I have a mild case of ichthyosis vulgaris paired with keratosis pilaris and up untill I was 18 I didn't know that it was this exact skin condition. We always assumed it was diathesis or just a part of my many allergies and I regret that I hadn't found out earlier. Because it's a genetic condition it can't be cured but it can be treated to ease the symptoms of it. What is happening, is that the upper layers of skin sells that normally die, get washed off in shower and replaced with newer skin sells do NOT separate from the body. So the layers of dead skin sells just pile up and create those "scales", preventing normal functioning of skin. The problem is, and some people do not understand this, that cause of this is a mutated gene and problems are not only on the outside but on the inside as well. It is NOT purely cosmetic. One of the most notable downsides is poor temperature control of the body and easy dehydrating. I always feel terrible after flights (the air is so dry one the plane) or just leaving the bath, it's like I'm all dried up from inside and ready to keel over. And of course there's psychological side to this as well. That kind of skin just doesn't look good, you know? It's thick and weird and flakey. Usually, I wear short sleeves only in summer when symptoms get better and I haven't put on a swimsuit in 3 years. When I was in gym class people sometimes asked "what IS this?" and I always did my best to reassure that "it's just super dry" and "it's NOT contagious, I've got this from birth" It really doesn't help a girl's self-esteem, you know? And I can't use any makeup besides lips and mascara because everything else just flakes off or just looks horrible. The other big problem is blemishes. I can't properly clean my skin because all even super "non-dryng" anti-pimples and anti-black spots products dry out and irritate my skin like all hell. The saddest thing, most of the time I just don't know what to do with my skin except pouring tons of moisturising creams all over it. My dermatologist just said "It's not extreme so we won't do much with it" and prescribed me vitamin E&A and expensive cream and that's it. But I want to TREAT it, you know? I want to get better.
@annlize123
11 жыл бұрын
My ex boyfriend had itchyosis before i met him i never knew that this disease even existed , but it makes me mad how some people use to look down on him :(
@keirabarnes9667
11 жыл бұрын
I feel you dude, no one in my state even knew what it was. I had to be flown to Boston almost the minute I was born. I've never met anyone else with this condition, & if anyone would like to talk, feel free :)
@joshuanut55
12 жыл бұрын
Man, wish I had a support group for somthing like this when I was a kid. I was bullied in middle-school and know and "flakes" for the shedding of skin problems I had as a kid.
@firstskinfoundation
11 жыл бұрын
Thank you for asking. We would suggest that your cousin's dermatologist upload the case to FIRST's Tele-ichthyosis site. FIRST's knowledgeable medical professionals can provide input for your cousin to help with a diagnosis. To access the teleichthyosis link, visit FIRST's website found in the video, and click on Medical Professionals. The tele-ichthyosis link is the first link. Thank you.
@tarashaw3077
10 жыл бұрын
Are the babies that are born with the harlequin type in as much pain as it looks like they would?
@hang1iderswing
11 жыл бұрын
This, thank you. I think de-stigmatizing diseases is something we should focus on more as a culture.
@candyfloss362
14 жыл бұрын
im glad this was on my recommendations im sick 2 the back teeth with video comments on the baby with this conditon Ryan Gonzalez comments like ''put it out of its misery', it will never survive,look at that alien'' that sort of thing. i continuesly explain wot this condition is & its possible 2 survive & 2 live a normal life (what ever normal is) in future i will recommend this 2 people so they can understand. the more people that understand the less likely people stare or poke fun(i hope)
@listay1
11 жыл бұрын
If you click on the video link associated to firstskinfoundation· One of their 13 videos is called "The FIRST Story-Part 2" that's the second part of it. :)
@naurbrannon
12 жыл бұрын
...where is part 2?
@TheFutureIsHere111
11 жыл бұрын
Yep, 'nuff said
@firstskinfoundation
11 жыл бұрын
Yes, ichthyosis is genetic. The genetics of each type of ichthyosis are different. Some are recessive, some are dominant, and others are spontaneous.
@janefontein3964
11 жыл бұрын
Before I heard them pronounce ıcthyosıs I thought ıt was pronounced lıke ıtch. I thought wow, that sounds lıke an aptly named dısease.
@somewhatcensored
11 жыл бұрын
Hi, I was wondering if someone could explain the difference between eczema and ichthyosis? My cousin was diagnosed with eczema when he was quite young. Basically he has dry, very itchy skin. And it can get very severe; he stays up at night itching sometimes. The cracks in his skin can get pretty deep and painful sometimes as well. I was wondering if it was possibly he could have a type of ichthyosis? I appreciate you posting this. Thank you! :)
@omarkhan7554
11 жыл бұрын
i have itchyosis x linked but it is not as much as the others have like i have it but really less but i still have it
@vickyalvarez5156
11 жыл бұрын
hola yo tengo 2 hijos con ichthyosis uno de 8 anos y el otro de 4 como me comunico con ustedes?
@prudence8277
11 жыл бұрын
does it hurt the body? do the skin peels off it self
@Flankoful
11 жыл бұрын
You should change the music.
@Nudeity
11 жыл бұрын
Is it hereditary?
@firstskinfoundation
11 жыл бұрын
Hola Vicki, puede comunicarse con nuestro Director de Programas, Moureen Wenik en mwenik (at) firstskinfoundation (dot) org. Ella estará encantado de proporcionarle toda la información que usted busca.
@deadlymassacre1
14 жыл бұрын
@Romarinho89 I thought you meant to spell threatened, i was like wtf
@Romarinho89
14 жыл бұрын
people with ichthyosis are humans and should be threated like humans and should not been made fun of and mocked in KZitem videos .
@lollylalli9555
12 жыл бұрын
im sorry this happened to u :'(
@lukewilson1734
11 жыл бұрын
More human then You or me to be honest
@sydneyknight2945
11 жыл бұрын
omg i feel really bad for dem
@cuppajoesugar
12 жыл бұрын
This is an informative video but who thought it'd be a good idea to play cheesy feel-good music over people describing their rather painful condition
@AlterNateHeaDacHe
14 жыл бұрын
This is the worst choice of music ever! Like it's goddamn TV Shop or some cooking show.
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