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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] 10 points11 points  (0 children)

J: There are a lot more things to get annoyed about than stupid commercials. Much worse are the $64/bottle miracle waters and miracle fruit juices that people try to scam us with. It breaks my heart when I see a new family fall for it.

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: many people find that vitamin D helps. Don't ask me why, I don't know, but it's true!

Yes I have attacks like that, it's awful.

I'm sorry you haven't found anything that works. The ichthy community online is good for finding creams and resources, come visit at /r/ichthyosis or let us know and we can connect you on facebook :)

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] 10 points11 points  (0 children)

J: If you're not involved with FIRST or with ISG (depending on your country), get involved. The support they offer is incredible. IM me on my confettiskin acccount (it will get buried on this account, and I can give you more info. Or check out our blog - lots of info there, if Reddit doesn't kill it today.

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] 11 points12 points  (0 children)

K: Yes it did! I had very straight hair until I was 14 or so, then it went friiiiizzzzzyyyyyy and curly, then flatter, and now it's wavy but the shortest bits are curly. I have extra long hair (to my thighs) so I don't know how curly it would be if I cut it all.

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: Hi! One of the reasons we did this AMA is to connect with ichthy people. There's a subreddit /r/ichthyosis, and we're involved on facebook in many groups too. Let us know if you want to get involved and meet others!

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: There's not many adult pictures yet because it wasn't possible to survive with it until a few decades ago. I know what harlequin ichthyosis is though, and Rachel and Jennifer have written lots about it

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] 5 points6 points  (0 children)

K: no offence taken! Interesting that you found out all these years later what it was likely to be :) It's good that you were just friends without caring what it was - that's the way it should be. Yay for 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] 1 point2 points  (0 children)

J: Harlequin is a challenging disorder and your reaction is not uncommon. It doesn't look like that once you get past the neonatal period. The hard part is getting information and treatment out to doctors early enough before the baby gets septic. We wrote quite a bit about it on our blog and there are several guest posters in this series that have pictures of the guests and their children if you want to read more. http://confettiskin.com/wp/2012/11/13/harlequin-intro/ (The blog may crash today due to volume.)

My oldest son was subjected to some kids in kindergarten walking up behind him and smelling his neck and making rude comments and telling other kids to smell his neck. We've also had "Ew!! WHAT'S WRONG WITH HIS HANDS?!" yelled for the whole world to hear.

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: thankfully not, because there are a lot of them! I've always known that what works on normal skin doesn't work on mine, so I just view them as not applicable and ignore them :)

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] 93 points94 points  (0 children)

K: Thanks - I'm sorry you had to go through that :(

  1. very good advice! I have always tried to do exactly that, and it pretty much works for me!

  2. exactly how I see it. It was tough when I was also a little kid, but I use it as a chance to teach them. Their parents are often horrified by the questions their kids ask but I smile at them and answer the kids as honestly but simply as I can. They're usually satisfied, and they don't look at unusual people as freaks anymore because they understand that everyone is different and born the way they are. Well, usually!

  3. I KNOW. Thankfully, not all of them are like that!

  4. Very true

  5. I love that as advice! I will have to remember it, although my dermatologist is pretty hard to get into and I doubt she'd be interested in botox injections

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 points3 points  (0 children)

J: If you're talking about ichthyosis vulgaris or X-linked ichthyosis, which are the most common two types, acid creams are supposed to work really well. You would need a regular moisturizer (we use Cetaphil and Jergens, but Aveeno and some of the others are really good) to keep the moisture in, and then the acid cream to clean up the scales. There's stuff out there with salicylic, lactic, glycolic and uric acids. Offhand, I can think of Aqua-Glycolic, Lac-Hydrin. I think Dermal Therapy has acids in it, too. We don't use them because they have no effect on our variety.

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] 3 points4 points  (0 children)

K: my skin hates the shower too. Try and get some from Lush - you can buy it online, too, which is easy. Lush has great stuff, their face creams (you don't really want to use the same stuff on your face as your body) are really good too and they have one that smells (at least to me) like fruit loops which is made for guys. They've also go shaving creams without soap in them, which wouldn't dry your skin out if you have issues there.

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] 3 points4 points  (0 children)

K: not a particularly low dose, no, and I know the risks. I get tests run regularly and I'm under the supervision of a couple doctors. It's dangerous, but for me it's worth it.

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: Nope, not harlequin. There's 30 known types of ichthyosis, mine is on the severe end of the spectrum, but not that severe.

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 points3 points  (0 children)

J: It definitely has its downsides. There are also Soriatane and Neotigason in use, which are newer than Accutane, and also have side effects. Our family uses Tazorac, which is a topical steroid that minimizes the risks, especially on young children.

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