IamA 19 Year Old With a rare Skin Condition Called Epidermolytic Hyperkeratosis! AMA!

Woah dude haven't seen you since highschool. How are things? If you can guess who this is ill mouth kiss you.

Mouth Kiss me Robby.

Ass to Mouth Kiss me.

Let me poop in your butthole while you poop into mine and we'll go back and forth forever

Like an Alaskan pipeline of sorts.

Jesus the best friend levels here are at an all time high

We're all friends in the skin condition thread.

I want to get off Mr. Epidermis' wild ride.

Oh your only on the first loop.

It's all about being a good OP.

And demanding tributes from your subordinates...

Has this affected your fingerprints?

Yep! My fingerprints are always damaged and often times unrecognizable.

People always say "Dude you can commit the perfect crime." Except for the one minor technicality that I'd leave behind more skin cells than a ginger in the Arizona sun.

As a ginger who's a Phoenix native, I can sympathize.

You poor soul.

What soul

That was slick.

I'm a ginger. I have many souls. Muahaha

You have many LIES.

They say that every freckle on a gingers body marks a soul they've stolen.

This bitch is literally satan.

Wear a full body suit and you can get a special name like The Hazmat Bandit, or The Bondage Bandit (in the case that you pick a gimp suit).

Im pretty sure anyone who buys either of those brand new gets put on a list, and Im not exactly about to get one second-hand. Lol

I've had extreme psoriasis since the day I was born. Covers the majority of my body besides my face. I play sports and am very social but I've lost friends and girlfriends because they don't really get it. What social effects has it had on you?

Edit: have had a lot of different questions relating to psoriasis. My inbox is open to anyone!

It was extremely difficult making friends early on in childhood. It took me til 9th to 10th grade to find a group of friends who I could really bond with and things of that sort. I didn't get my first girlfriend until I was sixteen which felt pretty late.

But on a side note: my condolences man. It can be rough having a problem that effects the outside, which in turn, effects us emotionally. It's hard to get the social stigma, especially at a young age, of purely looking different. If later in life you have the opportunity to change states then I'd make a move to Arizona. The Climate REALLY helps most skin conditions like psoriasis and eczema.

"didnt get my first girlfriend till i was sixteen and that felt pretty late"

well shit

Guys guys guys.

Its ok. She was a bitch

I am 28 and still have had only 1 date in my entire life.

EDIT: And that one date was just a couple months ago.

YOU NEED CONFIDENCE MY FRIEND

I have confidence I just need to get out and ask a girl out is all.

I did it the other week, granted she blew me off, but hey she was hot and i worked myself up enough to do it.

Sounds like we had an identical situation going through school. Canadian winters are the absolute worst for it. Whenever I travel I clear up but come home and BOOM lizard lyfe again.

Glad to hear you have a good head on your shoulders. I'm 18 and it's been the last year or so I've finally gotten over hiding it. Life's to short to wear a sweater all year round haha.

Exactly what I said. 17 rolled around and I went on full force fuck it mode.

Really? Wouldn't it just be drier and hotter down there?

Dryness actually helps it. As long as it's hot dryness. It makes your body naturally moisten up from sweating.

Does this disease give you any special abilities? making you The Human Callus

funny you mention that. I can hold onto stuff that most people can't touch for even half a second. That's why Im such a good dishwasher at my work lol.

Username checks out

Til the day I die.

Your hero?

Holy shit he is now.

Til the day someone finds a dead skin cell in their pasta

You mean someone finds parmesan cheese in their pasta?

http://i.imgur.com/t1AL7HT.gif

Last week you held a bunch of burning hot coals for like 15 seconds.

Burning hot coals

Burning hot pretzels FTFY

Burning hot babes*.

Armenians don't count.

No way. He's the next Killer Croc.

http://youtu.be/l21HLncmHGU?t=5m3s

This has actually been used as an insult before lmao

That's fucked up.

That episode in Gotham Knight is just the only popular culture reference I've ever heard to EHK.

I've heard it all my friend.

But that's insane. I've never heard anyone say it before.

Ever. Especially not in popular fiction.

What was your experience like as a kid in social settings? Kids can either be brutal or totally understanding... any stories that stick out in your memory?

4th through 8th grade were honestly some of the most brutal years of my life. A huge part was because the condition gets 3x worse while in the early-middle stages of puberty. On top of this, if the condition gets to thick it starts to produce a foul odor because of the bacteria living in the nooks and crannies of my skin, which is difficult to mask. So I had two things against me: Looks and smell lol.

I will always remember Victor from seventh grade. Ruthless little kid who berated me everyday in class, sometimes even getting physical. He stabbed me in the arm with a pencil one day which drew blood and never got in trouble for it, but when I retaliated by picking him up and throwing him (he was significantly smaller than me) I was sent to the office and almost suspended.

Fuck Victor man.

[deleted]

Apology not accepted.

I joke lol.

At least you smartened up. Most of my schoolyard bullies are now dirtbags/drug addicts/dead.

^{Im kinda okay with that}

And if you WERE Viktor I'd probably be more understanding.

Victor came from an abused home with druggies with parents. Kinda explains him being a walking piece of human trash. Can't really blame the kid I guess.

Good on you man. I wish more people had the mental toughness and empathy you seem to have.

Mental Toughness yes.

Empathy is probably the wrong word lol. I understand why he is the way he is.

I would still hate him. As misplaced and ignorant as that hate might be.

What a jerk. Thanks for responding! Now, do you have a happy memory to share?

Hmm in regards to my skin condition not really lol. Although it has given me the ability to laugh at myself a lot more. I can walk up to my friends and be greeted with "what's up scaly faggot" and laugh with it, but then again this was because I had to adapt or die. If I didnt learn to laugh at it then I would have learned to hate it.

Dragons have scales, so you have more in common with a dragon than I do. That makes you cooler than me.

I also breath fire but yeah sure go right the fuck ahead and ignore that part.

Check your privilege.

10/10 best comment ITT

You're fucking hilarious and your responses have me reading the entire comment section

God realized he fucked up the skin and gave me comedic abilities to make up for it.

I would have preferred the twelve inch schlong as a consolation, but hey, ill take what I can get.

As a long time sufferer of eczema I love your attitude. Haha, you are hilarious! I wish I could make light of my situation like you do!

Edit: pronoun confusion

No need to edit in this thread son. We're in the business of killin grammar nazis.

AND BUSINESS IS A BOOMIN.

Let's turn that into a bumper sticker.

I need this mailed to me. Holy shit. Imagine if Victor became a meme?

Id feel so good about myself.

Until I remember him brutalizing me in my dreams at night.

No tears. Only dreams now.

I feel like if you knew this guy, than you must've connected with the Scumbag meme.

I actually just kinda buried him in the deep parts of my head hoping he never came back.

And besides, you'd have to make Scumbag Steve five feet tall and very black.

l. He stabbed me in the arm with a pencil one day which drew blood and never got in trouble for it, but when I retal

Glasses, braces, bad skin, not the same but I feel your pain on being singled out like that. It was always the little guys that caused the most trouble :/

It stopped when I started getting more openly aggressive towards these people which I guess is cool.

I never understand how people can witness bullying taking place with nothing being done about it until the victim retaliates and gets in trouble for it, good on you for hurting that kid.

I was a bit of an outcast oddball who was disliked by most people at school, but one similar kid in particular gave me a lot of shit for a year, threw food and rocks at me, egged my house, slashed the tyres on my bike at least once a week, he once tried to straight up steal my phone and wallet at knifepoint in some woods outside school but I managed to get away. Couldn't touch him because he was friends with another guy who was older than me and 3x my size, 17 year old nasty piece of work who has been in an out of prison since. One day they fell out for good after the small one groped the bigger guys sister (don't know why he didn't kick his ass for that).

A few days later the small kid thinking I hadn't heard what happened decided to knock my lunch on the floor as I was walking outside with it, to picture what happened next imagine a horribly one sided fight in an english schoolyard while Beethoven's Ode to Joy choir chorus is playing in the background.

In all of the shit I got from him the school didn't give a shit and would never go further than asking him if he did anything to me then closing the matter when he denied it. Of course I didn't deny kicking his ass and got suspended for 2 weeks, which I spent taking it easy with my mother's blessing.

Haven't vented that story in a while, but the universe has a balance and sometimes karma will make a bully eat fist.

That got my heart going and I wasn't even there.

http://www.youtube.com/watch?v=mYO9VeKiOgo

you may enjoy this.

Heh, me too, go go gadget growth spurts!

lol

Go-Go Gadget Fist Punch!

Mrs Hines: Sandalman3000, I want you to work with WashDishesGetMoney for this.

Me: Mrs. Hines, I can't work with that freak look at him...

Mrs. Hines: Mouth drops

Me:, seriously, who wears those pants with that shirt?

Good times.

H8 U

Gotta say the spirit in this thread is awesome!

Has your Epidermolytic Hyperkeratosis affected your ability to find work get hired?

I've known a few people over the years with visible, non contagious, skin disorders & they were constantly being turned down because of it.

Nope, but then again I wouldn't apply to a business where I could be turned down by it ya know?

But as a dishwasher and as someone who works with food A LOT there isnt much a pair of gloves cant solve.

You... You are a wise man.

If you wanna be dumb ya gotta be tough.

And im a lil bitch soooooo...

Lmao. Thanks man I needed a laugh.

I'm guessing that's another reference I don't know?

http://www.youtube.com/watch?v=L4HJY9tQ94M

Good day,

Do you have special ointments or moisturizers that you have to use? Also, would it be a bad idea for you to get a tattoo?

I use moisturizer on the daily. My personal favorites are the Vaseline for Men creams.

And as for the tattoo I do not believe I can get it on the afflicted areas, but on my normal skin it should be fine. My grandfather has one on his normal patch of skin and it seems to do quite fine.

Oh and for prescriptions I use tazorac topical ointment, but it's really not worth the bang for your buck so I haven't renewed the prescription in a very long time.

CeraVe is a skin moisturizer recommended by a lot of dermatologists. In my drug store it's found near the pharmacy instead of in the skin care aisle.

Maybe check it out? Www.cerave.com

Literally never heard of that, and I usually think of my self as "in the know" about skin creams.

I'll look it up. Thanks brosselini.

You should check out /r/skincareaddiction

Omg yes this is a thing.

Have you tried eucerin? My dermatologist gave me this stuff called eucerin intensive repair when I was on accutane that helped a lot. That and aquaphor

Yeah. I just don't like how thick it is. Works great though!

They tried to put me on accutane by the way. I said Fuck no. Cant risk the depression it can cause.

Yeah that's funny because after I posted that comment I was thinking about what effects it would have on you considering it dries everything out so much. But yeah I've never really been the same mentally since I was on it but there's a dozen other factors that could have influenced that honestly. And I know at least 6 other people that were on it and no adverse affects.

Yeah my personality is definitely just worth more to me than any cure-all. Even if it's a very low risk.

I need my boyish charm, yo.

Hello!

My girlfriend just linked this post to me. I am a 28 year old male who also has Epidermolytic Hyperkeratosis; although mine looks a bit more severe. I can relate to almost everything you've said here. I've never met or talked to anyone else with this skin condition. I would be very interested in discussing this further with you! Have you ever met anyone else with this skin condition?

proof

Yeah my mothers side of the family is afflicted, and a lurker just made her first account right here on this thread because she too had never seen someone with our condition, and in fact im supposed to talk to her after she is done with class. Im so happy im finally able to reach out with people who have it that arent my family.

And my hands used to look like that until i got a job working with water and soap for nine hours lol.

That's awesome! I'll have to find her post. Yeah, when I was a kid I used to swim a lot, which would almost clear up the scaling for a few days (my skin would "wither" off in the pool and get kind of gross...). You appear to have more areas affected than I do; my hands and feet are the worst afflicted. My body has built up the thickness in those areas more than anywhere else. My elbows/knees are somewhat affected, but those two are the worst by far.

I don't really know what to ask, as I've thought about what it would be like to meet someone with this for a while, but never though i'd have the chance to do it. I guess i'll start with; have you found any medicines that truly affect the symptoms? I've tried 100s of things over the years and give up on most because it only treats the visual; which i can live with. I've been to top hospitals in the US (Emory in atl, Duke, etc) and i'm always the first they've ever seen (or at least I was) and the most reliable thing i've found to treat the scaling is plain old Vaseline.

Vaseline will dry it out over the years. My hands arent as bad because I dont use Vaseline I believe. I just stick to lotion and Tazorac prescription cream. The only time I went to a top doctor he told me to go on accutane, and that was a BIG NO.

Hey,

my younger brother has pretty bad keratosis pilaris, and even though he's a handsome guy he's pretty self conscious about how rough and scaly his skin gets. I guess I was just wondering, if there's anything I can do to ease that self consciousness for him?

thanks for sharing, not a lot of people realize how something like skin conditions can mess with your life. it's always good to spread awareness, if just to ease others feelings of being alone.

As I said before, being more open about it, especially to females, helps a lot. Having just one girl best friend can make or break a guy. Because girls for some reason have this ability to make you feel fucking beautiful even when you feel like shit, or even when you cant stand the look of your own body.

But as I said before, just breaking free of his shell is so important. You need to fucking OWN what you have. it's hard and I wont deny it. You cant just wake up one day and be comfortable with yourself, but one day he IS going to have to wake up and decide if the disease he has will define him for the rest of his life, and I really hope he knows better than to let it control him.

Tell him I said It gets better. Because it does. it always does.

You're fucking welcome because you deserve it, studly!

Sincerely--

--girls

http://imgur.com/gallery/D0cjN

thanks so much, I will let him know!

I worry about him a lot, he doesn't get out much unfortunately, and online schooling has made him even more of a hermit. add the ending of his long term relationship, It's a lot to handle for anyone. I hope someday he'll own it, as you say. you seem to have some grasp on that yourself, and I'm glad. I'll take your advice and keep it in mind. (:

If he's a wee bit of a recluse I seriously suggest online dating then. No shame in it. It's really cool and you get to meet a lot of non-judgmental people through it.

I wish him the best of luck!

Is it hard having a condition with such a complicated name?

^{Sorry. Couldn't resist.}

I've been able to say it since I was five so the only problem appears to be other people pronouncing it.

Can confirm, difficult to pronounce

Source: I'm Dutch

EDIT: Dropbox suspended the link, hosted elsewhere

I listened to that all the way to the end, all the while trying to figure out if I had an Ad on a youtube page some where in the background that was playing that fucking song.

H8 U.

Is this painful? It looks painful. I think someone I went to elementary and middle school has/had this condition and was teased relentlessly. If that happened to you, sorry. If J.K. from Connecticut is out there, I am sorry. I got mine later in life.

I grew up getting cuts and scrapes A LOT because it tears easily and I played football, so I have a really high pain tolerance, so no it isnt painful really.

Unless I get a piece clipping onto something. Fuck that so hard.

Serious question now, does your condition always flair up in the same spots or can it appear in places it's never been?

Usually in the same spots, but occasionally I start to get random patches on my legs or something. I refer to these spots as "asshole spots" because I dont like them.

And because theyre assholes.

hows your dick?

About average I would say.

awesome thanks man, What would you recommend for penile dryness {serious}

Extra thick cremes or slab on vaseline overnight. Just really cake it on there.

The next day you will wake up to a (hopefully) silky smooth schlong.

silky smooth schlong

Vaseline's marketing team needs to hire you

Or Durex. or Astroglide.

Mix a dab of vaseline, vitamin E oil, and coconut oil. My winter dry skin combo breaker.

That actually sounds amazing. I'm gonna try that.

Thanks brodolf hitler.

Heyy thanks for the AMA, I had never heard of this before! I saw the question about social upbringing but may I ask how this condition affects your romantic life?

Oddly enough, it seems that girls really look by it. I'm not sure if it's because girls are more personality based or something.

Wait. I know what you're getting at. If it's on my dang-a-lang.

If I lotion it enough it isn't really noticeable at all, but before I had my circumcision done (at age sixteen) it was pretty bad on it. to the point if a girl were to offer me a blojowski I'd decline at the chance of being ridiculed.

blojowski

felt better than "Oral Sex"

Well the dick stuff was a bonus but thanks for the first part of the response! Sounds like you have a great attitude despite it :)

I probably would've committed suicide or something stupid like that if I didn't develop the non-shitty attitude lol

Well...that took a dark turn

Life is dark, yo.

If I lotion it enough

You mean to say there is a possibility you don't?

Hey man, everyone needs a cheat day.

Damn. You were getting offered blojowskis before 16? I was born 15 years too early...

Well no, if they were offered. But I actually got the circumcision when i got my first girlfriend because.. well... if I wouldn't put it in my mouth because it's funky then why would I expect her to? Lol

As a preface to what I'm about to ask, I'll say now that if I'm overstepping my boundaries, then I apologise.

You say that the condition affects your skin primarily around the joints, but with places such as the insides of the arms I'd assume that buildup of sweat and skin creasing contributes to it. That being said, have you ever had to take additional measures to assure that the EHK does not affect the skin surrounding your groin, or even more sensitive areas? Or has this particular factor been a non-issue to you?

Also, if moisturisation and protection of you skin is ever an issue, then I can personally recommend the Purepotions product Skin Salvation. It's thick stuff, and it will stain whiter-coloured clothes over extended periods of time, but I've never come across a better hydration cream. I've had eczema since I was a baby, and I've been through the gamut of prescription steroids and moisturisers. That Purepotions stuff is the only thing which has stuck. I'm not sure if they ship beyond the UK, but it's worth looking into.

The groin area has the condition but the actually pillar and stones are pretty free of it. And with the groin, it only looks like red skin so it isn't insanely scaly or any of that. I make sure to moisturize the shit out of it like I'm a firefighter at a civil rights march.

Pillar & Stones... Awesome!

Here I thought I'd heard them all.

Got it from Game of Thrones. No credit here folks.

It looks like my eczema, which itches a LOT. Does yours itch? Do you still get staph infections? Ever had a bad one?

I itch like a fucking madman some days. I literally wanna buy one of those grooming monkeys just to do it for me.

And as for the staph infections, I rarely get put into spots where I'd get one, and I also have a pretty strong Immune system, but the one time I did get one it was ultra shitty. Massive blisters behind my knee after football practice. Turned into Embitigo or whatever the name is.

Can I be your friend? I don't care if you have a skin condition.

Yeah but I care that you do...

I joke.

But of course! We're all friends here on the skin condition thread.

Just wanted to say good for you being so accepting of it and ask how do you cope with it? I have a genetic skin disease myself, steatocystoma multiplex, and it has made me incredibly self conscious. I am not afraid of going out and talking to people but forming serious relationships is hard and usually ends poorly for me.

I lucked out by having a very open and not-giving-a-fuck attitude, but for people who can't just form something like that out of the blue it always helps to have a friend of the opposite sex that has seen your body, and doesn't care. A girl best friend really can mean wonders. As for relationships: SHE/HE WOULDNT HAVE DATED YOU IN THE FIRST PLACE IF THEY DIDNT ACCEPT YOU. That is so key to remember. Almost all serious relationships involve both partners looking over each others flaws. If you have a lady friend that accepts then you need to break free from the shell of desperation and understand that she/he doesn't give a shit about it. They see you for you, not for your steatocystoma multiplex. And if they do give a shit about it? Fuck'em. They aint for you bub.

What do you mean by 'missing large patches of skin'? Is it like a muscles are exposed kind of deal, or there's something else there? Could skin grafts help? Does this affect your ability to create scars?

Thanks for the AMA, I've never heard of this before.

As In my very first layer of skin. I just looked like a VERY red baby. Kinda like baby Hellboy without the horns. The skin grows back within the first few months of being alive though.

And no, the skin grafts would be going onto areas that are affected and subsequently grow onto the skin grafts.

Scars for me are usually pretty normal, although I'm told I heal pretty quickly by comparison to other people.

Can you masturbate or...?

Im a 19 year old male. Cum hell or high water I would have found a way.

But yes I can.

I had developed staph infection a few years ago when the outbreak happened. It was painful dealing just one blister on my knee. Later on, I started getting them on my thighs so I couldn't even sit down in my desk properly. I occasionally get blisters here and there but its the same process of dressing the wound with ointment and taking antibiotics. I cannot imagine how you deal with this daily but I have immense respect for you for raising awareness.

What is the hardest thing you have experienced with this condition?

I can relate to that. Got embitigo or whatever it's called behind my knees after football practice. I couldn't walk and i was on a slurry of pills and cremes.

But I digress from the question.

The hardest would definitely be Making friends and getting bullied as a kid. It was pretty tough. My brain has blocked out most of it because it was an ultra shitty time of my life.

Impetigo may be what you are referring to.

Impetigo

THANK YOU.

Hey. Have you ever taken a vacation to somewhere really really humid? There was a friend of mine in university that suffered from a similar condition and we went to a humid place and her skin was relieved. She almost never went back home lol

I told another person suffering with severe plaque psoriasis to move to Arizona because the climate really helps with the dry skin problem.

I've always wanted to try the Bahamas though

Try florida never not humid.

/r/FloridaMan

Right there is the reason I wouldnt try Florida Lol.

Was there ever a point when you tried to remove the calluses? I don't imagine it would be worth your time, especially if it just grew right back, but did you ever try? And how did it go?

Not really. I learned from a young age that it wouldn't work because I used to get abrasions a lot from the sensitive skin, and I noticed those coming back.

Is it related to Epidermolysis Bullosa?

Epidermolysis Bullosa

From what I understand about Epidermolysis Bullosa is that both my condition and the one in question manipulate the keratin genes in your body, but it is a totally different set of genes that each disease manipulates. So they aren't exactly related.

Also, epidermolysis bullosa can be lethal directly, whereas mine can only be indirectly lethal.

Was curious because I have a coworker that unfortunately lost their newborn to epidermolysis bullosa a few years ago.

My condolences to their family. It's things like that to make me happy to have what I have, and not something along the lines of that.

One of my best friends has EB and his skin is just very fragile. It tears and blisters easily and what not. His fingers are fused together from scaring and usage as a child (his thumbs are free though). He has to use massive amounts of moistruizer and lubricating ointments and what not and bandages his arms and legs every day to prevent infection from tearing.

I seriously are in awe of people who survive with things like that. I wish him the best of luck in life.

Does it consistently only effect certain spots or will it be your elbow one day and then ur knee the next? I feel like consistency would be easier to deal with.

It's generally very consistent. The pictures on my proof link are the constant areas that I'm affected.

I was born with the same condition. I have meet other people who have EHK but their skin never looked similar to mine. Yours looks almost exactly the same. Do you have siblings that have the same condition?

Dude my mom and her family all have it and they all look different... Mine is the only one that looks like this. Maybe it's because we're young?

Sorry man. Having had chronic severe psoriasis most of my adult life, I can understand what you're dealing with. Your condition looks similar to what I used to experience. Have you explored treatments with drugs like cyclosporine, enbrel, or humira? The first two did wonders for me.

Apparently most psoriasis drugs won't work for me because it's a totally different disease right down to the roots.

I do recall a doctor trying to put my on psoriatene or something of the like, only to have it mass recalled six months later for causing mass depression and suicides.

thank god I said no after seeing the side effects. My personality is the best thing I have going for me. I can't risk fucking with it.

Just curious, did you not have a good experience with Humira? It is what my boyfriend is currently on and it has worked amazingly for him.

I actually haven't tried it. Next time I head to the dermatologist Ill give it a go-go.

Get laid yet?

Yes lol