I have been in pain since I was born due to my skin condition, Epidermolysis bullosa. AMA

For a light question, what is like having such an awesome sister? :)

She bakes a lot of awesome food, and is getting a masters degree in math of all things.

Analytics

poppycock

haha you said cock

http://5secondfilms.com/watch/cockpit

How does having sex feel like? Is it a pleasurable pain down there?

Lordy, I really need to just post the answer to this in the info section. I've been asked this like a dozen times.

Aww) that is cute, guys)) wanted to ask how are you dealing with all this pain? Also, What was the best day of your life in relation with EB? I hope you'll get better soon) I have skin condition myself, so I kinda can imagine how hard it can be(

The best day would have to be when I learned that two boys had been completely cured of their EB, it made my heart soar.

Hey! So I have a friend of a friend who is currently doing research at the University of Minnesota on this exact condition! He said that they are actually very close to a breakthrough and are in consideration for a Nobel prize! You should think about contacting them to see if there is anything you could participate in!

That's awesome! PM me details and I'll look into it!

OP, please follow up with what happens!!

will do!

are you constantly on pain medication?

does it affect.......everywhere?

I've found that typical pain medication such as ibuprofen have little effect on me after use all these years. I also prefer not to even try stronger prescription pain meds from some sad stories I've heard.

It does affect all of my skin, but it is concentrated on my lower legs, ankles, and occasionally my armpits. However, I have had injuries and scarring just about everywhere on my body.

OK I'll just be blunt, how is your penis/vagina affected?

haha, I knew it was a matter of time...

I'm a guy, and luckily that specific area is more or less perfect healthy, small spot now and a again, but I've been lucky in that regard.

However, the area around it, the upper thighs, due to friction are more frequently scarred.

You should have said you get so much penis friction it's always blistered! You have to think ahead man!

Dernit. I missed a great opportunity it would seem

I'v been on narcotic painkillers for the past 4 years or so on a daily basis due to a chronic inoperable pain condition. IMHO, thy arnt that big of a deal and take me from being in pain equal to recovery from your wisdom teeth being pulled, to pretty much fine. I'd give them a shot if you know you will never need to/be able to go off them. Unfortunatly I'll never be able to function without strong painkillers anyway, so physical dependence is sort of a non issue.

Funny story, my wisdom teeth being removed was a breeze. All four impacted, I was eating solid food half an hour later. No painkillers required and swelling down in less than 3 days.

I don't want to tell you how to manage your condition but taking NSAIDs chronically is much worse than taking opiates over a long term. Honestly, lower doses dont cause the dependency you hear about. Its worth considering is all I'm saying

Edit: This is a post I made farther down to support what I said:

NSAID toxicity

Or if you just want one: http://jrheum.org/content/29/4/650.full.pdf

Here's some data supporting opioid use in chronic pain

And another study supporting opioid use for chronic pain

Here's a small excerpt:

Patients with diverse pain states could potentially benefit from opioid therapy. Serious adverse effects are rare, and doses generally remain stable, if the pain syndrome is stable. Addiction (defined as loss of control over the drug, compulsive drug use, and continued use of the drug despite harm) is rare, particularly if there is no history of chemical dependency.

Thanks for the concern, I'll take it into consideration, but I've made it twenty years without them and I plan on another sixty plus in the same way.

Ever try cannabis?

Edit: Never mind, I see it's already been asked.

2 questions permeate this thread, weed? sex? it's gotten funny

what about smoking weed, i bet that helps

With the research that has been done on the subject, it has been shown to serve as a great pain reliever. I wholeheartedly support its medical legalization.

are you used to pain now?

Incredibly, despite constant pain, my threshold for new pain is very high and I can manage it very well.

For example (somewhat graphic) While wearing sandals once, my toe was run over by an office chair, taking off most of the skin, this hurt for maybe a minute or so before becoming "background pain" as I call it. it still hurt, but nowhere near where it "should"

How did you react as a child? Did your parents have any particular way to comfort you from the pain?

I didn't really understand it well as a kid, all I knew was I was scarred and other kids weren't. I knew I had a skin condition, but I couldn't do anything about it.

My parents used to be the ones who bandaged my injuries, I couldn't have asked for better. They love and support me in all my endeavors, I couldn't ask for more.

[deleted]

I want you to know how I touched I am that you shared this with me. I'm the first of my family to have it and I certainly don't wish to pass it along. Luckily though, there's research being done all the time and hopefully when the time comes I'll be able to have kids who won't have to bear the burden I do.

You, and your whole family are in my thoughts and prayers. I will be strong for you and I know you'll do the same. It can be beaten and the future is bright.

How do you sleep at night? (non-rhetorical)

usually on my stomach, whatever takes pressure off my legs best, as that's the source of most of my pain. Sleep is great though, I enjoy it.

Whats your daily schedule for this

Keep injuries clean, and keep them bandaged daily. Other than that, there's nothing I really can do, so I live my life.

Do you have to buy special bandages? How much of a time and money handicap is this condition on your life? Separated from time and money, are there any activities you just cannot enjoy (slides/water slides maybe) because of your condition?

It's not easy. It's at least an hour of time to clean and bandage. Luckily buying supplies in bulk can reduce cost.

I'll probably never ski or snowboard (not like where I live has mountains, but still), the boots need to be securely strapped on and that'd be too much pressure.

Does it affect your ability to maintain focus?

Since I've grown as used to the "background pain" as possible I can keep focus very well. However, occasionally the injuries I have will "spike" and hurt immensely for a few seconds, these do draw my focus while they happen.

Have you ever tried Marijuana or anything like that? I only ask cause I it reminded me of this: http://www.youtube.com/watch?v=F9G5-ai2RU0

Also. What gives you motivation to continue on in life knowing that you will be in pain all the time? For what I assume is the rest of your life. You are a much stronger person than me, I don't think I could handle it.

from what research has been done, yes, marijuana would help my pain. It has actually done wonders in medical cases far beyond just EB. I support its medical legalization 100%.

My motivation is the same as everyone else's, Family, love, passions, creativity, etc. I love to write and tell jokes, I really just love making other people happy, and I want to continue doing that.

I suggest giving it a try if you ever get the chance, and you are not morally opposed to it. I know personally of a friend who has a great deal of success in using it to deal with his arthritis pain. I personally don't partake, but I'm glad it works on those who do.

Thanks! I think I will. I appreciate the care and concern. I hope your friend is able to manage their pain.

Are you male or female?

Have you ever tried dating someone? If no, is it a possibility for you or it completely off the table?

Have you ever had sex?

Is having a child possible?

Guy, yes I have tried dating, luckily my type is the kind of girl who wouldn't be that shallow. Having a child is totally possible, its not like I lack sperm or anything. However, before bringing a child into the world, I'd want to know whether they'd have my EB as well, I wouldn't put this burden on anyone, especially my own child.

I'm perfectly healthy and haven't had sex, nothing to be ashamed of

good to know!

mastrubation. How does it work for you? Is your hand skin strong enough?

as far as I know, same as everyone else. Hands are relatively unaffected for the most part.

I wouldn't put this burden on anyone, especially my own child.

I don't want to be rude, but... does this mean you think it would have been best for your parents to abort you if they knew you will be born with this awful condition?

I've been asked this already, and my answer remains absolutely not. I love my life and by the time I'm ready to have a child I feel strongly preventative and curative measures will be in place such that I can be confidant I won't be passing this on.

Is there any special care that your teeth require?

I have crowns on all of them and will be getting a larger set soon. Thanks to the amazing work my dentist did on my crowns, regular upkeep is just fine.

Fun fact, my crowned teeth are strong enough to bite through normal teeth! (not like I need to)

That is a fun fact! In a biting competition you would totally win!

I hope never to be in a "biting competition"

but I'd totally take gold

you should think about it. it could be epic.

Will do. and yes, it would

Do you tend to get a lot of skin infections where it blisters? Also, a kind of personal question, are you able to have sex or is the friction too painful?

luckily, my immune system is top notch, rarely get sick or infections. Friction's not too painful as long as its not too dry of an environment.

How do you cope?

I'm extraordinarily lucky in that I have a loving, supportive family. As far as coping with the pain, I bandage my legs daily, which helps reduce the pain and helps protect against further injury, but doesn't provide a perfect defense against either.

Also, like any pain, permanent or temporary, keeping my mind off it whenever I can helps.

/r/meditation

Ha, I've mastered taking my mind off it, and that only works so well for so long. Thanks for the link though!

Thanks for the AMA

1) Do you have days when your condition doesn't bother you?

2) What are your favorite hobbies?

3) What industry do you plan on working in?

Of course! The more people know the better!

1. It's always a factor, some days less than others though.
2. I love video games, writing, cooking, reading, etc.
3. I want to be a video game designer, I'm currently writing novels, but I'd love to make games one day.

With the strength you have developed through managing your chronic condition I have no doubt you will one day be a video game designer!

Thanks! I'm on my way and have made several plans on how to get there!

That is awesome! I really hope you get to do something you thoroughly enjoy. You sound like an awesome person!

Thanks!

Thank you for doing this AMA. With respect, my question is: If your parents had been able to confirm your condition before you were born would you wish to have been aborted?

absolutely not. I love my life even with this burden.

My immediate thought after reading the title:

You merely adopted the pain, I was born in it.

Bane is awesome

Was your disease ever the subject of ridicule in elementary school? Kids can be cruel so I wouldnt put it above them.

Condition please if you would, and surprisingly less than you'd expect. I got called a cripple once, but jokes on them, I can park wherever I please now.

I looked at photos. It looks nasty. I hope you can get better soon. What do you study in college?

It's not pleasant that's for sure, but it has completely desensitized me to gore in general, Saw? forget about it.

I do too, there's promising research being done and two confirmed cases of bone marrow transplants curing boys much younger than me, I hope that can lead to more availability to treatments and a future cure.

I study creative writing as a major and am minoring in digital media art, I want to be a video game designer when I graduate! I've even begun working as a QA tester for a very large video game deveoper, my NDA prevents further details, sorry!

What is something you have learned, due to your condition, that you think could be useful to other people in their lives?

Let nothing stop you from being the person you want to be. I could have quit so many times, but damn it, I've got things to do and a future to grasp and enjoy.

Has your condition prevented you from doing something that you've always wanted to do? e.g. sports

It did as a kid, but now I don't let it get in the way of things I want to do. However, I've thought about a tattoo, and my dermatologist said, "I'll tell you what I tell everyone, skin condition or no, that's a stupid idea."

What was that hardest thing about childhood?

Not being able to really do anything about it.

When I got old enough I took over taking care of my injuries and started raising awareness and money for research.

From what I have read, you seem like an amazing person. It's individuals like you that show humans are capable of adapting to almost any situation. I can't even begin to imagine what it must be like to live with constant pain, and here you are, doing it every day. Just one question:

When you do have pain that you think is unbearable, what does help you get through it?

My family, hands down.

I used to do IT at a school with a child that had this. He was always in a wheel chair, and always had bandadges around his body. I hooked him up with a laptop and helped him out a few times. Awesome kid, unfortunately he didn't have many friends. I truly feel sorry for you in the fact that you have to deal with the daily pain, and I hope a cure comes along.

I do too, there's promising research being done and the future is bright. I truly hope your friend is doing well, I know it isn't easy to get past those first impressions and I know your caring meant the world to him.

if you weren't diagnosed with this and could do any sport you wanted, what would it be?

Hmm...good question. The sports I enjoy playing are the ones I can do, disc golf, golf, archery...I guess I'd go for broke and play rugby.

Do you think that, over time, you've become desensitized to much of the pain? "Gotten used to it?" I suppose.

I think I've hit my ceiling on getting used to "background pain" But it has really heightened my pain threshold. I told a small story in an early comment about it.

Thanks for doing this AMA. My friend's daughter hs EB, she's 4 now and it's heart-breaking to see her in such pain, but she doesn't feel sorry for herself and is an inspiration to everyone who knows her.

It's great that you're at college and getting on with things, you too are an inspiration to us all.

Good luck for the future and keep positive.

Thank you. Positive outlook is certainly something I believe in and it helps me everyday.

I somewhat recently watched on of those documentaries on Netflix about someone living with EB, it looks absolutely dreadful and I hope you don't have too much trouble keeping your chin up.

Anyway, I was wondering, apart from the obvious problem of the blisters and scarring, is there any way it's affected you that wouldn't immediately come to mind for someone that knows nothing about it?

The whole teeth lacking enamel and nails falling out. It doesn't happen with all EB patients (some lose their hair and I have a full, thick head of it)

Some people I've known for years are shocked when they realize I have no finger nails.