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K: I actually wrote about what it was like growing up the other day on the confetti skin blog, here's the link: http://confettiskin.com/wp/2013/04/11/life-with-ichthyosis-judging-by-appearances/

People stare less now that I'm on medication, but I do still get weird looks. People used to stare a lot when it was more prominent. I'd get all sorts of rude comments or unsolicited advice, or criticism for being sunburned, or whatever. Looking that different, people just seem to forget their manners really fast!

I had a really bad case of Alopecia Areata for about a year and a half... I basically lost 2/3 of all of my hair (everywhere) and my head looked sort of like the moon, even if I shaved. Patches of dark, patches of light, etc.

I lost a job because of it. People would stare at me from time to time. I got married with it, in fact, and on my wedding day I had to endure a few comments about it.

A few things I learned:

1. Superficial crap like looks can go away overnight. Investing too much in your looks is mostly a huge waste of time. Exercise and eat right to be healthy and happy, not to attract people to you. Anyone that would be attracted by that is probably an idiot anyhow. Try your best to look good enough that you feel happy, don't worry about the rest.

2. Little kids are curious. Don't get mad at them if they stare/ask questions/point/whatever ... they're just kids.

3. Elderly women are sometimes the biggest douchebags on the planet. Prior to this I thought they were all sweet, little, wrinkley people that wanted to feed me pie. I still sort of think that, but they were the most annoying group, on average, that I would run into at the supermarket.

4. Most people genuinely don't give a fuck what you look like. They just want you to be nice to them and/or leave them alone anyway (even if you look perfectly normal).

5. If you have to wait a long time at the dermatologist because of all the trophy wives getting botox... just start coughing and itching A LOT... they'll all reschedule. (Eventually the doctor will start scheduling you at times when it's less busy)

TL;DR: I empathize a little, some bullshit about my life, the only good advice is in number 5 above.

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

Oh... last piece of unsolicited advice:

If you can: Find some children that have the same condition you do and volunteer with or mentor them. Sometimes there are support groups or meetups for kids with conditions like yours (or mine). It will make you feel better about yourself and your condition, and it will bring them comfort that everything is going to be okay and that they might be as cool as you are someday. (Kids always have an inflated view of adults that are cool to them)

K: I try :) There's no kids near me with it though - it's very rare. I'm involved online though, and I do my best.

R: That's part of what makes FIRST, the Foundation for Ichthyosis and Related Skin Types -- so wonderful -- and why we're very active with them.

Through FIRST, our kids have gotten to meet others with similar types of ichthyosis. And we've been able to connect with other famililes dealing with similar issues.

There is a girl at work with what I now realise must be some kind of skin condition. My initial reaction was "what an idiot, why would you get that sunburnt so often". Did not feel good about it when I realised my mistake.

K: That's true, although now that you've realised, you're in a much better position than many people who never think beyond the initial reaction :)

Yeah looking at your pictures I can barely notice anything wrong, that medication is really working!

K: Thanks! It really has been amazing. The difference it's made in my life is phenomenal, I spent 23 years with thick scales and now I can pass mostly unnoticed in society. It's great!

I'm sure the doctor has gone over it with you extensively, but I'd just like to emphasize how serious the side effects of that medication can be, even apart from birth defects. If you notice any psychological disturbances, you should absolutely talk to your doctor. It isn't worth your mind to have clear skin, no matter how relieving it must be.

K: trust me, I am aware. My family has a history of mental illness, and we're very careful. But thankyou!

J: We don't get a whole lot of stares. Our children's faces aren't that obvious and skin tone is pretty normal compared to my unaffected skin. The big thing with us is people jerking away during a handshake because our hands are really rough. And the falls...an unaffected kid might fall and get a bruise. My kid falls and ends up with a bloody mess down his arm. Yeah, that attracts attention.

ETA: Here's a pic of our family. http://imgur.com/YiveV4y

K: I'd forgotten about that - our skin is fragile, so a bruise or a light graze becomes a really big deal really fast. In my case at least though, the skin turnover is so rapid that they heal quickly

Do you find yourself being way more careful than others because of this?

J: With young kids, we don't really have a choice. Kids are prone to falling and splatting anyway. My 10yo tripped at Mickey's House at Disney World when he was 3. It was a lifted stone in the pathway. Another time, we went to see fireworks and he slid on some gravel in the parking lot. Blood everywhere. We went to Williamsburg with all 3 kids and the 4yo caught his foot on the wheel of the stroller and splatted in the gravel. At an amusement park, they overheated and we had to go find a large beverage and some water rides to cool them down. Last weekend we ended up carrying 2 of the boys for most of a mile because their feet got to the point that they couldn't walk anymore and that's how far it was to the subway station. If we aren't careful, we pay for it.

Did you have any thoughts on whether or not to have children due to the trouble you had when growing up? I'm sorry if I'm being offensive. I'm just curious.

K: I've thought long and hard about it, but I'd make the decision to do it anyway. It's hard, but it's not a death sentence, and I love being alive so why would I deprive my children of that, especially when it's not 100% going to happen? My parents had a much higher chance of conceiving another child with it, and my sister's not affected.

Thanks for a great answer.

I study genetic/inherited diseases at University and we cover the ethical issues surrounding it e.g. the choice to have children. We talk about it very scientifically, so its nice to read a true answer from someone emotionally affected.

You're welcome :) My sister studies ethics at university (philosophy minor) and we have these conversations too.

As another person who has a genetic disease and willingly had kids (all three of my kids inherited it, 50% chance my ASS!!) thank you for putting this in words so well. Life isn't guaranteed for anyone.

You're welcome, and I'm glad it made sense to/helped someone else :)

Made me cringe. Does it hurt as bad as it sounds when they do this?

K: it stings, but...well, for me anyway, kids bounce. It hurts right then but you get on with things and you're fine :)

K: in my case, not really. It heals more quickly than for normal people as well, so if I do get hurt it will heal soon. I was your normal kid and fell over and climbed trees and all of that!

So you basically have a super-power? Nice. 8)

K: I'm literally a mutant, so I've always joked that Professor X should come find me.

As a kid I thought it was really cool when my parents explained that no one else in the family had this skin disease, and that I was a generation one mutation.

K: I've always liked being a mutant too :)

So, in a way, you got wolverine's healing skin :)

R: Haha. I thought about it like that when I was a kid. The usual skin biopsy stitch removal instructions are what -- 7-10 days? They were buried under my skin within 3-4 days, I think. So, it's not insta-recovery or anything even close. Plus, it's a lot more fragile so...balance.

I can do "stupid people tricks" (or really, just be stupid) by picking up a hot pot with the palms of my hands, if I haven't filed them down. It takes a few seconds for me to feel the heat, which is sometimes enough time to nudge the pot/plate a little bit. But again, 1-2 extra seconds and not sitting there like a super hero.

Not quite the same disease, but there's a girl in my school who has harlequin ichthyosis. Most people are nice to her but there were one or two people who ran away screaming from her when they first saw her. Some people in her class like to mark her chair with tip-ex indicating that she once sat on it so that no one else will ever sit on it again.

Sometimes I go around and put tip-ex on all the chairs so that they don't know which one it is and stop being dickheads and just sit on any fucking chair.

EDIT: Thank you for the Gold!

K: you are a hero. If you were near me, I would highfive you :) People used to do that to me too, and I'm so glad someone is standing up for her.

GO YOU!

J: You are an awesome person. All the teens I know with harlequin went through hell in middle school. Thanks for the support!

they say "oooohh a snakkkkkeeeeee!!!!" xD xD

K: kids do sometimes, actually! I get a lot of 'what happened to your skin?' from curious little kids, so I carefully explain that my skin is like this just like they have blonde hair, they were born that way. They're usually happy with that answer, and it's the truth!

I was born with this skin disorder too. This is me at 4, in 1968, notice my hands.

I was miserable. My feet would split very deep, my mom would have to soak them in water to get my socks off. I couldn't even walk, I missed so much school I was held back two years. I had it all over my body. My hands would also split very deep.

Our family doctor told my mom to feed me all the fat from any meat she cooked. That's all I would get was the scraps of fat. She would feed me lard too.

After no results, the doc instructed her to slather me in Vaseline and be wrapped in plastic. I remember having to go to school with Vaseline on my feet, then plastic sandwich bags, then socks then shoes. I was always falling down because my feet were sliding around inside my shoes. I even sprained my ankle a couple times.

In Junior High I decided to run track. I did great, I was fast. During the first meet, I took off out of the blocks and I could feel the skin on my right heel split in half. I fell to the ground in pain. As you may know, for some reason there isn't much blood when this happens. But I could see my bone. Sad things is there was no way to sew it up, how could it be?

But I have great news, I grew out of it. My feet aren't nearly as bad, nothing a creole blade can't cure. My hands still look old, about a 70 y.o, but the rest of me looks much younger because my skin has "cycled" over and over, like a chemical peel. I'm 48, but I look 35ish. Also, when I was 35ish, my feet would completely clear up for some inexplicable reason, and they still do about five times a year now and stay baby smooth for about a month.

Positive side about the thickness of the skin on my feet; I could run and play barefoot on the pavement, in the woods, or on the beach like I was wearing hiking boots.

(Sorry for the errors, been up all night)

K: Thanks for sharing! I have the same thing with the thick soles on my feet. It's fantastic. I hate shoes and only wear them when in public. Your skin looks a lot like mine did at the same age.

I look younger than my age, too. It's going to be useful one day, but at 25 it's annoying to constantly be asked for ID!

Enjoy the ID thing, it'll go on for awhile.

I forgot to mention something a dermatologist asked me about 20 years ago: has your hair changed?

1-3 my hair was hard as straw, and stood straight up like static.

4-8 my hair was flat & straight.

9-16 my hair was frizzy, I even had an afro.

17-25 my hair was wavy

26-present it's Shirley Temple curly. (I hate it, so I buzz it.)

This was something the Dermatologist had noted in his other patients with this disorder.

Edit; Spelling

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.

How was high school?

K: As much fun as you can imagine! Primary/elementary was worse though in some ways, because little kids are really cruel and don't understand those who look different.

I had other issues with school too - because I can't sweat, I overheat and can get heatstroke really easily. Phys Ed in summer just didn't happen a lot of the time, and I had to spend a lot of time in the shade or inside when others were outside.

Do you have a significant other?

J: My significant other is my wife, Rachel. We've been married 13 years now.

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J: We knew it would come up sooner or later. Yes, we're married longer than gay marriage has been legal in any US state and we have biological kids together. I carried them, she's affected. I'm sure you can work out what happened.

Wait. Actually, I'm kind of confused now...

Rachel is a trans woman is my guess

R: Yup. I feel very lucky to have a supportive family, co-workers, and colleagues at FIRST and elsewhere.

I think Rachel used to be Ray. :)

R: Rey's my cousin but yes -- I changed my name. And I looked a LOT different a few years ago.

K: Not at the moment, but I have had in the past, two long term relationships (five and three years). Rachel and Jennifer are a couple :)

Fellow icthy here, male, yes school was hell. Don't even get me started on physical education. One of my bullying schoolmates suggested I use a razor blade to scrape this stuff off. Nicknames: Scales, fish, etc.

K: the nicknames are horrible :( I got lots as well. Thankfully we're well beyond that now

R: I actually DID use a sharp knife on my feet to thin things down, back when I was a kid. Jennifer saw me doing that and I've been using a Dremel (hand sander-type thing). ONLY on my feet -- that's the only part that's thick enough. And VERY carefully.

For hands, I use 100 grit nail files to smooth it out and remove some of the scale. Also use that on my elbows and knees.

Sorry to hijack the top comment. Just got and saw this and I have so many questions because I have ichthyosis as well. This is a pic I just took of my leg http://i.imgur.com/qB3StpL.jpg I've gone my whole life and never known anyone, other than my grandpa, that had it. Have you used lac-hydrin lotion? That's what I am currently prescribed. It's the only thing that I've found that works, but I haven't tried much else either.

K: I've probably tried something like it. glad it works, and nice to meet you!

R: High school was miserable. I had a few very close friends, and found solace/refuge in music and books. I was in a fairly big high school, and I had run-ins with some bullies -- they called me "stinky" and other names.

I maintain myself slightly better/differently than when I was growing up, though -- combination of experience and other factors. So, my ichthyosis was a lot more noticeable back then than now. Plus, I'm a lot more comfortable talking about myself and not taking crap from people.

Hello.

I was wondering why you decided to have kids, considering the high chance of passing the affliction on?

J: It's sort of complicated. Rachel had been misdiagnosed as a child and when we started having kids, we did it under the assumption that it was Kyriaki's type, recessive, and the chance of me carrying the gene was astronomically low. Then our son was born affected. It has taken several years to get a correct diagnosis for us, and to our knowledge, we're the only ones with this particular variety. The gene is still unknown, so any sort of IVF is impossible until that changes. Had we waited, I'd be too old to have more children. And adoption is $30,000 a pop, so it would also be difficult to do multiple times. At the end of the day, it's a life-altering condition, not a life-threatening one. Our kids will still live full lives with full capability, so why not?

I have this disease. It's sort of heinous that you'd suggest I shouldn't have kids. It's not very attractive, but it doesn't debilitate me in any significant way, my life is 98% like everyone else's. Sometimes it's a bit uncomfortable, but it doesn't cross my mind more than a couple of times a day.

K: highfive

One thing i noticed, even given everything you have said, i clicked on pictures of you, and you look so happy.

Really - that is epic....

K: Thanks! When life deals you cards like this, you basically have two choices - you let it get you down, or you fight it and decide that you're going to be yourself and happy regardless of everything. I refused to be beaten, so here I am! Life can be very difficult and I'm not at all pretending it was and is a bed of roses, but there's too much wonder and joy in life to let this get me down like that :)

That's an awesome outlook on life. Kind of reminds me of something I once heard:

"The only difference between an adventure and an ordeal is your attitude."

Very true!

How you guys manage with your SO ? Do they feel comfortable ?

Do you guys have a daily routine for your skin maintenance? In case you do what will happen if you miss the routine for one or two days ?

K: none of mine have ever really minded - one actually thought it was cool! The biggest deal is things like housekeeping - I have to sweep/vacuum a lot more often because of the rapid skin turnover.

Yes I have a routine, although I tweak it depending on the weather - how dry or humid it is has a huge impact on my skin. I can only shower a few times a week because it dries my skin out really badly, but fortunately I don't sweat very much if at all so it's less of an issue than for most people. I have a face cream and a body cream and I have to use my face cream at least every day, the body cream makes my skin look 'normal' and not dry at all. Before roaccutane, I had to use much stronger creams head to toe morning and night - they were mostly paraffin and NOT a lot of fun, and it took ages.

If I miss a day I'll just feel very tight and dry and uncomfortable, like after a bad sunburn. My skin will start flaking more and it will just generally be annoying. I keep a jar of my face cream in my tote bag for fixing that problem if I forget or if it's just really extra dry that day. Before roaccutane and especially when I was growing up, if I skipped even a morning or night on one part of my body it would crack down the 'fault lines' around the scales and the skin would split open raw at those points. Which hurts like a million paper cuts. Not fun, and having the creams put on top of that (which is the only way to help it) hurt even more because the creams have acid in them.

Hi K : Have you ever enjoyed the beach ? I guess salt water will be bad. Please correct me if i am wrong.

K: Hi! Yes I do, I love the beach.

You'd think salt water would be bad, but it's actually quite good for my skin. My parents were recommended to teach me to swim when I wasn't even able to walk yet, so that I got regular time in the chlorinated pool. Salt and chlorine and both good at killing bacteria, which are a constant issue with thick scales (especially when I was really little) so it helped to be swimming in it. Both also help the scales to lift up so that they can be scrubbed off, which makes me look a lot better and it's a lot more comfortable - the scales don't really come off and they get thicker and thicker.

I love the beach and swimming as a result! I'm Australian and our big cities are usually very close to good swimming beaches and in summer that's likely where you'll find me a lot of the time :)

Good question!

J: Salt water is supposed to work really well on most types of ichthyosis. We took the kids to Ft. Lauderdale a few years ago, and have tried using sea salt in the bathtub. I didn't notice much difference. But our type is pretty unusual, even within the rare group affected with severe types of ichthyosis. People with Kyriaki's type and several others have told me that the beach and adding salt to bath water works really well for them.

J: With my SO, day to day life is pretty much the same as anyone else. I take the brunt of physical labor because the ichthyosis causes, as Kyriaki said, the skin to dry out and crack. Any force adds to those cracks, so everything from opening a jar or soda can to turning a screwdriver to repair a toilet handle is enough to open a billion papercuts on Rachel's hands. She often cuts the grass and mops the kitchen floor and chores like that. She's not helpless, just often in pain. Mornings are the worst. She frequently has trouble walking, as do our kids. I often have to carry the boys to the shower, and we have a stepstool in the shower for them to sit on if they can't stand.

The routine is necessary. It is roughly an hour long shower every day, with much scrubbing and nail trimming and such. We use 100 grit sandpaper nail files - those big black ones the nail salons use - on the hands and a Dremel on the feet.

Missing a day generally means the boys get itchy and will literally scratch themselves raw. The skin also gets thick and turns gray and rolls off in fairly disgusting chunks when you get it wet. Their hands and feet start to look like they've been through a bramble patch after 12 hours. I don't even want to contemplate what 2 days would do.

(Whoops, replied to Kyri, not you! Fixed now.)

How old the boys are?

Edit: Grammar

R: 10 (4th grade), 7 (1st grade) and 4 (pre-K). Edit: Typo in numbers, bad.

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K: I'm itchy just thinking about it too, I'm trying to figure out what's real and what's a reaction to talking about it!

They do grow faster, so does my hair. My parents kept my nails short as a child though so I couldn't scratch, and taught me not to. My hair was a pain - I had bangs, and they were constantly growing so long I couldn't see within only a few weeks! When I was 10 years old I finally put my foot down and grew them out. My hair is all one (very, very, very long) length now which is easy :)

I've heard of Harlequin-type ichthyosis before (at least I think that's what it was) and I vaguely remember hearing that they discovered babies with this condition needed a lot more food in order to thrive because they use up so much energy just growing extra skin. Is this the case for your condition as well?

R: For me and the boys -- yes -- but not as badly as the ones with harlequin. We need (roughly) an extra cheeseburger of energy a day. Growing up I would sometimes eat a 20-piece nugget AND a Big Mac for an after-school snack.

Mostly I drink extra liquid. I've been known to down a 64-oz soda in one sitting...

Also, it's not just extra skin -- it's the water loss through the skin.

J: My kids eat like horses. My 7 year old can pack down 17 shu mai dumplings. My 10yo will eat 3 servings of spaghetti some days. They all drank from 20oz cups from age 2, and I've seen Rachel drink a half gallon in a single serving when she overheats. We added Carnation Instant Breakfast to their milk for the first 3 years to help them add calories. We still use a lot of butter and high protein things like peanut butter.

Harlequin is even more severe than what we have. Some of those kids (and we are friends with several of them) need a feeding tube because of failure to thrive. Our one buddy is almost 3 and is still about the size of a 1 yo. That's pretty typical.

K: Harlequin is one of the most famous types. Jennifer and Rachel have written about it a lot on their blog.

Yes this is the case for me - I've always eaten everything in sight but have remained very thin. It's kind of handy like that I suppose? The only real downside of it is that I get deficient in zinc very quickly (the main nutrient in our skin) and also fats and protein, so I have to eat lots of all of that.

First off - just admiring how open and willing to answer questions you guys are, which is amazing. All of the pictures are wonderful because you're smiling in all of them!

Sorry for my ignorance about it, but is this auto-immune? If so, does anything make it "flare up" worse?

Also, can you shave? What happens?

K: thanks! And smiles are good :)

Good question, but no it isn't. It's a genetic quirk. If you look at the end of my section of the OP I link to an article on how it works at least for the form of ichthyosis I have.

It CAN flare up though - the worst culprits are drying agents, especially sulfates. So I'm allergic to any liquid soap and most shampoos and conditioners, hooray! If I use those my skin will get much worse and it's really awful - it's the kind that is likely to crack.

I couldn't shave before I started roaccutane, I'd just constantly catch the scales and cut myself. It hurt. I didn't bother after the first couple attempts! Besides, with a scale pattern so obvious, I figured that the hair on my legs was the least of my worries. I can now, but I have to soak in the tub to soften my skin for a few hours first, and then I use conditioner to shave my legs very carefully, and most of the time I manage it safely.

Oh wow. I can't imagine. Roaccutane sounds like a miracle drug for you. If it's anything like accutane though (not sure if it is) it probably has some nasty side effects I'd bet.

K: It's a newer form of the same thing - and yes, the side effects are nasty. However, in my case they're well worth the trouble, as you can see!

J: No, it's a genetic condition. What Rachel and the boys have is dominant, and Kyriaki's type is recessive.

Rachel's type is a spontaneous mutation before her birth. Her parents are not affected. We had a 50/50 chance with each child, and got ichthyosis all 3 times.

Kyriaki's parents are carriers of a mutation in the same gene. They are not affected becuase they have one working copy. But Kyriaki got 2 mutations, so has ichthyosis.

Shaving doesn't apply to me, as I'm not affected, but I can assert that Rachel shaves just fine.

R: No problems shaving for me whatsoever.

I just opened this thread with "Embarrassing Bodies" on the TV, and suddenly they've got two girls on it with ichthyosis. Whaaaaaaat!

No real questions, as I have none. Just one of those things that are weird that I thought I'd mention.

K: Hahaha I love coincidences like that. I hope you can learn something from either the TV or here or both :) It's so good now that information is starting to get out there, there was none when I was born really and my parents had to do some pretty serious (university level) searching to find out much of anything after my diagnosis.

<sigh>

This is an abuse report concerning your Shared Hosting account with A Small Orange:

Abuse Type: CPU/Memory/Resource Abuse

Due to the amount of traffic going to your website we have needed to temporarily suspend the account. You can see below that there were multiple scripts under your account that were using more than 40% of the CPU resources on the server and causing a high load on the server. The amount of traffic was also causing Apache to hit it's max clients limit. You will need to find a way to reduce the traffic to this account and/or optimize the site with caching and other methods in order to reduce the resource usage for this account.

Guh.

Thank you for doing this and putting it out there for people to learn more about. You're incredibly brave and beautiful!

K: thankyou!

Hello from Scotland.

I also suffer from ichthyosis, albeit a little less than you. I have a question for you, how does your skin react to not just being moisturised but increased sunlight & vitamin d??

Living in Scotland, the weather outside is never good and during winter it can get extremely dry. However, during the summer months, my skin is less tight and it really shows. What really amazes me though is when I go away on holiday...

My ichthyosis is patchy in parts, specially on my arms. The inside of my elbow, about 2-3 inches up, and a strip down to my wrist is absolutely flawless. Yes it's dry but no excess build up of skin or splitting. Whenever I go away on holiday abroad, after a few weeks of intense sun and moisture, it's like the ichthyosis 'falls' off and my skin all over shows no splitting and looks 'normal'

Have you ever experienced anything like this?

A few minor ones.....how often do you shower? Do you moisturise everyday regardless of if you shower everyday?

Finally, i just wanted to say hello from a fellow sufferer.

K: I love summer. My skin gets so much better in summer! I find that summer makes it look much better, although it doesn't 'fix' it.

I shower once or twice a week. Because I don't sweat much it's not really an issue, and the shower dries my skin out too badly otherwise. Yes I keep up with the moisturisers, but less on days where I haven't had a shower or been swimming.

And hello back! Nice to meet you :)

What are a couple of your favorite movies?

J: Mostly sci-fi/fantasy stuff: LoTR, Serenity, The Princess Bride, but also Apollo 13 and Amadeus and musicals like The Producers. I'm a big Buffy and Dr. Who fan.

R: I am a child of the 80's. Empire Strikes Back. LoTR for recent-ish stuff.

K: The Princess Bride, The Avengers, Ever After, Across the Universe.

I wholeheartedly approve of your list, some great choices!

And may I say, I usually never hear people pick Ever After. I freaking LOVE that movie, thought it did pretty well, and yet for some reason it seems fairly obscure.

I love it! I saw it for the first time on the flight from LA to Sydney when I was 10 and fell in love, and I think it's great :)

Excuse my ignorance but I searched ichthyosis on google and saw really graphic pictures of babies. Is there different degrees to how bad it can be?

K: Yes. There are 30 different kinds, and they range from very mild to life threatening without proper care. The most graphic pictures online are usually for shock value, and they're often babies with harlequin ichthyosis, the most severe form. Happily, medical care has come a long way and many of these children are happy and healthy even with such a severe form :)

You guys. Thank you so much. My nephew has severe Ichthyosis, and his older sister actually passed away from complications due to the condition when she was three months old. He's seven, and the other kids at school are starting to notice he's different and they are harassing him about it. His mother and I are always on the lookout for stories and groups and whatever to show the little guy so he doesn't feel quite so different. I'm going to show this thread to his mom and I'm sure it's going to help. Again, thanks.

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.

Just dropping by a line to vouch for K as I'm the SO of a rl friend and to say what a small freaking world it is to wake up, check reddit and go "hey honey your friend is doing an AMA."

If I were to ask a question it'd be along the lines of: With your condition and living in Australia (where reddit knows all wildlife to be out to kill and/or maim), would you think ah screw it I'm better off inside anyways.

K: HIII! I know who you are! Lovely to see you.

Nope - in Australia we're bred tough. It's just foreigners who have to watch out for the drop bears ;)

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We're aware and trying to fix it. Thanks!

can you get a heat stroke if you have sex?

K: If it was very very hot, yes. But to be honest, if it was hot enough for that to be an issue, it'd be too hot to care. I'd rather go swimming or lie under the air conditioner.

Most of the time it wouldn't be an issue overheating-wise.

J: It hasn't happened yet here. Maybe if we tried on a 100+ degree day in July out on the roof...but heat stroke would happen from just sitting there doing nothing, too.

You guys are awesome and beautiful. Hope you live a long and happy life.

Thankyou, and the same to you!

Why are you guys so awesome?

J: It's the horse-sized duck we're riding. =)

It's the mutant in me! :D

When watching tv and a commercial for a skin moisturiser comes on, that says that all you need to do for smooth skin is buy their product and apply it, does that piss you off?

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.

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 :)

You guys mention that you are prone to zinc deficiencies and need to eat quite a bit of fats and the like due to the condition. What's your typical daily diet for yourselves and the kids?

K: I eat a bit of everything and always have. Breakfast tends to be something carb-ish, lots of milk in things through the day. I eat a lot of meat salads, burgers, chicken sandwiches etc. I love fruit smoothies, again with dairy. I love cheeseburgers which is good because the fats in them are good for me! Dinner is often pasta or something with plenty of vegetables and meat, although I eat fish a few times a week as well. Lots of beans and other protein, avocados...if I find myself craving something (which is often a vegetable, weirdly!) I usually need it, so I eat it :)

... I think I knew a guy with this condition in high school but he never mentioned it to me. We were good mates for >5 years, he had the exact same sort of colour/pattern skin on his arms, we just never talked about it. I just assumed it was some kind of deal he had.

It's bizarre reading this now, many years later, and remembering. I forgot he even had this skin thing until I saw the photographs you've posted (no offense intended, sorry!).

Blast from the past. Strikes me this comment is somewhat inane. I guess, it proves that it can be a totally forgettable if you're an otherwise awesome person? Nothing but fond memories about my friend.

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!

If you can't sweat...how...I can't even think how to word this without sounding like an arse. Dogs panting is their sweating, right? What is your equivalent? No disrespect. (I'm an arse)

K: not an arse, a good question. I never find intelligent questions rude. I stay inside a lot, drink a LOT of water, but the best trick I have is to wear a spaghetti strap top and tight shorts (the minimum possible) and then long sleeved cotton clothes over the top - cheap cotton shirt and loose pants, and a cotton scarf/shawl. I soak all the top layer clothes in cold water and then wring them out to be just damp, and put them on wet. Same effect, and really helpful! Scarf goes around my neck at the back or even up over my head and shoulders if I'm outside. I've even taught normal people that trick for really hot weather, it works! The bottom layer is because they have a tendency to go see through!

There's also points where it's most effective to cool yourself or another down on the inside of your wrists, thighs, face, chest, etc. So I get those bits under cold water to cool myself down.

The funniest thing I do is the same as my grandma (who also can't sweat, it might be related but we don't know) - drink really hot tea, because it heats you up inside and makes the outside seem cooler in comparison. Don't ask me why but it works...

Good morning everyone!

J: Good morning to you, too!

K: good morning!

I have a relative who has psoriasis, I see some of the symptoms (high skin turnover rate, scarce sweating, skin growing scales, and cracking between them, etc) and the overall aspect is very similar. Do you know if the conditions are somewhat related? I believe both condition's treatments are focused only on the symptoms, since they can't be cured, am I right? If this is true, what worked best for you? For over 20 years doctors failed to give this relative of mine a treatment that would help, just lots of corticosteroids that essentially destroyed her liver, so any advice is most appreciated.

Ps: I read your prior AMA; it's nice to see you keep getting better!

J: WebMD says that psoriasis is an autoimmune problem. http://www.webmd.com/skin-problems-and-treatments/psoriasis-treatment-11/causes

So basically, it's treating you as an infection and attacking you. Ichthyosis is 100% genetic mutation, although the treatments overlap a lot due to the hyperproliferation in both disorders.

K: I have no idea, to be honest! I think that the causes are different, but the symptoms are similar, but I might be wrong. Jennifer and Rachel would know more.

And thanks for remembering me!

Girls - my sister has lamellar! (Though from the pictures it seems hers is more severe than yours.) Thanks for bringing some positive attention to our community.

Edit: Ladies* sorry, didn't realize your ages at first.

K: you're welcome! there's a subreddit here /r/ichthyosis, and there's lots of groups on facebook if she's interested in finding others :)

J: have her email me on our blog or find us on Facebook.

We have no idea why one person with LI is more severe than another. One of the research projects right now is to figure that out. I can pass along the researcher's name and contact info if she likes.

Kyriaki, I think I may have been a few years bellow you in high school? If not, I could be thinking of someone with a similar condition who looks very much like you! Australia is a big country haha. Nevertheless, nice to learn about it :) never knew why the person I'm thinking of was that way.

K: If the initials of the school were CC, then you're right. Otherwise, there's a few of us around and Australia is a big country.

And I'm glad you got the chance to find out!

Yep, correct initials, small world! :) I never had a chance to actually meet you being a few years younger but nice to know how great you've coped and also how well you look, I think I would have struggled in your situation but you look very happy :)

Very small world! Thanks very much :)

Have you seen "the singing detective"? Amazing series and how i learnt about you condition. All the best!

K: No I haven't, but I'll have to look it up! Thanks!

I got psoriasis, I'm scaley too. Woo.

K: Yay scales! Fish people of the world unite!

Can the skin heal at the same rate as non affected skin from a laceration?

J: Rachel has had stitches several times for biopsies while we were trying to work out our diagnosis, and the doctors always said to leave them in for 7 days before coming back to be removed. By day 3, the skin was always growing over them and I had to remove them so they didn't get completely buried. The skin growth rate is incredible.

Also, when the boys get injured, even a deep bleeding injury is completely gone in a week, and a shallow scrape is gone in 2-3 days.

K: yes, in fact it often heals faster because the turnover and growth is so much higher

I always thought that i was the only one with this typ of skin. Woow

K: Nope! there's lots of us, we just don't connect as much as we should :)

Yeah true that. I have a lighter version.not that extreme. I was always trying to find a cure, never found one. After 9001 skin lotions i gave up.

K: Everyone's different, but I have found that the cream Lush makes for eczema is really good - Dream Cream. Try a sample maybe? It's not a cure, but it does work wonders even on my skin without roaccutane!

J: We actually started a subreddit to help make connections. Not too many people have found it yet, though. /r/ichthyosis

There are also active groups on Facebook and there's a forum on ichthyosis.com, but it's sort of dead now after going strong for the last 13 years. Facebook is trying hard to kill it. We started our blog because Facebook isn't searchable.

Just wanted to chime in Kyriaki, I saw your photo and you are beautiful. You are obviously awesome inside and out.

thankyou!

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K: Yes, that's post roaccutane - it was taken the other day and I've been on it for almost a year now. It makes a huge difference! My skin is a bit dry at the moment despite it because of the weather though. Thankyou for the compliment.

As long as people are careful with me and not too rough on my skin, I'm fine :)

Hey ladies!

So how hereditary is it this condition?

Is the any kind of research going on for treatment/cures?

Is there any serious health issues that comes along with this?

What about your condition do you find the most hindering in life?

K: Hello! It's hereditary, the different types seem to have greater or lesser rates of it being passed on. My type is recessive, so I would have to have my partner be a carrier or affected for it to be an issue, and then there's a certain percentage. I'm the eldest child of my family and my parents knew the risks when they chose to have my sister - and she's not affected.

Yes there's research going on, FIRST (linked in the OP) is doing a lot of good work there. I've participated in some research studies at the National Institute of Health in the USA.

Health issues vary depending on the person. One major issue is infection - if your skin is this fragile it's easy to get infected. Antibiotics are important for us! We tend to get zinc deficient, mobility can be an issue, heatstroke risk, some digestive issues (usually nutrient absorption problems).

I think the biggest hindrance has really been people's attitudes. I can do most things most of the time, the only things I have issues with are thing like washing dishes because I can't touch dish soap, and latex gloves aren't great either, but I have cotton lined gloves that I can use. We adapt!

What about your sexual organs, does it affect the skin there? Not trying to be rude, but I'm just wondering if it causes pain, or if it's not an issue.

K: not an issue for me, thankfully. It's different for everyone

What clothes do you wear? Is there anything close to a cure?

K: I wear normal clothes most of the time - what you can see up there in the photos. Synthetics are usually not breathable and they can be incredibly itchy (nylons are my enemies), so I tend to wear a lot of cottons in summer. With roaccutane I'm very sun-sensitive, so I wear long sleeves a lot (like in the photo for proof I put up) and long skirts in summer. I love pretty clothes, I also wear jeans and a tshirt a lot of the time like any other college student (I'm 25)

Do you find that you get sick more often? Does it take you longer to recover?

K: not as a result of ichthyosis. I do get cold more easily though through lack of efficient insulation in my skin and lack of body fat (most of it goes into making my skin) which is risky, but I just wear an extra sweater!

Not a question, but....

I think you're really cute.

Good luck.

That is all.

K: aw, thanks!

Is it possible to have smaller outbreaks of this condition? When I was younger a couple of my fingers would break out with something similar you have. At one point even my forearms had it but nowhere else on my body

K: there are different forms, ichthyosis vulgaris is sometimes patchy like that. Eczema can also look very similar.

We've recently learned about diseases and disorders in Biology, including harlequin ichthyosis. Many of the kids reacted horribly and even I, with a strong stomach, still had trouble looking at it.

I don't want to bring up bad memories, but has anyone ever discriminated you or made fun of you for it? And if they did, what did they say?

K: yes they have. I've been called all sorts of things, mostly allusions to reptiles, snakes or fish. The skin also flakes off which grosses kids (and some adults) out. Harlequin babies can be difficult to look at sometimes, but they grow up to be really cute - there's a darling girl named Brenna who has Harlequin and her mother has a blog called Blessed by Brenna which is worth looking at - she's adorable!

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.

As someone who suffers from severe psoriasis, I feel like I understand a little what it's like.

Have you found that diet adjustments help the condition at all? I've heard pretty crazy claims...

K: Only in that my skin grows happier with good fats and oils in my diet. Avocados, fish, plenty of meat, olive oil...

I've heard all the crazy claims too and I treat them with the disdain they deserve.

Hi! Much love and support for you. I wanted to ask , doesn't the roaccutane cause a skin to go dry and painful for you? I've experienced this medicine due to a sever acne in the past and the dehydration was anything but comforting , so how does it work for you ?

K: It seems to work mostly in reverse for me - it makes my skin not go as dry. My lips go more dry and that is NOT fun, but otherwise the dehydration is less of an issue than it would be normally, since dehydrated is 'normal' for me on or off the drugs because my skin loses so much water

You look pretty normal to me... I was expecting harlequin ichthyosis, and was relieved for you.

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

Kyriaki are you left handed?

No, why do you ask?

Accutane is a very potent drug and usually people only use it for up to 8 months at a time. Are you on a very low dose, or will you take breaks from it from time to time? It just strikes me as potentially dangerous. But I imagine it does have wonderful benefits for you.

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.

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.

This is one of the best AMAs I've seen in a long time, thank you!

Are there specific types of clothes or fabrics you can't wear? How is dressing different?

K: THANKS! It's been a lot of fun to do, too!

I can't stand pure synthetics - they itch me more than normal people. Nylons are horrible. If I could afford silk hosiery that's what I'd wear, in the meantime I either go without or I wear cotton blend everything if it's winter. Other than that, I just make sure that I wear breathable fabrics in summer, long and loose like in my 'proof' picture much of the time because it makes it more comfortable since I can't sweat to keep myself cool.

Other than that I'm normal apart from the fact that I like to make my own clothes, but I do that for fun not because I have to. I wear jeans and tshirts and dresses like a normal person :)

Hi! Thanks so much for doing this AMA. This must of been a really challenging when you guys were kids. Do you have any recollection of how that was? And Rachel, since you have children of your own, how do you explain what's going on to them? Was it hard to maintain the care that you needed when you were younger?

J: Rachel is likely on the train to work and will be back with us later, but I didn't want this to get neglected. The kids pretty much know what they have and it has caused them to learn a lot about physiology and genetics at a young age. The other fascinating thing is that we are watching them become empathetic young people that are considerate of others' disabilities.

K: Yes I do, and it was tough. Painful, and kids were cruel. But it toughened me up in many ways which is good in the long run if nasty at the time.

My parents were wonderful in their care - they did my creams head to toe until I was 8 or 9, at which point I took over doing them myself (sitting on a big cloth playmat to protect the floor, the creams stained and I was a kid) except for my face which my parents did until I was 12 or so and could manage to do with the help of a mirror without getting it all over my hair. I've been able to do my face creams without a mirror since I was about 14.

What is the significance of the cross-like necklace in the snake picture? I'v never seen one like that before.

K: it's a cross - I'm an Orthodox Christian. We use a lot of more unusual crosses, the most common one is the three bar cross used by Russians. Mine has two bars - the top bar symbolises the sign that was nailed to Christ's cross proclaiming him King of the Jews in three languages. I'm rather fond of it and never take it off :)

just a fellow ichthyosis suffering sounding off.

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!

I believe myself have the same condition, but what I have noticed is that my skin gets better during the summers when I am out in the sun a lot, don't know if mine is less sever.

*Do you get kind of like attacks were it feels like a "indian-burn"x10 all over your body sometimes?

Have not until now recently found actual product that work for my skin and that's after 20 years. I to have felt the insecurities of this condition and hope to one day be more confident about it, have always been able to laugh about it but you always feel a bit weird during the summers while at the beach. Hope you are well and have a fulfilling life.

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 :)

Hi there! My fraternal twin and I (but not my other brother) both have similar kinds of skin that seem like a lighter form of ichthyosis. We have never actually been to a dermatologist but we both suffer from particularly scaly skin on the legs as well as very dry skin all over. We try to use moisturizers frequently but I find that after a few hours my skin is just as dry as ever and it annoys me that there is no satisfactory solution. Do you have any suggestion on what advice we should seek or particular moisturisers that work well for this kind of skin? EDIT: We also have very wrinkly hands and feet

K: if you live somewhere with Lush cosmetics/bath stuff/whatever, they do an amazing cream called Dream Cream which has a lot of different kinds of oils in it, all of which work together. It's seriously saved my sanity many times, because normal moisturisers don't work. Rachel would have her own favourite, I am sure :)

Thanks! I think that does exist around where I live. So far the best thing I have found is E45 moisturising shower wash. My skin doesn't dry up like it does after any other product. I also make sure to use a moisturiser and then something waxy like Burt's Bees for my hands as they get really badly irritant after getting wet.

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.

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.

I have psoriasis so I know where you're coming from. My question is, how has your condition shaped your personality? If at all.

K: I don't know - how can I know who I would have been without it? It has made me stronger and less likely to care what people think of me superficially at least. And it's made me an optimist from necessity - you either give in or you fight and be joyful DESPITE it all. I like being me, despite everything!

Do cuts and scratches heal faster because of the faster skin turnover rate? If it does you could call it a superpower.

K: Yep! And yes I do! :)

Have you ever experienced bad side effects from Roaccutane? I had to take it as a teenager because I had severe acne which was at risk of permanent scarring but was taken off it after 2 months as (I believe) from a direct result from the medication I got severe depression from which I still suffer from today.

K: some, but thankfully the depression hasn't been severe at least. Most of my side effects are things like incredibly dry lips and that sort of thing.

Not a cure, but olive oil is king on skin.

J: Olive oil doesn't even make a dent on us.

K: my favourite cream has olive oil in it, as well as cocoa and shea butters. Great stuff!

You just look really dry, it's not that bad.

K: If you look closely at the older photos you can see dark patterning particularly on my arms and chest - those are thick scales. Up close it looks a lot worse, but for obvious reasons I tried to make it look as normal/good as possible

J: It looks that good because we spend lots of time taking care of it.

My heel looks like that one picture you posted. My calfs also have patches of dry and scaley skin. Now that I think about it, I also have dry patches on my forearms.

If you don't mind I am going to spend the rest of the day stressing out and living in terror because I am now sure I got what ever you folks have.

Fuck me rite?

J: If it's not anywhere else but your heels, it's probably a pretty common variety called ichthyosis vulgaris. There are actually more than 30 types of ichthyosis.

K: Well, you can't catch it, so don't worry about that. And if those are your symptoms, they're not likely to develop into anything like what we have - our skin has been this severe since birth. So don't worry! If you want to find out more about ichthyosis though there's some great resources out there, Jennifer and Rachel can help you out :)

Why did you feel it necessary to pass this genetic defect on to your children? Why not take steps to prevent that? I'm a parent, and it seems incredibly selfish to me to condemn your offspring to this, especially since you have firsthand experience of how cruel it can be growing up "different".

K: I'm not a parent yet, but the flip side of your argument is that by accepting that we are condemning ourselves as freaks. Our lives are different, but not impossible, and I'm glad my parents chose to have me even being affected like this.

Srrious qeshun, Do u eat ur skin wen it falls off? Is it salty? Delicious?

Do you feel a connection to reptiles and/or cicadas?

I like ur teefers.

K: Did you see the picture of me with the snake? I said it must know we're kin ;)

If I was a snake or reptile it'd be a lot easier, they shed all at once. Not that easy for me!