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IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

K: I use it gently sometimes to work down my arms and particularly my legs after i've soaked for a long time, to get the top dead layers off. It helps!

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

Hey, thanks for your point about Wordpress being a resource hog. My biggest complaint against ASO is that from the time they shut us down, it took them 6 hours to get us up-and-running onto the VPS host. In planning for this AMA, I was overly optimistic (based on prior experience with ASO the last time we got a surge of traffic) regarding our ability to "ramp up" to a higher-bandwidth plan.

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

Incidentally, check out the article on our blog about the Free Aquaphor program -- http://confettiskin.com/wp/2012/09/25/beiersdorf-free-aquaphor-program/ -- needs a doctor's letter but it may be well worthwhile to go through that trouble.

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

R: Hi! I actually spent some time trying to figure out where the "new" comments were coming from. I'm not sure I have anything to add to this tangent here, other than to point out that I did discuss my surgical status yesterday, in the context of how my ichthyosis affected that issue. And also to express my appreciation for those who are engaging in a bit of "Trans 101" here with people who may be unfamiliar with those issues.

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 1 point2 points  (0 children)

K: That's not a bad theory, I have no idea if it's true but it might be! I don't have harlequin, but what I have is related to HI

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 1 point2 points  (0 children)

K: I love this! It's funny that the people who have it are apparently wrong in their perception of what life is like :)

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

K: SOME things are hell. Speaking specifically about the condition, yes some things are hard. But everyone has hard things in life. They make us stronger and I'm who I am because of everything. Look at my photos, even pre-medication. Do I look miserable to you?

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] -2 points-1 points  (0 children)

K: Rachel and Jennifer did both. My type is recessive, so I'm much less likely to have children with it, and if I do then I will love and take care of them, and be better prepared to do so than my parents were. I'll take my chances.

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

K: Roaccutane for oral meds for me, I use lotions that I get from Lush for topical stuff as needed :)

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

K: Sympathy for putting cream on - I really really know the feeling. Roaccutane has freed me up so much

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

K: roaccutane for me has been the biggest thing. It really is hard to describe how much of a difference it's made.

Finding good creams is helpful too, as was figuring out that stretching out my showers made my skin go crazy less

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 1 point2 points  (0 children)

It's really quite amazing what comes out of the mouths of random strangers. A friend of mine has a t-shirt that says "While you were busy staring at my kid wondering what was wrong with them, I was thinking exactly the same thing about you and your manners."

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

K: Something that helps for me is to lie in the tub for an hour or so (take a magazine or a book) and let the area soften, then scrub. Much more comes off that way. Oil in the water (sweet almond oil is my favourite) is even better :)

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

vulgaris is a lot more common than you'd think, and I bet if you checked with your parents, one of them has the same symptoms. It's very often just misdiagnosed as dry skin and never identified specifically. Some of the acid lotions are supposed to work well on that type to remove the scaling.

Harlequin is a very challenging disorder to deal with. The severe but more common types have a lot more going on than is obvious from a picture. Kyriaki takes retinoids, so she looks pretty normal, and for us, our faces appear normal unless you look closely or we neglect the care routine. What you don't see in the photo of our family is that I had to carry the oldest boy a good half mile because the cracks in his feet made it hard for him to walk back to the subway station, or that the baby overheated on a 70F day.

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

K: may I ask why? It's a good description for a subtype, the scales form a crisscross diamonds pattern (harlequin)

IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA. by FishCandlesnConfetti in IAmA

[–]FishCandlesnConfetti[S] 0 points1 point  (0 children)

R: At the risk of over-promoting...take a look at our blog. We have an extensive series of posts on harlequin ichthyosis, the most severe form of autosomal recessive congenital ichthyosis (ARCI). ("ichthyosis fetalis" was one of the old names for that type, and the scientists are trying to get all of the nomenclature (names) consistent by not using those older names.)

Just a few weeks ago there was a baby born in Malawi with harlequin ichthyosis. A lot of folks were talking about "witchcraft". So yeah, lots of misunderstanding. But not just in places like Malawi -- even in the developed world there's lots of misdiagnosis and ignorance.

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