-17, F 7 hrs ago

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    Random! that's me, every day. what am I thinking right now ? about how god left me here to rot without any escape from this world. Expect death. I want to leave this world...
    holyteenobserver holyteenobserver 16-17, F 6 hrs ago