Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

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 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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Related Experiences

    I was recently diagnosed with this disease.It is so frustrating to see doctors not having knowledge and more than that their unwillingness to help.It all started last yr in July...
    me317 me317 36-40, F Apr 15

    Your Response

    Cancel
    I have seven. A dragonfly/phoenix to represent rebirth, a gryphon to represent strength, the cliche feather turning to birds with "Freiheit" scrawled under it (but its my own...
    dontyouunderstand dontyouunderstand 18-21 1 hr ago

    Your Response

    Cancel
    Ok so recently i owned up to this girl who i had taken i liking to by telling her that i like her, and to my surprise she said that she liked me too. Thankfully the place we were...
    pizzaandmusicarebae pizzaandmusicarebae 22-25, F 1 hr ago

    Your Response

    Cancel
    When I was young used to feel.....in fact, was close to normal up until about 7 years old.... That is when my ASPD first began to show up..... But, over the past few years, I...
    SAFFRONtheBLOODYqween SAFFRONtheBLOODYqween 13-15, F 1 Response 37 mins ago

    Your Response

    Cancel
    I've been having a series of reoccurring dreams recently. Which is rather odd for me as I rarely ever remember the dreams I have in the first place. Yet as the dream progresses...
    snowberry75 snowberry75 36-40, F 1 Response 27 mins ago

    Your Response

    Cancel
    I was going to write something..... I changed my mind. I can't. Let's do this instead. Make me feel like I'm not alone. Can you tell me why you have PTSD in one sentence?
    ThundercatGummiebear ThundercatGummiebear 26-30, F 1 hr ago

    Your Response

    Cancel
    I hope you have gotten what you deserve after abusing me for 3 yrs.
    Bluetangerine Bluetangerine 46-50, F Mar 27

    Your Response

    Cancel
    They really should have made Monday the second day of the weekend, that would solve all the Monday blues problems!
    csouls csouls 31-35, M 3 Responses Mar 27

    Your Response

    Cancel
    This is an interesting article and I have to say I agree. I think I'm going to try to give it up for 30 days starting on the 1st http://www.vice.com/en_us/read/i-gave-up-****-for...
    greeneyz83 greeneyz83 31-35, F 3 Responses Mar 27

    Your Response

    Cancel
    I always have dreams of getting hit and heavy with an ex but whenever he's ready to enter me I wake up....... Ughhhhh
    warmwetdeep warmwetdeep 18-21, F 3 Responses Mar 27

    Your Response

    Cancel
    I really don't like tumblr actually >.> I only use it because -Im not attractive enough or interesting enough for youtube -too many old people on facebook -**** twitter -instagram...
    deleted deleted 26-30 Mar 27

    Your Response

    Cancel
    I've had insomnia for a few years now. Usually would get to bed anywhere around midnight - 3am. But the past several months it's been worse then usual. I'm now up till 6-10 am...
    PsychGirl94 PsychGirl94 18-21, F 3 Responses Mar 27

    Your Response

    Cancel
    Good manners make a full man. They are very essential for human civilization. Without good manners, man is like a purse without money, though it is very attractive from outside...
    malak87 malak87 26-30, M Mar 27

    Your Response

    Cancel
    I am so upset. Few hours ago she switched to "worship mode". I went to bed I couldn't take her constantly ignoring me. Wake up hours later and she hasn't checked on me. Say hello...
    1lonelydaisy 1lonelydaisy 41-45 2 Responses Mar 27

    Your Response

    Cancel
    Anyone got a tattoo inbox if have
    VioletSalmon VioletSalmon 18-21, F 1 Response Mar 27

    Your Response

    Cancel
    I wish I owned a ****** h3 The car is freaking cool... My sister husband have one. When I sit inside I feel like a big women. Big women with money..
    lorrena19 lorrena19 18-21, F 2 Responses Mar 27

    Your Response

    Cancel
    I have a nicely sized group of friends I see regularly at school. There are five girls and four guys. We are relatively all good friends with each other. Last night, I dreamt...
    PorcelainMaiden PorcelainMaiden 18-21, F Mar 27

    Your Response

    Cancel
    The best way to not get a broken heart, is to pretend that you don't have a heart.
    serenapaul serenapaul 13-15, F 2 Responses Mar 27

    Your Response

    Cancel
    I just got my tongue pierced last month, I love it(: I love playing with it! Keeps my mouth busy and it helped me quit biting my nails! I just bought a vibrating tongue ring...
    gigglebuttt gigglebuttt 18-21, F Mar 27

    Your Response

    Cancel
    Many members participate and provide us with their expereinces and feelings of life, but many also just read others expereinces and donot participate at all, which is a shame. So...
    TheEnglander TheEnglander 66-70, M 2 Responses Mar 27

    Your Response

    Cancel
    I don't know how unique my case is, but I lost both of my parents very early in life. My mom died when I was 18, my grandma died the next year and my dad died when I was 22. My...
    xtrishax xtrishax 26-30, F 1 Response Mar 27

    Your Response

    Cancel
    Doing it My way! In restropect I wish I had not I would have heeded my Parents advice and not married young or married my first wife. I worked too hard for the family only to...
    TheEnglander TheEnglander 66-70, M 1 Response Mar 27

    Your Response

    Cancel