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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. 46 People

    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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    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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    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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    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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    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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    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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    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 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 Jul 3

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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 1 Response Aug 30, 2012

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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

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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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    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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    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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    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 Nov 30, 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 36-40, M Mar 10

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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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    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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    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 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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    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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    Related Experiences

    At the age of 17 I suffered from a severe case of acne vulgaris. It covered my face but it did more damage to my entire upper back, chest, some parts of my waist, thighs and...
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    I have never heard of it but apparently its an obsessive disorder and people with borderline personality and anxiety disorder have it. I don't know how i am going to stop because i...
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    Hi guys, I'm back and I've got a question. Do any of you lift weights? I am looking for some input. I have been lifting lately and so far the gains have been slow. I have lost a...
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    My life has been roller coaster in every sense. Coming from middle class family in India, I was diagnosed for Acute lymphoblastic leukemia (ALL) at 14 yrs which took me 5 months of...
    smilealllife smilealllife 31-35, M 2 hrs ago

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    Since I'm the only person in this category thus far, I suppose I'll explain what this means for me. For as long as I can remember, I have subconsciously assigned personalities to...
    Visola Visola 22-25, F 1 Response 46 mins ago

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    dear my EP associates, if you have added me to your circle, the only reason I havent added back is because we have not talked. if you wish to have me add you back, please talk. i...
    TheAmazingSpiderJoe TheAmazingSpiderJoe 18-21, M 2 hrs ago

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    Well I don't really but I know what it is like to have one, I used to have one till I mastered how to talk English. But it's sexy to have an accent makes you stand more IMO
    kamachulu kamachulu 22-25, M 1 hr ago

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    I was always taught to fear and hate people opposite of my race. I could never understand why I would want to hate another fellow human being when some of our living conditions...
    AquariusLife AquariusLife 26-30, F 4 hrs ago

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    I just have to say thank you to my mum for backing into my car this afternoon. Now I have to call the repair guy. Thanks Mom!!!! * these aren't our cars, just a photo I found...
    AquariusLife AquariusLife 26-30, F 2 Responses 4 hrs ago

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    I have spoken to a lot of people this Very early morning! 🌘 I have gotten great compliments💁, great advice 😇and met many wonderful people👫👭👫👭👫👭
    Fashionlover03 Fashionlover03 13-15, F 3 hrs ago

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    Recently my sister came out as a trans to the whole family. This has been very tough on us. I'm not against it, but I am having a hard time calling her a "he". I still cannot see...
    Thundrcrackr Thundrcrackr 18-21, F 2 Responses 3 hrs ago

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    I always have had drama, and always will have drama. The relationship between my dad and me has gotten a lot worse, I don't feel like talking to him ever after remembering all the...
    hebrokemyheart99 hebrokemyheart99 13-15, F 3 Responses 2 hrs ago

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    So many have left.... I just feel like whenever I get too close they just drift away. It always happens.
    oneandonly24 oneandonly24 16-17, F 1 Response 4 hrs ago

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    She is great. I have a girl crush on Felicia Day. <3 Umph.
    DarkwingGoslyn DarkwingGoslyn 31-35 4 hrs ago

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    I'm still in recovery and I relapsed a few times already about a week ago I think. Sometimes I want to be fully recovered and other times I never want to end my ednos. School is...
    XxbixtchybellaxX XxbixtchybellaxX 13-15, F 1 Response 3 hrs ago

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    I'm crushing on this really gorgeous girl a grade below me. We've hung out w/ friends in the mornings before school but that's pretty much it. Talked to her some through twitter's...
    LordSynth620 LordSynth620 16-17, M 3 hrs ago

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    laura ******* prepon. that is all i have to say
    grottymuffin grottymuffin 13-15, F 3 hrs ago

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    Demi Lovato, Ariana Grande, Justin Bieber, Josh Hutcherson, Jennifer Lawrence, and so much more bc I have no life
    osnapitzama osnapitzama 16-17, F 2 Responses 3 hrs ago

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    Anybody who has POTS have photophobia (sensitivity to light)? Mine is really bad and worsening. I don't know if it's another symptom of POTS or should I get checked out
    december789 december789 16-17, F 1 Response 2 hrs ago

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    I've a essay due later...and I am afraid that again I find myself agitated by its format. We are being forced to draw 6 goddamned lengthy quotes from incredibly biased articles in...
    Ewoo Ewoo 16-17 2 hrs ago

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    Im only 15 and have been: Australia New zealand Usa (florida, new york and LA) Ibiza😍 Spain France Germany Turkey Brazil My favourite was ibiza and idk why
    grac3bxo grac3bxo 13-15, F 3 Responses 2 hrs ago

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    Have to go on antidepressants to help.
    LittleBeelzebub LittleBeelzebub 18-21, F 6 Responses 2 hrs ago

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    Has anyone else had this where they jump to rage like in an instant? I have and I can't figure it out. It will be all little things. They all annoy the **** out of me sometimes...
    darkhorsek darkhorsek 26-30, F 2 hrs ago

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    Sometimes guys just cant get what others women can, like little nuances that only occur between a woman and her friend. I mean, its not like you can eyeball a hot guy and then tell...
    MissusBrightside MissusBrightside 31-35, F 2 hrs ago

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    I so badly crave my friends boyfriend he's hot and possessive and dominant and I love everything about him and my friend is a ***** to me anyways and they have only been dating for...
    cootyboo cootyboo 22-25, F 1 hr ago

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    Your scars have the power to remind you that the past was real. And that you survived it!!
    picklebobble picklebobble 46-50, M 1 hr ago

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    I dreamt of him again last night. I thought the dreams would have stopped by now. I thought my feelings were gone but I guess not... I'm digging myself in deeper than I'd like to...
    oneandonly24 oneandonly24 16-17, F 1 hr ago

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    Of course they have a story! But I like to look at scars as my trophies or tattoos.
    kamachulu kamachulu 22-25, M 1 hr ago

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