I have a very rare disease that causes my skin to be extremely fragile. AMA!

What brings you the most joy in life? How does your condition limit your day to day life?

I feel for you.

I don't truly know what brings me the most joy. I enjoy typical guy and young adult things. But I love making people happy. I am very fortunate to have lots of people who truly care about me. I get lots of support from my church family.

As for my daily life, Epidermolysis Bullosa is very painful. I have large open wounds. I wear a bandage that covers my torso, like a vest to protect my skin. That has to be changed every day, and is uncomfortable and often painful. In the summer I have to avoid heat. The cold also makes me hurt because my skin is thin. I cant participate in any contact sports. I often have trouble opening things, like bottles and cans. The also takes an emotional toll on me. I'm always dependent on someone to help me. And I have insecurities. I'm always trying to cover my skin. Dating is hard and it's embarrassing to explain the disease to new friends.

Please tell me you can play computer games. Being a young adult and all.

I can, but I've never been too interested in them. I'm more of a watch-Netflix-all-day person.

Have you ever tried chess out?

Yeah I'm no good at it. :(

How sensitive is your skin? Does it hurt to touch something that doesn't have a smooth surface?

I have a mild form of the disease and have what's called mosaicism, which means that my face, arms, and legs are perfectly normal, so they aren't sensitive. The main area affected is my torso. I wear a bandage, much like a vest, that is changed every day and protects my skin for the most part. Without the bandage it is extremely sensitive. There are places that just lightly touching causes extreme pain.

Does mosaicism mean specifically those areas aren't affected, or that just random areas are unaffected and it just happens to be those areas for you?

It just means that random areas aren't affected.

Are you treated with pain management medications, or do you just have to deal with it?

I take prescription pain medicine.

what medication?

Oxycodone

I think its amazing that your face and neck are unaffected. I bet that definitely makes life easier for you. Can people easily tell/ ask you questions a lot?

My neck is affected pretty bad so they can tell when I wear tshirts. In hoodies it's completely unnoticeable except for my hands

Wow, I didn't know there were different variations on EB. That's really interesting. My cousins have four kids and two of them have full-blown EB. I've seen the toll it takes on a person and family so you must be quite a fighter. All of the pain, bandages, and surgeries they have to go through is enough to make a person quite cynical so props to you for staying so positive! I didn't have a question, just wanted to say keep on keeping on and good luck with film!!

Thank you!

I have a mild form of the disease

Yeezus.

Yeah. I'm very fortunate.

So how was going through school like for you ?

Also, do you have no fingernails (if yes, is that part of epidermolysis bullosa) ? It looks like that in the picture, or skin is covering it at least.

School was rough at times. Heat affects my skin pretty badly so I could never go out to recess when it was hot. I couldn't play contact sports and often had to sit out of gym due to blisters on my feet. I never really experienced bullying. K-6 was small enough that everyone knew me well and was used to my skin. They were cautious of me, but never mean. Going to a new school in 7-8 and 9-12 was intimidating. No one knew about my skin. They were all very curious, but very nice once they understood. I was always trying to hide my skin though, feeling embarrassed.

I was wondering if anyone would notice that! You are correct. No fingernails or toe nails. They fell of when I was young, which is a blessing. My skin itches a lot and scratching can cause it to tear, so no nails helps preserve it.

how do you open cans?

with a can opener?

I can use a can opener. I was referring to soda cans. I don't have nails to get under the tabs with, so I have little openers to help. But I can get pretty creative. Anything to wedge under the table will work.

The little tab on the top of these is for opening soda cans.

I have a couple little plastic gadgets specifically for opening soda cans

Wait... are you also /u/jumpup ?

Nope!

"I was referring to soda cans."

This part confused me.

I think he's referring to a different comment he made earlier in the AMA.

I often have trouble opening things, like bottles and cans.

Or at least that's how I interpreted it.

You are correct. Sorry for the confusion.

Try a spoon! When I worked at a bar that's what we would use cause we had no draft and had to open hundreds of beer cans per night.

I have a couple plastic things specially made to open cans, but spoons are my go-to in a pinch!

You can also pretty easily open cans with your teeth

I've never tried. The skin in my mouth is also fragile, so it probably wouldn't be a good idea.

Fuck man, you can't eat Cap'n Crunch.

Hahaha Never was a fan anyway.

Ever seen this episode of Spongebob?

I have! I never really associated it with my skin condition before.

How is it when you try or get intimate with someone?

Or, if you don't mind me asking (though I'm sure there's more people than myself who are interested) how is it when being intimate with yourself?

With myself it's completely normal. That area isn't affected. With others is different. I have been able to have sex, however it takes a very understanding partner. I also can't be completely naked due to the bandage I wear. I feel very insecure about it, but it's very possible.

Some what related. Is this genetic? If you were to have a child (if possible?) would the child have a higher risk of this disease?

I'm not sure on children yet. My type is recessive which means if my wife didn't carry the gene we could have healthy children. However since I don't have it, the chance of a random mutation is higher. It would require genetic testing for my wife and a serious talk about what ifs. I do know people with the disease who have had perfectly healthy children. I would just hate for another person to go through this.

Thanks for sharing. Best of luck with everything!

Thank you!

There's also the consideration that children you have could be carriers, so they would also have to take precautions.

Exactly. More than likely I'd choose adoption, or if my wife wanted one of her own I would consider a sperm donor. I certainly won't rule out one of my own, but I don't want to put anyone else through this.

Yeah, being a carrier isn't so bad since its such a rare disease, it's just important that any children would be aware of that.

My kids would definitely be aware, growing up around me. Kids aren't in the near future for me though, so I've got some time to think about it.

The fact that you have the ability to have sex makes me happy. Connecting with another human being on that deep of a level is, I think, essential to life and happiness. Nobody deserves to be held back from experiencing intimacy.

It makes me pretty happy too. :)

What bandage do you wear? How can you shower if not completely naked?

My bandage is 3x8 non stick pads with petroleum jelly on them, with rolled gauze over that, and a self-adhering wrap over that to hold it all in place. I remove the bandage daily before my bath, then reapply it after.

Is bathing/showering especially difficult?

Yes. I wear a bandage that covers my torso to protect the skin. That has to be taken off first, which is often painful. Then I take a bath with bleach in the water to help fight infection. Water is painful on the open areas. Then I have to air dry to avoid friction from a towel. Then the bandage is reapplied. On a good day it takes 30 minutes at the leat. Usually it's around its between an hour and 1:30.

Oh jeez, I'd think bleach is the last thing you'd want to put on your skin.

Surprisingly, it doesn't burn any more than the water. I add about 1-1 1/2 cups to the water, so it's not too much. Very helpful with fighting infection. I also occasionally use vinegar-soaked gauze.

Air dry = drip dry or with a fan/heater/magic contraption?

Drip dry. I dry my arms and legs with a towel, then just stand there for 10 minutes or so.

Bleach?! Like hydrogen peroxide, or something? Jesus... That's old-school... But if it works for you, then it works...

EDIT: You know infinitely more about this than me, but from Wikipedia I see that hydrogen peroxide might be falling out of favour in medical circles...

"Historically, hydrogen peroxide was commonly used for disinfecting wounds, partly because of its low cost and prompt availability compared to other antiseptics. It is now thought to slow healing and lead to scarring because it destroys newly formed skin cells."

I use a chlorine bleach. It's not hydrogen peroxide. Although killing potentially deadly infections would be worth the scarring.

It's pretty common for those with the disease. Very effective at killing infection. Surprisingly it doesn't hurt any worse than the water. It's only about 1-1 1/2 cups mixed in with the tub full of water. Sometimes I'll use vinegar-soaked gauze also.

How did it feel when you found out there was no cure for your disease ?

I've had the disease since birth so I grew up knowing. As for my parents it was devastating. It took a couple days to identify what the disease was because the doctors had never seen it. Doctors told me parents they didn't expect me to live 3 days. Yet here I am 20 years later.

There is lots of great work going on to find a cure. There are so promising studies being done with gene replacement, but I try not to ever get my hopes up.

This comment made me really happy. I love when doctors are proved wrong. My mom was given a 1 year to live and she's still kicking 9 years later. Life truly is a miracle

It feels so great to prove them wrong. They tell me and my parents all the time that I'll never do this or I shouldn't do that. So I go do it.

They tell me and my parents all the time that I'll never do this or I shouldn't do that. So I go do it.

This really made me smile. Good on you bro

Gotta let somebody motivate me! :)

Throwaway2136865 you should definitely not jump off this cliff.

I'll show them that I can do it !

I'd probably go get a parachute just so I could prove them wrong. :)

you'd probably want a wingsuit

Probably a better idea.

Is there a treatment regimen

Just keeping the wounds clean and covered.

Never heard of this disease, yet today I read My fight to save my daughter’s skin this morning and your AMA just now!

I found the bone marrow therapy interesting, and was particularly interested in the gene correction/replacement as there are many similarities with cystic fibrosis (ie the code to make certain proteins isn't working iirc?), which affects my family.

Anyway, I don't really have a specific question, but thank you for doing the AMA, I have been wondering about it since reading about the girl this morning, good to learn more, particularly that there were different degrees of it. Obvious really, but I hadn't thought of it.

Thanks!

It's great that one more person is aware now! The gene correction is very exciting and has the potential to cure over 4,000 genetic diseases! Thank you for taking the time to read.

Since you have a mosaic defect, you would not require gene replacement. A biopsy of your "healthy" skin could be expanded in culture and grafted onto your more affected skin. This treatment approach is not standard of care, but is being tried in research settings.

That's been tried and has not worked. Eventually the skin breaks down and returns to a fragile state.

Have you ever wanted to get a job somewhere, and later found out your skin would make that impossible?

Definitely. I can't work anywhere in the heat. I cant lift more than maybe 20 lbs consistently. And I can't work with food due to open wounds. I've never actually had a real job.

How good are you with computers? Surely that would be a job path you could take? There are plenty of jobs in the area?

I'm good with computers. I'm currently in college studying video production. I'm working on becoming an editor.

Good luck with that, man! Sounds like a really good fit and seems like you're passionate about it.

Thank you! I really love it. It's my way of story telling.

Something I did to teach myself how to edit was I would take feature length movies and edit them down to ten minutes with three acts. Each act would be edited to film music from another movie. And there would be no speaking. That way, I would have to tell the story solely through my editing choices. I highly recommend it.

That actually sounds really interesting! I may just try it! Thanks!

Do you have bones made out of glass?

Thankfully my bones are perfectly fine.

So how do you masturbate if that's even possible?

Thankfully, that's one area that's not affected.

Amen. Gotta have the little things.

I hope that wasn't a pun...

First off, thanks so much for sharing your story with us! Secondly, I do have a few questions.

1. Does your condition not allow you to form callouses?

2. Are your finger prints effected?

3. Does your skin have trouble scabbing? That wouldn't be fun considering your open wounds.

4. Do you find yourself wearing gloves and long sleeve shirts all the time? Do/would they help at all?

Thanks again!

I'm just glad I can spread some awareness!

1. I can form calluses, although it doesn't happen often. Most areas where calluses would form are covered in scar tissue. The one big callous I do have is on my foot and I sometimes get blisters underneath it.

2. I only have finger prints on my pinky and ring fingers and one of my middle fingers. They are less scarred.

3. It scabs normally, but heals slowly, and because it's so fragile, a wound will often reopen before it can heal. Some of them are also very large, over half dollar size, so they take a while to heal.

4. I don't try to hide my hands. They don't bother me too much. And my arms and legs aren't affected. I do wear collared shirts or hoodies a lot to cover my neck though. Clothing doesn't offer any protection.

At a recent Pearl Jam concert, Eddie Vedder spoke about EB. I had never heard on the condition before that. He was promoting Cause The Wave with the EB Research Partnership. He brought a young person with EB on stage and the two of them (Eddie and the child) waved to the crowd who went bananas waving back. I wasn't expecting a Pearl Jam concert to bring tears to my eyes, but man...onions. Anyway, you mentioned that your doctors had never heard of the disease and I hadn't either before that concert. My question is, what can the average person do to help? (Edit: I not reddit format good)

Yes, what Eddie is doing is great for EB awareness!

That's also a wonderful question. The best thing is to be educated about the disease and spread awareness. Even if it's just a simple "Hey check this out" post on Facebook. You can also help by donating to EB research here.

This AMA just slammed awareness down reddits throat. Good job, look at the number of views tomorrow and realize that you made a significant impact.

All I wanted to do was raise a little awareness. I never expected this. :)

What do you do when you have an itch, since you can't scratch?

Usually I scratch anyway. It itches too bad not to. When I was younger I tool medicine to relieve the itching, but it doesn't work anymore.

How do you scratch without fingernails?

The skin on my hands is fairly rough due to scar tissue. It's actually a good thing I don't have nails though. It would cause a lot more damage to the skin.

Thank you for doing this AMA! I to suffer from this condition but albeit in a more mild form. Mine was also late onset (mid teens, now early 30s). It is always a constant struggle to be careful and to try my best to not let it affect my life. It is hard though when basic tasks if done clumsily could result in knocking off a huge layer of skin.

If you ever need anyone to chat with who can relate somewhat let me know.

With regards to the blisters, how do you handle them? Mine seem to be watery blisters that do not go away if left alone so I end up just breaking them and then following basic first aid. I figure there has got to be a better way. Any tips for an EB bro?

Nice to see a fellow EBer! As for blisters, I pop and drain them with a sterile needle and gauze. You might want to check out this Facebook group. There's all kinds of good info and people to answer your questions.

Do you have to take any medication for it ?

Has it ever hindered you from perusing your dreams ?

Last question , when you was little, what did you wanna be when you grew up ? :)

I take Oxycodone for pain a few times a week. I also take Atarax for itching, although it doesn't really work after taking it for 20 years. I also occasionally take Miralax. My body loses lots of fluids through my open wounds and that can cause constipation. I'm also take antibiotics a lot for skin infections.

I'm currently working on pursuing my dream of being a filmmaker so not too much. It has however stopped me from doing a lot of things I wanted.

It depends on what day you would've asked. It varied between car designer, lawyer, and ambulance driver.

Hahahahahaha ambulance driver. Kids are weird. I wanted to be a house.

Hahaha a house?? And I was never interested in the paramedic part. I just wanted to drive an ambulance really fast with the sirens on.

To be specific, a blue house with pink polka dots. I was a way cooler 5 year old girl than I am now at 20, haha.

That would for sure be a very colorful house! What does one do as a house though?

I'm likely not the first to suggest this: make a documentary about YOU!

Your AMA and story has me rapt. From the uniqueness of your condition itself, loving so much longer than doctors anticipated, and your spirit... I'd watch it! By spirit I mean you come across as well adjusted, thoughtful, and most surprising positive not bitter or angry! I may be jaded...

Indiegogo it! (If you do PM me do I can promote it! Not a pro or offering a service. Just a Canadian which = a keener!)

Thank you very much! I've thought about it, kind of a "year in the life of" thing, but I don't want to seem self-absorbed or anything. Thank you so much for your kind words and support though!

Ah man, your rattling with all them drugs .

I study medicinal chemistry, I'm looking into synthesising new antibiotics at the moment . I'm always intrigued about different tablets people take, so thanks for the reply.

Film maker- that's pretty cool ! Best of luck with it :)

Those are just the ones I choose to take. I get prescribed crap all the time. And please continue work with antibiotics. Between developing tolerances and allergies, my options are few. Also, my throat is affected which means I can't take pills or capsules. So try and make some liquids too! :)

Thank you!

I didn't even consider the possibility that inside of your mouth or throat could be affected. What's your diet like?

Yes, my mouth and throat are affected. For the most part my diet is completely normal. Sometimes when I get a blister in my mouth I have to avoid salty foods, and I get strictures in my throat that can limit me to soft foods at times. I've had 14 dilatations to open my esophagus.

Do you have any short films or anything that we could watch? I'd love to see your work!

I don't have anything that I've done personally worth showing, but here's a few I've worked on and edited for a club I'm in.

Business Casual Slumber Party

Meet The Family

If Men Had Boobs

The Big Score

I also have a dream of becoming a filmmaker. What fascinates you most about being one?

I like being able to tell a story and show someone my vision.

Mind hooking me up with some Oxy?

Haha with the laws on pain medications it's hard enough to get what I need.

Might I just say, you have some beautiful knees!

As far as my question goes, why aren't your knees affected?

I have no idea. I used to get blisters behind my knees, but haven't in years. But thank you for the beautiful knee comment!

Do you have any friends or family members with Epidermolysis Bullosa?

No one else in my family as far back as we can trace has the disease. I have an older brother that is perfectly healthy. I don't have any close friends with it, but have met some through a support group in my state and I've met lots through groups on Facebook.

No troll. Have you ever resented your parents for passing this disease onto you?

Not at all. No one as far back as can trace on either side of the family has had the disease. They hadn't even heard of it before. I don't blame them for it at all. They've been very supportive and tried to give me the best life they could.

As a kid, have you ever dreamt about becoming a super-hero\villain?

If so did you condition reflect in your super-hero\villain motivation or powers?

I definitely thought about it, but any time I used my imagination I was always perfectly healthy. I always wanted to be as normal as possible, and to this day don't really like discussing it. Thus the throwaway.

Have you ever seen the BBC doc on Jonny Kennedy? Your thoughts on it?

https://www.youtube.com/watch?v=1V0PW_61xKs

Do you also have a similar risk for skin cancer that he did?

I've heard a lot about it, but haven't had a chance to watch it yet.

His subtype is much more severe than mine. While skin cancer is a very real possibility for me, it's not as likely as those with more severe subtypes.

Brace yourself if you do watch it, it's very sad. But also uplifting at the same time.

The part that struck me most was when they showed his mother helping him change his bandages. It gave me a sense of how incredibly painful this disease was for him. Shortly after that they discuss whether, if the mother had been able to prenatally test for this, would she still have had Jonny. She says absolutely not, and he agrees with her. It's a very honest moment.

It definitely is painful, but we get through. Neither of my parents had testing. I have an older half sister and older brother that are both perfectly healthy. I've never asked my mom that question because I don't want her to have to answer it. I know she loves me very much and would do anything to help, but I don't want her to have to say she wouldn't have me, even though I pretty much know it true. She has said if I was her first child, she never would've had another.

Not really a question, but my French teacher wrote a song about a little girl in our community who has the same skin disease. I thought you might like to take a listen! (link)

But my actual question: how rare is the disease? Have you ever met someone else who has it?

Thank you so much for sharing that! It really made me smile.

Epidermolysis Bullosa occurs about 1 in every 50,000 births. My specific subtype is even more rare, only 17 people in the world are registered with it. I've never met anyone by chance with it, but have met some people personally through a support group. I also know lots of people of Facebook with it.

If you're in strong wind, will your skin get sore or damaged?

No. It's not quite that sensitive.

What causes your condition, and why is it localized to just your hands, feet and torso? Are there any experimental treatments in the works that could eventually help or cure you? If they were to graft unaffected skin from other parts of your body, or from lab-grown skin would it remain healthy or return to the thin, sensitive state?

Epidermolysis Bullosa is caused by a genetic mutation. The mutation causes a deficiency is the protein that anchors the top two layers of skin together. Why mine is localized the way it is is unknown. It's called mosaicism and is unexplainable. There is some great research going on, especially a process of repairing genes, which could cure over 4,000 different genetic diseases. Skin grafts, whether from the patient or lab grown, do not work over time. As the skin breaks down over time, it becomes affected again. Sometimes it will work temporarily, but the trauma from the donor site or the inconvenience far outweigh the benefits.

Where do you work? And what's the environment there like? Have you had any big accidents which have resulted in a bad way on your skin?

I don't have a job and never really have had a real one. It's hard to find one when I can't be in the heat, can't lift a lot, and can't work around food.

The worst single event that's happened was very traumatic. I tripped and fell onto asphalt. When I caught myself all of the skin on the palm of my hand ripped off. It was filled with pieces of asphalt. I had to go to the hospital and have the skin removed, then spent hours over the next few days scrubbing it, getting out the pieces of pavement.

Sound painful, how long ago was this? And does typing on a computer not irritate your hands? Or using a mobile phone? (cellphone)

That was about 12 years ago. It happened again a few years later, but on a gym floor. My hands are fairly tough now due to scar tissue. Typing doesn't bother me. Some things will cause my hands to be sore though if I do them long enough. Any hard labor wears them down pretty quickly.

Do you have fingernails?

No fingernails or toe nails. They fell of when I was young, which is a blessing. My skin itches a lot and scratching can cause it to tear, so no nails helps preserve it.

thanks so much for posting this to help raise awareness. I know it's hard to put yourself out there. My 16 year old daughter Cassie died from complications of EB in January. We've been trying to raise awareness through a film called Black Hat that's going to feature a character named after her(https://www.facebook.com/blackhatcassie) and some of the proceeds will go to EB research. Are you interested in possibly pursuing the bone marrow transplant that Dr. Tolar's team is doing in Minnesota?

I'm so sorry for your loss. I've heard about Cassie's story. As for the bone marrow transplant, I was told that I wouldn't be a candidate because my quality of life is too high. I'm hoping to participate in some other studies though.

My sister has the same disease. Living with a relative who has it is tough, so I guess my question to you is how has your family life been impacted?

I can only speak for my own family but its caused a lot of problems for us all emotionally. I'm was curious if it was just our family having issues or if it was a more common thing.

It definitely puts a strain on us at times. I feel like sometimes my older brother gets pushed to the side and I hate that.

How does your penis look?

Completely normal.

Can you do sports like everyone else? Or will your skin tear?

I've never been able to play sports competitively. My skin is way too fragile. However I have able to play some on my own. My brother and I used to play baseball in the yard all the time. And I can go for a run or shoot a basketball as long as my feet aren't in too bad of shape.

Have you met anyone else with your condition?

Although there is no cure yet, do you know of any research that looks promising? Are any researchers actively trying to develop new therapies? And if so, have you worked, or are you currently working with these people?

Thank you for your reply.

I have met others through a support group in my state. I've also met lots of people in Facebook support groups.

There is lots of research going on for multiple different approaches. The most promising right now is for a process of removing and repairing genes then reintroducing them to the body. Although its primary focus is on Epidermolysis Bullosa, it has the potential to cure over 4,000 genetic diseases. I'm not involved in any studies for a few reasons. Usually they take place too far away to be practical. I also don't like to get my hopes up. And for some studies the risks are too high. I'm a mild case and am sometimes not eligible because my quality of life is good compared to others.

So how does masturbating work? Or sex because heat affects you. Sorry if i came off as insensitive.

It works the same for me as everyone else. Thankfully that area isn't affected. Sex does take a very understanding partner due to the fragile skin and some physical limitations. As for getting hot, there's certain moments where I kinda stop worrying about my skin and just enjoy the moment. Sex is one of those times.

Do you take part in any charities to help raise money or awareness?

A teacher at my old school had it and he help spread awareness around the school and around the community.

Thanks for doing an A MA!

I've done some in the past and have family that does. I try to be as normal as possible and that often means not talking about the disease, which isn't good for awareness I know. I often feel embarrassed by it, which I shouldn't because I can't help it, but I guess I don't like the judgments or special treatment.

Who is your favorite superhero?

I've never been a big superhero fan. I'd say Batman, but he doesn't really count. He's just rich. Mermaid Man maybe?

Mermaid Man counts!

Well then that's definitely my choice!

Are you currently in a relationship?

I am not. Dating is hard for me. It takes a special person to understand what I go through and to be able to deal with it also. It's hard for me to truly open up about it because it seems like as soon as I show someone me at my worst, they can't handle it and leave. It also doesn't help that I have a total baby face and look 15 on a good day.

That sucks, man..I really hope you find the right person. Don't give up looking. And is there any chance we can see your face? I don't mean to be pushy, just curious

I'm not giving up. And I suck at taking selfies but here you go

Thank you so much for answering all of these questions! I must say, I agree with your superhero choice. Mermaid Man is the shit. On the topic of Spongebob, which is your favourite episode? Mine is the episode where they go back in time in that weird elevator thing.

That's a really tough question. It's probably the one where Spongebob goes to visit Sandy and tries to go without water.

Sorry if this has already been asked but is there anything you feel like everybody should know about your disease?

Specifically no. Just be aware that it exists. I really did this AMA to spread awareness. I'm very fortunate in having a mild form. Many children don't make it to their first birthday.

What's your favourite James Bond movie?

I don't really have a favorite. The classic ones are the best though.

What's it like to be Bruce Willis's arch enemy?

I have to be honest. I don't understand your reference.

http://www.imdb.com/title/tt0217869/

Ah now it makes sense. Never really liked Bruce Willis anyway.

Do you play any video games?

I have a 360, but don't play too often. Maybe a couple times a month.

What music do you like?

I listen to mainly country and pop/alternative. Taylor Swift, Mumford and Sons, and Blake Shelton are my favorites.

Is there some thing you can use to alleviate the symptoms?

Not really. Just pain medication.

Wow, that sounds rough :(

Are there any treatments available for it? How effective are they? Or is it just a matter of managing it?

There's no treatment. There are some promising studies going on right now, but nothing so far. It's mainly just managing pain and fighting off infection.

are essential oils especially dangerous for you? Do you absorb more through your pores?

I have to admit, I'm not really familiar with them. I don't use any oils or anything though. I tend to be allergic to a lot of fragrances.

Do you play any MMOs?

Nope. Never been into them really.

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I don't have fingernails or toenails. They fell off when I was very young, as is common with the disease.

Could you please post pictures of your toes?

I just added an album to the main post that has pictures of my toes in it!

Do you ever feel angry at God and if so, how do you reconcile your condition with a loving God? Thank you for doing this AMA.

I don't ever necessarily feel angry with God. Often times I don't understand it. Sometimes I get angry for certain events that happen though. Many people at my church have told me that God made me to inspire others with my strength and willpower. That's nice of them to say and sometimes it makes me feel good, but I don't really feel like I'm that important. My faith has helped me get through some very tough times.

I'm going through tough times right now and just hearing your story has given me some inspiration.

Thank you. And keep your head up! I know all about rough times, and it always seems to get better.

That's true. I've gone through very rough times before, and they always got better, but whenever I'm in the middle of one it often seems like it will last forever and never get better. I'm slowly learning to keep more positive though. :)

You just have to keep moving forward! :)

What will you most likely die of?

Can you have sex/masturbate?

Are you going to have children or let those faulty genes die?

With many subtypes of Epidermolysis Bullosa, skin cancer is very common. Fortunately with my type it's not. If I die of something due to the disease it will most likely be a skin infection. I fight infection regularly and have had a couple scary instances of ending up in the hospital with a 105° fever on strong IV antibiotics.

Fortunately my reproductive system works just fine. I have been able to have sex, however it takes a very understanding partner. I also can't be completely naked due to the bandage I wear. I feel very insecure about it, but it's very possible.

I'm not sure on the children yet. My type is recessive which means if my wife didn't carry the gene we could have healthy children. However since I do have it, the chance of a random mutation is higher. It would require genetic testing for my wife and a serious talk about what ifs. I do know people with the disease who have had perfectly healthy children. I would just hate for another person to go through this.

Do you want children?

I'm not 100% sure yet. I think so, especially if I could have my own, but I'm not at all against adoption. It just depends on where life takes me and how my health holds up.

As a secondary question, can they do testing for your disease prior to birth?

If they can, and the fetus tested positive, do you think you and whoever your partner was would consider aborting and trying again?

I honestly don't know if prenatal testing can be done for it. Genetic testing can be done on the parents beforehand, however my parents had no reason to get it done. I have a perfectly healthy older brother.

As for your second question, I truly don't know. I've thought about whether they would take me back of they could, but I won't ask. I don't blame them for my disease and don't think it'd be fair to put them in the position to have to answer that.

Well it likely depends on other factors. If they (or you) are religious, you might heavily lean towards no based on that.

That being said, I think saying yes is a totally respectable answer! Even from your parents, it clearly has nothing to do with the future person the baby will be become.

I know my mom is anti-abortion except in instances of disability for the baby, so I truly don't know. Either way they've given me the best life they could and I wouldn't want to be anyone different.

Sheesh, little blunt with that first one

It's a common question though and I don't mind answering it.

Hello, does your fragile skin make your life harder than an average person?

Definitely so. I always have to be careful with heat, infections, friction, lots of little things most people don't think about. But I adapt.