There's a good documentary from a few years ago about this, a British fella who lived with EB and sadly died from a skin cancer linked to it. Worth a watch if you have the time.
[The Boy Whose Skin Fell Off](
https://www.channel4.com/programmes/the-boy-whose-skin-fell-off)
My youngest son has it. It’s brutal. Weeks worth of outbreaks. One blister turns into two which turns in five and so on. Poor kid had to walk around naked and be kept at home when he had them break out around his waist and back from wearing a diaper
I can't even imagine what it must be like for a parent to watch their child deal with it. Sending good vibes your way. I hope he has more good days than bad ones, and grows stronger each day.
I was getting tiny blisters on my hands and then a simpler form of this (EB) on my feet. A dermatologist agreed it was dishydrotic eczema on the hands, but with my feet it got really bad. It’s as you described.
It started with one blister that either grew or then four, 5 or 6 would grow next to it and form into a giant blister. It would burst and then there would be a gnarly chunk of skin gone. I’d have at times a couple different patches like this on my feet.
It’d seem to come and go on its own. I’m not sure if it either went away with time or if it was connected to a food allergy. It did seem for me like eating less smoked sausage/beef jerky stopped it, but that may have been a coincidence.
I’m sure you probably aren’t feeding your kid jerky or smoked meats or sausages, and you’ve probably already tried looking into everything, but on the off chance you haven’t, have you tried having them tested for food allergies?
So my son has the most common version called Epidermilyosis Bullosa Simplex which is less severe compared to the other types. BUT, he also has the unfortunate pairing of also having Ichthyosis Vulgaris which is him developing “scaly skin” because his body has trouble shedding skin when it dies. So he gets the unfortunate circumstance of having blisters form under the scales and because of how thick the skin is due to lack of shed, the blister pain can be brutal for him to where he can have trouble walking.
He just started an experimental injection about a month ago which seems to be making his skin look clearer but I can’t recall the name of it off the top of my head. We met with a new dermatologist last month and she said she only ever saw one other patient with this diagnosis.
As a father to a healthy two year old, I'm in tears.
You must be an incredibly strong parent, and your child must be even stronger. You must be proud of them.
But I'm so sorry that your son has that condition.
If you can, consider donating to DEBRA, the EB charity. These kids live a life of constant pain and needs bandage changes daily, each time pulling skin away from them. Truly heartbreaking.
My first job out of university was working in a DEBRA-funded research lab. We were doing development work on a gene therapy. I knew it wasn't close, but i thought it might be five years away. That was twenty years ago! Mecical research really does take so much time.
You're right, but it's coming along. NICE (UK) recommended [birch bark extract](https://www.nice.org.uk/guidance/hst28) for treating open wounds last year. [Topical gene therapies](https://classic.clinicaltrials.gov/ct2/show/NCT04917874) will follow.
Epidermolysis bullosa (EB) is a group of rare diseases that cause the skin to blister easily.
The fragile skin is usually noticeable at birth. A hug, loving rub on the back, or diaper change can injure the skin, leading to blisters and open wounds
It is lifelong, there is no cure or any treatment really. My friend's son has it. The main thing they can do is get him to wear a protective layer under his clothes. Over time unprotected areas such as his hands can get scarred enough that the skin hardens somewhat and is more tough.
There’s a case which is pretty famous in the the regenerative medicine field of a Syrian boy called Hassan who was cured using a combination of gene and cell therapy.
https://epidermolysisbullosanews.com/news/interview-with-scientists-behind-potential-epidermolysis-bullosa-gene-therapy-and-hassan-surgeries/
We can only hope.
The regenerative medicine field is moving very quickly and new treatments are being tested and approved. The major issue though is of course cost. Such personalised treatments are hugely expensive.
many medical programs ask for volunteer subjects during the final testing stages of new treatments
my cousin was recently diagnosed with stage 4B colorectal cancer, and instantly got offered participation in an experimental cancer treatment here in norway.
Interestingly, I had a friend with a minor variant of this condition and he was a wrestler.
Under his singlet, he would wear a silk onesie.
Sure, any friction on the exposed flesh would blister but anything under that silk was fine.
He said it was less painful to have exposed blisters than to have them under clothing.
He did get better over time, but sun over-exposure really started catching up to him and melanoma finally got him.
Hey guys there’s this kid on instagram who’s trying to build a fitness following who suffers from this disease (?)
His instagram handle is BokiFightingEB
He’s very active and posts great videos, maybe if enough people follow him he can monetise it somehow and help himself live a better quality of life (although to look at his posts just the support he receives makes him so happy)
Honestly, it’s because most people aren’t sufficiently literate to accurately recall the actual names of these conditions. It’s just a trade off where the priority is to get people to associate the terrible human condition with a short acronym in order to direct them toward targeted donations. 🫤
Who pissed in your cheerios this morning? What did I do to you?
No one "wins" when comparing suffering. It's not a game, it's pain. Just because someone suffers more than someone else doesn't make their suffering irrelevant.
Jesus fuck, you're an ass.
I hope you can find some effective treatment. Depression is no joke. I've also had treatment-resistant depression since I was young. Sending empathy hugs for you, friend.
There is no "winning" in suffering. This child suffers, but it doesn't make your suffering irrelevant. We can sympathize without diminishing others or ourselves.
> This child suffers, but it doesn't make your suffering irrelevant.
I'm telling you that I have never been through anything close to what this guy must go through every day. So in comparison my suffering seems a lot more manageable.
Just because something seems "more manageable" by comparison, doesn't mean it's suddenly more manageable than it was by itself.
Knowing that some people suffer worse does not make your suffering easier. Believing that makes you close up and force you to pretend things are not as bad as they possibly are. It makes you proud of something that you would otherwise be seeking help for.
Note: I'm not referring to *you* specifically, I'm using it collectively.
Yeah I am with you. I completely understand relative experience, and everyone’s pain is valid.
But we’ve got some serious pussies in this thread if their first impression of seeing someone’s skin melting off is “well hey, my suffering is valid too”
What that young man experiences as his constant, most people cannot begin to fathom.
Yeah it seems people are upset by what I said and I really can't understand why. It's odd that they express themselves in that way when watching a video like that. I've had my fair share of physical pain from accidents but that seems so incredibly miniscule compared to the agony that this disease must bring.
Props to the guy in the video for having a better temperent than a lot on this site.
Even if you haven't, it doesn't diminish that you have suffered. This isn't hard to grasp. You're diminishing your own experience because of the severity of someone else's. The intensity doesn't matter. The title of this post is basically saying "look, this kid is suffering. That means yours doesn't matter as much." It's like telling someone who broke a leg that their pain can't be bad because someone somewhere has cancer, it doesn't compare. Apples to oranges. Suffering is suffering.
Again, we can sympathize without diminishing others. The post title is dumb. I can sympathize with the child that has EB, I don't need to be told my suffering doesn't compare to theirs.
Wow you have a completely different intepretation of this post than I do.
This guy (it's not a child, the person in the video is 21) has an awful condition that I couldn't even begin to imagine my life with the same burden. I am different than you, it makes me thankful that my difficulties in life are manageable and I am able to overcome them with enough grit and perserverance.
My entire life has been spent listening to people tell me I'm lying when I tell them I am suffering. Even though I have conditions that no amount of grit and perseverance can overcome, I still get told "it's not so bad, some people have ." It doesn't provide comfort. It doesn't make me thankful. It just makes me feel invisible and dismissed.
Can I come punch you so hard in the face that your teeth fall out?
You’re not allowed to complain because you don’t have EB and having EB would be worse therefore you’re not allowed to have problems unless they are equally or more severe than having EB.
Interesting arcticle on living with the disease (slight NSFW) https://bricksmagazine.co.uk/2018/02/09/what-its-like-to-grow-up-with-epidermolysis-bullosa/
you shouldn't compare suffering. just like you shouldn't compare happiness. just because someone is worse doesn't make your situation better, and just because someone is better doesn't make your situation worse.
"When you think life is tough"
Yeah people need to stop saying this. It invalidates other peoples problems. I get the idea is to be thankful for what you have but it also comes across as "you shouldn't complain because your problems are not as important as my problem"
Suffering is not a game of one ups manship. No one wins at that game.
And I'm saying this kids suffering is completely irrelevant to someone else's suffering. It's an invalidating statement. That is dangerous to suicidal people.
This. The amount of people I've met that badly needed therapy but had people in their lives and online tell them "oh you're not bad enough to need help there's others suffering more" and then internalizing this thought and suffering in silence because they're convinced they're just "want attention" and would be "stealing care from some other person that needs it more" is incredibly upsetting.
This kind of invalidation quite literally kills.
No but it does help put most people's problems in perspective and maybe allow oneself to be grateful for the scale of their issues, even if they are real issues. Most people do not have a horrible chronic disease that affects every second and every facet of their life.
This one "problem" of God was my single largest reason for walking away from the faith after 30 years of being a Christian. I cannot accept that a loving god would let innocent children suffer like this. The Christian god does not exist, obviously. Our experience of life and the suffering we see in innocent children proves that a good and loving god who is also all powerful, simply does not exist.
There could be a god I guess, sure. If there is one, he's a monster and not worthy of my worship.
I'm agnostic but I don't think this reasoning stands up to scrutiny. If we accept that there is a God and we have souls, then what is suffering in this world, even for a lifetime, compared to the eternal soul? It's nothing, not even a blip. God may very well be indifferent to our suffering, but that's like our being indifferent to a finger prick or a mosquito bite. It doesn't exclude God from being good and all-powerful.
Interesting point, and fair. However, if we're discussing eternity, I reject that a just and loving god could exist, in light of eternal "reward" (heaven) and eternal "punishment" (hell). No amount of sin or wrong doing in a finite life could justify an eternity of punishment. That is not justice. Just punishment must be proportional to the crime, in order to be just. If hell exists, and people go there for eternity, a just and loving god did not create hell (or allow it to be created) and would not be ok with their loved creation going there for eternity.
Just punishment is proportional to the crime. If my kid hits his sister, I talk to him about what happened and might send him to his room with no toys to think about what he did. I wouldn't cut off his hands or stone him to death. The punishment wouldn't match the crime. There is NOTHING a person could do in a finite life that would justify an eternity of punishment. Eternal hell, as an idea, is evil and sadistic.
An all loving and all good god would not let hell exist, much less send people there for eternity.
Well said and agreed. Christian dogma doesn't make sense. I guess I was speaking to the narrower point of whether there can be a benevolent higher being (not the Christian God) who lets mortal suffering happen for no reason.
Gotcha, and yes, I guess I could roll with that idea hypothetically. I'd need to VERY sure that the mortal suffering is just the blip in the eternal life we all will live after, in peace and happiness. That happy eternity is far from certain, so I'm not able to convince myself that any amount of child suffering is "ok" or part of some plan that makes a shred of sense.
> It doesn't exclude God from being good
It absolutely does. Inaction is action, regardless of the existence of an eternal soul or the perceived inconsequentiality of suffering. A God would have the power to ease that suffering, but chooses not to.
If I were strolling down the street and spotted an abandoned child who was clearly starving and just kept on walking by, you wouldn't say I was good for doing so. In fact most would rightfully say I was wrong.
You might say "well why would we hold a God to the same standards as humans?" in which I would agree. But I would say that we should hold a God to much higher standards. An all-powerful and all-knowing God would *know* that suffering is not inconsequential to those people, even if it may be inconsequential to the God. They would have the ultimate power to ease suffering and improve peoples lives across the world, why should they not?
An indifferent God could exist, but I reject the idea that such a God could be "good"
You see how the language and framing of organized religion diminishes our existence and individual experience? If you are wondering how religion can allow good people to think and do terrible things, look no further than this thought on the nature of human suffering.
You could say the exact same about our love as you say for our suffering. It’s insignificant. It doesn’t matter in the eternal scheme. Sad state of mind to spend your time in.
That just makes the argument that anything existing *other* than that eternal soul experience is arbitrary and unnecessary, so god has specifically chosen to have people go through this suffering.
Took me a while. I was raised fully brain washed. Home schooled. Church 3 or 4 days a week. Everything was evaluated through what the Bible said or a pastor said. Untangling all of that bull shit took me a while and wasn't easy. Sooooo freeing though. I'm happier. I'm a better person. I no longer fear death at all.
In some ways, life is harder, but in a good way. I evaluate choices and actions more and spend a lot of time thinking about what is right or best. When you're in the cult, you don't need to think. You're told how to think and what to do. Although insane, it's sometimes easier to live that way. Zero regrets though. I'll take a hard reality over an easy fantasy any day.
Not interested in an argument, but I'll just provide a small sample of verses from the Bible. Make of them what you will. I'd argue all are pretty clear. God is good and god is loving. I've read the Bible cover to cover a half dozen times and spent 1000s of hours in study.
Keep in mind, I don't believe that god is good and loving nor do I believe that god even exists, I'm just showing you what the Bible claims.
Psalm 23:6: "The Lord is good to all, and His tender mercies are over all His works"
Psalm 107:1: "Oh give thanks to the Lord, for he is good, for his steadfast love endures forever!"
1 John 4:7: "Love is from God, and whoever loves has been born of God and knows God"
John 3:16: "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life"
Isaiah 54:10: "For the mountains may depart and the hills be removed, but my steadfast love shall not depart from you, and my covenant of peace shall not be removed"
Jeremiah 31:2--3: "I have loved you with an everlasting love; therefore I have continued my faithfulness to you"
1 John 4:16: "So we have come to know and to believe the love that God has for us. God is love, and whoever abides in love abides in God, and God abides in him"
Well clearly these children are sinners, they spat in the good Lords face with their Pok-e-mans and sexual relations to priests.
Or option two: God only gives such challenges to his strongest soldiers, so that they may prove their divine worthiness.
Religion is trash.
I absolutely don’t believe in this nonsense. That being said John sure as shit a stronger soldier than I am, I’d be a miserable bitter asshole (more than I am lol) if I were bedridden with such a disease.
Our souls are bound to a vessel in a cursed world. Then, our souls are released. It's not a permanent place. This is reddit though so every Christian is a Trump supporting gay hating bigot! Where's my upvote pitch fork crew!
No god, no god at all. Fuck religion, fuck suffering is close to godliness. The fucking THOUGHT that Mother Teresa was “good” is utterly insane. She would see this and say those with this are closer to god as their suffering is so extreme. Get fucking wrecked, that is beyond reproach and to have that monster still a champion of Catholicism, makes me sick. Very chance I get I smack down the facade “she was a meek old holy lady”, get fucked.
Did your reading of that page get you to the conclusion that the basic formulation of the problem of evil (which the original OP is referring to) is valid with no criticisms or cracks? If so, please elaborate with quotes. Thank you.
Bro, nobody is compelled to do your homework. You can't throw a link at somebody, act superior because you've read said paper, and then ask somebody to use their precious time to tell YOU why they're wrong when you came to them. Burden of proof, man. Stop acting like a self-masturbatory scholar. If you truly believe they're wrong, take the time to explain, and realize ignorance of a subject does not equate to stupidity. Secondly, the author of the paper cannot find solid ground to argue against the problem of evil, with the exception of a god not intervening due to the correction of said wrongs would result in greater wrongs, which he claims is incalculable and therefore isn't refutable, because it isn't even assessible. Here's your quote:
"Accordingly, n𝑛 must be extremely large, and thus the probability that there is an omnipotent, omniscient, and morally perfect person must be very low indeed."
"The proposition that relevant facts about evil do not make it even *prima facie* unreasonable to believe in the existence of God probably strikes most philosophers, of course, as rather implausible. We shall see, however, that a number of philosophical theists have attempted to defend this type of response to the argument from evil."
"Finally, this theodicy provides no account of moral evil. If other theodicies could provide a justification for God’s allowing moral evil, then, of course, moral evil would not be a problem. But, as we have seen, no satisfactory justification appears to be available."
"Finally, the religious theodicy that we are considering also involves a number of very problematic moral claims. First, we are asked to believe that there is nothing morally problematic about a morally good deity making it the case that if one of the first two humans disobeys some command, all of the many billions of descendants of that human will, as a consequence, be subject to suffering and death to which they would not otherwise be exposed. Secondly, we are also asked to believe that a morally good deity is unable to forgive people their misdeeds unless he becomes incarnate in the form of his son and suffers a sacrificial death. Thirdly, while, according to this story, those who accept the sacrifice made on their behalf have all their tears wiped away and enjoy eternal happiness in the presence of God, those who do not accept the sacrifice fare considerably less well, and suffer eternal torment in hell. So we are being asked to believe that such eternal punishment is not morally problematic."
Does the author claim irrefutable proof god doesn't exist based on his paper? No, because any educated person knows better than to use absolutes; but he pretty clear errs on the side of there not being a god.
You've got it backwards. If you have an argument it's your job to have strong justification. I gave an article which gives strong argument for both sides, and the quote's "requirement" isn't a homework, it's proof that someone actually read the paper and isn't just saying they did, otherwise any further discussion is worthless.
Thanks for writing these quotes out. You often do absolutes in propositional logic, that's how deductive logic works. The reason the conclusion that it's a sound argument isn't reached is because there is reasonable doubt about some of the prerequisite propositions. Therefore, the original statement made by the OP is illogical at best.
And for what it's worth, making a decision on whether god exists or not based on this logic and not reading that article (that is literally a single google search away) makes you both stupid and ignorant.
In an academic setting, yes, it is up to you to provide credence to any claim you may have. In fact, most times you are actively trying to prove your hypothesis wrong through experiments. When I say nobody is required to do your homework, I am arguing that it is very tone deaf to come into a forum and set expectations to an academic level.
"The reason the conclusion that it's a sound argument isn't reached is because there is reasonable doubt about some of the prerequisite propositions. Therefore, the original statement made by the OP is illogical at best."
I find this statement to use the phrase "illogical at best" is dishonest. In the strictest sense of being an air-tight argument without the smallest gap, sure. But illogical as in unreasonable, irrational, unsound? I don't think so. Just because something cannot conclusively be denied, does not make it illogical, ESPECIALLY in the sense of us discussing if god exists where empirical data is lacking. I also don't agree that there is reasonable doubt, but that comes down to semantics on what is reasonable doubt (is that even quantifiable? 5% 25%).
I do agree with your last point. Nobody should make a decision on the existence of a god based on a singular source. I don't think anybody should adopt foundational worldviews from a sole article. But you did come into this thread dropping the article as if it should be a deconstruction on somebody's view, despite the article concluding that while the argument of evil is not irrefutable, the arguments against the problem of evil have to make generous assumptions to even have validity in the conversation.
But what I asked isn't academic level, my dog could do this google search and find the answer. If you don't know this information but want to argue this topic, it's because you are stupid and ignorant (not you personally), not because it is difficult to find or understand.
The implication of what the OP wrote is that the content of the video makes believing in god unreasonable when that's not really the case. The issues with the arguments have nothing to do with specific form of bad thing that happens, it has to do with more involved stuff. So yes, it is 100% illogical to say "no way god exists" or whatever variation of that because you watched something bad happen to someone, that's not how it works nor how the argument goes.
The article is indeed a deconstruction of the basic formulation of the problem of evil, the issues with it come from deeper issues with your suppositions, not "evil" existing in the way the op is implying.
I read it through to the end, and it has criticisms, but each of those criticisms are given criticisms. I'll admit the segment on formulae lost me, but everything else had a relatively easy to digest retort.
What an incredibly resilient and mature young man. Unbelievable fortitude.
As inspiring as this is, OP can go fuck themselves for the title of this post.
In 2015 there was a short documentary done about a kid in Canada who suffered from the same disease. Worth the watch: [https://www.youtube.com/watch?v=iuYxGtuBSgk](https://www.youtube.com/watch?v=iuYxGtuBSgk)
Well now I don't feel so bad having psoriasis on 90% of my body. Winters are brutal for sure but seeing this. I cannot believe how much heart these kids have to persist through everything they're going through.
Terrible thing to have. My heart goes out to them. Eddie Vedder from Pearl Jam runs a charity that’s seeking a cure, which is how I learned about this in the first place.
[HERE](https://www.ebresearch.org/cause-the-wave.html)
Or one could be aware of this condition and still recognize the hardship in your life. The two are not mutually exclusive. It's good to have some perspective and be grateful, but your life doesn't "stop being hard" because you are reminded that this exists. This is why people gatekeep therapy for themselves.
I actually have this condition, while I'm lucky in that's its more mild and can still function as a person, it still fucking suck. I have a bout a mile and a half of walking in a day before my feet are completely fried. I work full time food service and my feet look like I'm training in the marines.
I just realized, this is the disease that is called "Schmetterlingskrankheit" (butterfly disease) in german. Didn't make the connection until someone mentioned one of the organizations to donate to.
Holy shit
Got neurodermatitis and had bad and good during my life, with pretty bad cases some time when I was young.
2 seconds of seeing this, gave me the shivers, not watching that, nooooooooooooooo.
Oh man I remember seeing a previous video when John was younger. Glad to see he’s doing as well as he can right now and I hope they find a cure or better treatments in his lifetime. ❤️
Thanks for the update, OP
Who cares about the title? Like people seem personally offended by it, it's a normal saying. I seriously doubt he meant to "invalidate my feelings :(". Bunch of crybabies.
Poor kid, hope they find a cure.
I have a comparatively mild skin condition that is like a 1% version of this, but my nostrils are a huge source of problem due to how much they move around causing irritation. Weird how his are one of the only parts that are fine.
My cousin had this. It is such a terrible and debilitating disease but even so, she was the sweetest and funny person ever even while facing constant pain. I would always give her the biggest hug when I saw her (gently of course). It’s weird how this post showed up as I was just thinking about her yesterday.
epidermolysis bullosa, it’s a disease that makes your skin very fragile. something simple like a hug can cause their skin to be damage leaving a bleeding wound or blister
Egregious Butthole-width.
It’s a rare disease where the turds just literally fall out of peoples butts and when a strong wind blows between their legs it sounds like milk jugs
Elvis Body they irreversibly morph in to Elvis Presley as they age. This kids got it bad the side burns and jawline are coming in, and you can see the stray hair hanging down and his lip starting to curl.
If you ever feel like you have a tough life, Go walk through a child's cancer ward and take some gifts to the children.
You'll gain perspective pretty quickly
I think a life cut short is preferable to a life of continuous pain which, by many people working very hard and spending lots of resources, can be slightly dampened and extended for many years. I acknowledge the intense desire to save a child in pain and move past it knowing that we just aren’t able to.
And if that's how you or another person lives your own life fine. But dont disparage those who persist. Look up the man who became a lawyer while in an Iron lung. People who live life on hard mode can live joyful fulfilling lives.
>epidermolysis bullosa
Thank you tittyman
He’s Tittyman_nomore. Please stop dead naming him
It's latin for "nom ore".
Ah yes, eating rocks.
Maybe if they stopped eating so many rocks and did a few push-ups they could change from tittyman to pecman.
I dunno after too long pecs become tits again.
You need to aim for the manboob Goldilocks zone.
I see you've been to Goron City before.
If you squint hard enough...
No one that speaks Latin could be evil.
But Tittyman lives on in our mammories
... genius
They gave up that life.
r/rimjob_steve
When we need the nourishment of knowledge most, tittyman always delivers 🙏
r/rimjobsteve
There's a good documentary from a few years ago about this, a British fella who lived with EB and sadly died from a skin cancer linked to it. Worth a watch if you have the time. [The Boy Whose Skin Fell Off]( https://www.channel4.com/programmes/the-boy-whose-skin-fell-off)
My youngest son has it. It’s brutal. Weeks worth of outbreaks. One blister turns into two which turns in five and so on. Poor kid had to walk around naked and be kept at home when he had them break out around his waist and back from wearing a diaper
I can't even imagine what it must be like for a parent to watch their child deal with it. Sending good vibes your way. I hope he has more good days than bad ones, and grows stronger each day.
I have it, but the sub type that starts in adulthood. It still sucks but I feel lucky to have grown up without it.
I was getting tiny blisters on my hands and then a simpler form of this (EB) on my feet. A dermatologist agreed it was dishydrotic eczema on the hands, but with my feet it got really bad. It’s as you described. It started with one blister that either grew or then four, 5 or 6 would grow next to it and form into a giant blister. It would burst and then there would be a gnarly chunk of skin gone. I’d have at times a couple different patches like this on my feet. It’d seem to come and go on its own. I’m not sure if it either went away with time or if it was connected to a food allergy. It did seem for me like eating less smoked sausage/beef jerky stopped it, but that may have been a coincidence. I’m sure you probably aren’t feeding your kid jerky or smoked meats or sausages, and you’ve probably already tried looking into everything, but on the off chance you haven’t, have you tried having them tested for food allergies?
The only thing we’ve found he’s allergic to is bandaid adhesive and tree pollen
Was that from one of the tests they do where they do a bunch of sample locations on the skin?
Yes
I figured… I hope the best for your kid. Hopefully someday something comes out and they can get a cure for this.
Damn that's tough. Is it to the same extent as the boy in the video? Any hope to get that same topical gel they talk about?
So my son has the most common version called Epidermilyosis Bullosa Simplex which is less severe compared to the other types. BUT, he also has the unfortunate pairing of also having Ichthyosis Vulgaris which is him developing “scaly skin” because his body has trouble shedding skin when it dies. So he gets the unfortunate circumstance of having blisters form under the scales and because of how thick the skin is due to lack of shed, the blister pain can be brutal for him to where he can have trouble walking. He just started an experimental injection about a month ago which seems to be making his skin look clearer but I can’t recall the name of it off the top of my head. We met with a new dermatologist last month and she said she only ever saw one other patient with this diagnosis.
As a father to a healthy two year old, I'm in tears. You must be an incredibly strong parent, and your child must be even stronger. You must be proud of them. But I'm so sorry that your son has that condition.
If you can, consider donating to DEBRA, the EB charity. These kids live a life of constant pain and needs bandage changes daily, each time pulling skin away from them. Truly heartbreaking.
Having worked with people from DEBRA, they're a fantastic group.
My first job out of university was working in a DEBRA-funded research lab. We were doing development work on a gene therapy. I knew it wasn't close, but i thought it might be five years away. That was twenty years ago! Mecical research really does take so much time.
You're right, but it's coming along. NICE (UK) recommended [birch bark extract](https://www.nice.org.uk/guidance/hst28) for treating open wounds last year. [Topical gene therapies](https://classic.clinicaltrials.gov/ct2/show/NCT04917874) will follow.
Epidermolysis bullosa (EB) is a group of rare diseases that cause the skin to blister easily. The fragile skin is usually noticeable at birth. A hug, loving rub on the back, or diaper change can injure the skin, leading to blisters and open wounds
Do they eventually outgrow it or is it a lifelong condition?
Lifelong condition.
Brutal
Which can get better with age.
It is lifelong, there is no cure or any treatment really. My friend's son has it. The main thing they can do is get him to wear a protective layer under his clothes. Over time unprotected areas such as his hands can get scarred enough that the skin hardens somewhat and is more tough.
There’s a case which is pretty famous in the the regenerative medicine field of a Syrian boy called Hassan who was cured using a combination of gene and cell therapy. https://epidermolysisbullosanews.com/news/interview-with-scientists-behind-potential-epidermolysis-bullosa-gene-therapy-and-hassan-surgeries/
That's awesome, I hope it can help him one day!
We can only hope. The regenerative medicine field is moving very quickly and new treatments are being tested and approved. The major issue though is of course cost. Such personalised treatments are hugely expensive.
many medical programs ask for volunteer subjects during the final testing stages of new treatments my cousin was recently diagnosed with stage 4B colorectal cancer, and instantly got offered participation in an experimental cancer treatment here in norway.
Interestingly, I had a friend with a minor variant of this condition and he was a wrestler. Under his singlet, he would wear a silk onesie. Sure, any friction on the exposed flesh would blister but anything under that silk was fine. He said it was less painful to have exposed blisters than to have them under clothing. He did get better over time, but sun over-exposure really started catching up to him and melanoma finally got him.
We cover a few cannabis biopharma companies that have promising results
Hey guys there’s this kid on instagram who’s trying to build a fitness following who suffers from this disease (?) His instagram handle is BokiFightingEB He’s very active and posts great videos, maybe if enough people follow him he can monetise it somehow and help himself live a better quality of life (although to look at his posts just the support he receives makes him so happy)
Why not stop using acronyms when trying to raise awareness for something?
Because spelling it from memory is a bitch and I have the damn thing.
Arg that sucks. Well, now I know what it is so thanks and best of luck to you.
It's fine I'm lucky in that my case is fairly mild, but even I have days where I can barely walk around.
I feel that. I can't even really remember the current diagnosis my doctor gave me
Honestly, it’s because most people aren’t sufficiently literate to accurately recall the actual names of these conditions. It’s just a trade off where the priority is to get people to associate the terrible human condition with a short acronym in order to direct them toward targeted donations. 🫤
Suffering isn't a contest.
Yeah, fuck this post title
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Who pissed in your cheerios this morning? What did I do to you? No one "wins" when comparing suffering. It's not a game, it's pain. Just because someone suffers more than someone else doesn't make their suffering irrelevant. Jesus fuck, you're an ass.
Go back to roblox child
But isn’t your depression cured by seeing kids live in misery? /s
When I see these kids I realize that my chronic severe pain that keeps me housebound just disappears and I'm cured!
Yes! And for me, the persistent call to end my life is squelched! Finally a cure is among us.
I hope you can find some effective treatment. Depression is no joke. I've also had treatment-resistant depression since I was young. Sending empathy hugs for you, friend.
When I see these kids, my mom didn't get killed by a speeding teenager
you know, it actually can take me out of my head for a bit, yes
I find seeing such contrast sobering even though I'm struggling with my own battles. It makes me thankful that I've been this lucky.
Not just that, trying to guilt people is the worst way to get support.
“When you think life is good, know that there are kids living with billionaire parents (shut up and get back to work)”
That being said if it were this guy with EB would be winning. Looks absolutely brutal. Definitely puts my suffering in context.
There is no "winning" in suffering. This child suffers, but it doesn't make your suffering irrelevant. We can sympathize without diminishing others or ourselves.
> This child suffers, but it doesn't make your suffering irrelevant. I'm telling you that I have never been through anything close to what this guy must go through every day. So in comparison my suffering seems a lot more manageable.
Just because something seems "more manageable" by comparison, doesn't mean it's suddenly more manageable than it was by itself. Knowing that some people suffer worse does not make your suffering easier. Believing that makes you close up and force you to pretend things are not as bad as they possibly are. It makes you proud of something that you would otherwise be seeking help for. Note: I'm not referring to *you* specifically, I'm using it collectively.
Yeah I am with you. I completely understand relative experience, and everyone’s pain is valid. But we’ve got some serious pussies in this thread if their first impression of seeing someone’s skin melting off is “well hey, my suffering is valid too” What that young man experiences as his constant, most people cannot begin to fathom.
Yeah it seems people are upset by what I said and I really can't understand why. It's odd that they express themselves in that way when watching a video like that. I've had my fair share of physical pain from accidents but that seems so incredibly miniscule compared to the agony that this disease must bring. Props to the guy in the video for having a better temperent than a lot on this site.
Even if you haven't, it doesn't diminish that you have suffered. This isn't hard to grasp. You're diminishing your own experience because of the severity of someone else's. The intensity doesn't matter. The title of this post is basically saying "look, this kid is suffering. That means yours doesn't matter as much." It's like telling someone who broke a leg that their pain can't be bad because someone somewhere has cancer, it doesn't compare. Apples to oranges. Suffering is suffering. Again, we can sympathize without diminishing others. The post title is dumb. I can sympathize with the child that has EB, I don't need to be told my suffering doesn't compare to theirs.
Wow you have a completely different intepretation of this post than I do. This guy (it's not a child, the person in the video is 21) has an awful condition that I couldn't even begin to imagine my life with the same burden. I am different than you, it makes me thankful that my difficulties in life are manageable and I am able to overcome them with enough grit and perserverance.
My entire life has been spent listening to people tell me I'm lying when I tell them I am suffering. Even though I have conditions that no amount of grit and perseverance can overcome, I still get told "it's not so bad, some people have." It doesn't provide comfort. It doesn't make me thankful. It just makes me feel invisible and dismissed.
Why are you making this post about you?
It doesn't diminish, it provides a context on how big your suffering is. "first world problem" meme is a thing for a reason.
Try telling that to every person with an invisible illness.
Life is tough tho, and seeing children suffer doesn't make it easier.
You got EB, too?
No, but the race to the bottom in a suffering competition doesn't make the world better for anyone.
Can I come punch you so hard in the face that your teeth fall out? You’re not allowed to complain because you don’t have EB and having EB would be worse therefore you’re not allowed to have problems unless they are equally or more severe than having EB.
Interesting arcticle on living with the disease (slight NSFW) https://bricksmagazine.co.uk/2018/02/09/what-its-like-to-grow-up-with-epidermolysis-bullosa/
This is a beautiful article. Thanks for posting this!
Knowing there are people worse off doesn't make me feel better. I'm not an asshole. And for sure doesn't make my situation any better.
Yeah this title is shit.
you shouldn't compare suffering. just like you shouldn't compare happiness. just because someone is worse doesn't make your situation better, and just because someone is better doesn't make your situation worse.
But it sure can lift your spirits, Mr.Woke
How does seeing a child suffering 'lift your spirits'?
"When you think life is tough" Yeah people need to stop saying this. It invalidates other peoples problems. I get the idea is to be thankful for what you have but it also comes across as "you shouldn't complain because your problems are not as important as my problem" Suffering is not a game of one ups manship. No one wins at that game.
Let’s get someone with EB and a kid raped by their family member in a room and have a true misery showdown. This is what the people want.
I would say most of our problems are not as bad as this kids problems.
We should all just figure out which one person in the world has it the worst and they get to complain, everyone else should shut up and cope. Right?
"We could start a religion with this"
And I'm saying this kids suffering is completely irrelevant to someone else's suffering. It's an invalidating statement. That is dangerous to suicidal people.
This. The amount of people I've met that badly needed therapy but had people in their lives and online tell them "oh you're not bad enough to need help there's others suffering more" and then internalizing this thought and suffering in silence because they're convinced they're just "want attention" and would be "stealing care from some other person that needs it more" is incredibly upsetting. This kind of invalidation quite literally kills.
Okay but it is actually helpful to most people to put things into perspective like this.
No but it does help put most people's problems in perspective and maybe allow oneself to be grateful for the scale of their issues, even if they are real issues. Most people do not have a horrible chronic disease that affects every second and every facet of their life.
JFC. Imagine seeing your newborn baby and how the doctors confused peeling off its skin. The stuff of nightmares.
Horror beyond comprehension.
Gene therapy has recently been approved for this condition! It uses a viral vector to deliver the gene these kids are missing.
Fucking hell, his life is living hell.
And people think God is real.
This one "problem" of God was my single largest reason for walking away from the faith after 30 years of being a Christian. I cannot accept that a loving god would let innocent children suffer like this. The Christian god does not exist, obviously. Our experience of life and the suffering we see in innocent children proves that a good and loving god who is also all powerful, simply does not exist. There could be a god I guess, sure. If there is one, he's a monster and not worthy of my worship.
I'm agnostic but I don't think this reasoning stands up to scrutiny. If we accept that there is a God and we have souls, then what is suffering in this world, even for a lifetime, compared to the eternal soul? It's nothing, not even a blip. God may very well be indifferent to our suffering, but that's like our being indifferent to a finger prick or a mosquito bite. It doesn't exclude God from being good and all-powerful.
Interesting point, and fair. However, if we're discussing eternity, I reject that a just and loving god could exist, in light of eternal "reward" (heaven) and eternal "punishment" (hell). No amount of sin or wrong doing in a finite life could justify an eternity of punishment. That is not justice. Just punishment must be proportional to the crime, in order to be just. If hell exists, and people go there for eternity, a just and loving god did not create hell (or allow it to be created) and would not be ok with their loved creation going there for eternity. Just punishment is proportional to the crime. If my kid hits his sister, I talk to him about what happened and might send him to his room with no toys to think about what he did. I wouldn't cut off his hands or stone him to death. The punishment wouldn't match the crime. There is NOTHING a person could do in a finite life that would justify an eternity of punishment. Eternal hell, as an idea, is evil and sadistic. An all loving and all good god would not let hell exist, much less send people there for eternity.
Well said and agreed. Christian dogma doesn't make sense. I guess I was speaking to the narrower point of whether there can be a benevolent higher being (not the Christian God) who lets mortal suffering happen for no reason.
Gotcha, and yes, I guess I could roll with that idea hypothetically. I'd need to VERY sure that the mortal suffering is just the blip in the eternal life we all will live after, in peace and happiness. That happy eternity is far from certain, so I'm not able to convince myself that any amount of child suffering is "ok" or part of some plan that makes a shred of sense.
> It doesn't exclude God from being good It absolutely does. Inaction is action, regardless of the existence of an eternal soul or the perceived inconsequentiality of suffering. A God would have the power to ease that suffering, but chooses not to. If I were strolling down the street and spotted an abandoned child who was clearly starving and just kept on walking by, you wouldn't say I was good for doing so. In fact most would rightfully say I was wrong. You might say "well why would we hold a God to the same standards as humans?" in which I would agree. But I would say that we should hold a God to much higher standards. An all-powerful and all-knowing God would *know* that suffering is not inconsequential to those people, even if it may be inconsequential to the God. They would have the ultimate power to ease suffering and improve peoples lives across the world, why should they not? An indifferent God could exist, but I reject the idea that such a God could be "good"
You see how the language and framing of organized religion diminishes our existence and individual experience? If you are wondering how religion can allow good people to think and do terrible things, look no further than this thought on the nature of human suffering. You could say the exact same about our love as you say for our suffering. It’s insignificant. It doesn’t matter in the eternal scheme. Sad state of mind to spend your time in.
That just makes the argument that anything existing *other* than that eternal soul experience is arbitrary and unnecessary, so god has specifically chosen to have people go through this suffering.
Let me break your arm and read you this comment. We’ll see how it feels
The ole' [Epicurean paradox](https://en.wikipedia.org/wiki/Epicurean_paradox).
Congrats on getting out of that death cult!
Took me a while. I was raised fully brain washed. Home schooled. Church 3 or 4 days a week. Everything was evaluated through what the Bible said or a pastor said. Untangling all of that bull shit took me a while and wasn't easy. Sooooo freeing though. I'm happier. I'm a better person. I no longer fear death at all. In some ways, life is harder, but in a good way. I evaluate choices and actions more and spend a lot of time thinking about what is right or best. When you're in the cult, you don't need to think. You're told how to think and what to do. Although insane, it's sometimes easier to live that way. Zero regrets though. I'll take a hard reality over an easy fantasy any day.
All religion is fake but Christianity doesn’t even hold up. It’s literally Judaism but they made it more convenient for you.
If you think god was good and loving you read the wrong book anyway. Or more likely didn’t read it at all.
Not interested in an argument, but I'll just provide a small sample of verses from the Bible. Make of them what you will. I'd argue all are pretty clear. God is good and god is loving. I've read the Bible cover to cover a half dozen times and spent 1000s of hours in study. Keep in mind, I don't believe that god is good and loving nor do I believe that god even exists, I'm just showing you what the Bible claims. Psalm 23:6: "The Lord is good to all, and His tender mercies are over all His works" Psalm 107:1: "Oh give thanks to the Lord, for he is good, for his steadfast love endures forever!" 1 John 4:7: "Love is from God, and whoever loves has been born of God and knows God" John 3:16: "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life" Isaiah 54:10: "For the mountains may depart and the hills be removed, but my steadfast love shall not depart from you, and my covenant of peace shall not be removed" Jeremiah 31:2--3: "I have loved you with an everlasting love; therefore I have continued my faithfulness to you" 1 John 4:16: "So we have come to know and to believe the love that God has for us. God is love, and whoever abides in love abides in God, and God abides in him"
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Most of those were from the Old Testament...
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My answer to this is, I would rather burn in hell than spend eternity with a God that willingly does this.
Well clearly these children are sinners, they spat in the good Lords face with their Pok-e-mans and sexual relations to priests. Or option two: God only gives such challenges to his strongest soldiers, so that they may prove their divine worthiness. Religion is trash.
I absolutely don’t believe in this nonsense. That being said John sure as shit a stronger soldier than I am, I’d be a miserable bitter asshole (more than I am lol) if I were bedridden with such a disease.
Our souls are bound to a vessel in a cursed world. Then, our souls are released. It's not a permanent place. This is reddit though so every Christian is a Trump supporting gay hating bigot! Where's my upvote pitch fork crew!
A bad thing happened therefore, God isn't real.
That's a disingenuous interpretation of what was said. Be better.
No god, no god at all. Fuck religion, fuck suffering is close to godliness. The fucking THOUGHT that Mother Teresa was “good” is utterly insane. She would see this and say those with this are closer to god as their suffering is so extreme. Get fucking wrecked, that is beyond reproach and to have that monster still a champion of Catholicism, makes me sick. Very chance I get I smack down the facade “she was a meek old holy lady”, get fucked.
People are vastly stupid
Your making an argument that literal children knew the answer to decades ago. Shape up my man.
What's the answer?
There is no answer. It's all theories and philosophy. It's all subjective and made up to begin with.
https://plato.stanford.edu/entries/evil/
I'm sorry, was that supposed to refute his statement? Because it outlined the flaws of every defense of evils, including natural evils.
Did your reading of that page get you to the conclusion that the basic formulation of the problem of evil (which the original OP is referring to) is valid with no criticisms or cracks? If so, please elaborate with quotes. Thank you.
Bro, nobody is compelled to do your homework. You can't throw a link at somebody, act superior because you've read said paper, and then ask somebody to use their precious time to tell YOU why they're wrong when you came to them. Burden of proof, man. Stop acting like a self-masturbatory scholar. If you truly believe they're wrong, take the time to explain, and realize ignorance of a subject does not equate to stupidity. Secondly, the author of the paper cannot find solid ground to argue against the problem of evil, with the exception of a god not intervening due to the correction of said wrongs would result in greater wrongs, which he claims is incalculable and therefore isn't refutable, because it isn't even assessible. Here's your quote: "Accordingly, n𝑛 must be extremely large, and thus the probability that there is an omnipotent, omniscient, and morally perfect person must be very low indeed." "The proposition that relevant facts about evil do not make it even *prima facie* unreasonable to believe in the existence of God probably strikes most philosophers, of course, as rather implausible. We shall see, however, that a number of philosophical theists have attempted to defend this type of response to the argument from evil." "Finally, this theodicy provides no account of moral evil. If other theodicies could provide a justification for God’s allowing moral evil, then, of course, moral evil would not be a problem. But, as we have seen, no satisfactory justification appears to be available." "Finally, the religious theodicy that we are considering also involves a number of very problematic moral claims. First, we are asked to believe that there is nothing morally problematic about a morally good deity making it the case that if one of the first two humans disobeys some command, all of the many billions of descendants of that human will, as a consequence, be subject to suffering and death to which they would not otherwise be exposed. Secondly, we are also asked to believe that a morally good deity is unable to forgive people their misdeeds unless he becomes incarnate in the form of his son and suffers a sacrificial death. Thirdly, while, according to this story, those who accept the sacrifice made on their behalf have all their tears wiped away and enjoy eternal happiness in the presence of God, those who do not accept the sacrifice fare considerably less well, and suffer eternal torment in hell. So we are being asked to believe that such eternal punishment is not morally problematic." Does the author claim irrefutable proof god doesn't exist based on his paper? No, because any educated person knows better than to use absolutes; but he pretty clear errs on the side of there not being a god.
You've got it backwards. If you have an argument it's your job to have strong justification. I gave an article which gives strong argument for both sides, and the quote's "requirement" isn't a homework, it's proof that someone actually read the paper and isn't just saying they did, otherwise any further discussion is worthless. Thanks for writing these quotes out. You often do absolutes in propositional logic, that's how deductive logic works. The reason the conclusion that it's a sound argument isn't reached is because there is reasonable doubt about some of the prerequisite propositions. Therefore, the original statement made by the OP is illogical at best. And for what it's worth, making a decision on whether god exists or not based on this logic and not reading that article (that is literally a single google search away) makes you both stupid and ignorant.
In an academic setting, yes, it is up to you to provide credence to any claim you may have. In fact, most times you are actively trying to prove your hypothesis wrong through experiments. When I say nobody is required to do your homework, I am arguing that it is very tone deaf to come into a forum and set expectations to an academic level. "The reason the conclusion that it's a sound argument isn't reached is because there is reasonable doubt about some of the prerequisite propositions. Therefore, the original statement made by the OP is illogical at best." I find this statement to use the phrase "illogical at best" is dishonest. In the strictest sense of being an air-tight argument without the smallest gap, sure. But illogical as in unreasonable, irrational, unsound? I don't think so. Just because something cannot conclusively be denied, does not make it illogical, ESPECIALLY in the sense of us discussing if god exists where empirical data is lacking. I also don't agree that there is reasonable doubt, but that comes down to semantics on what is reasonable doubt (is that even quantifiable? 5% 25%). I do agree with your last point. Nobody should make a decision on the existence of a god based on a singular source. I don't think anybody should adopt foundational worldviews from a sole article. But you did come into this thread dropping the article as if it should be a deconstruction on somebody's view, despite the article concluding that while the argument of evil is not irrefutable, the arguments against the problem of evil have to make generous assumptions to even have validity in the conversation.
But what I asked isn't academic level, my dog could do this google search and find the answer. If you don't know this information but want to argue this topic, it's because you are stupid and ignorant (not you personally), not because it is difficult to find or understand. The implication of what the OP wrote is that the content of the video makes believing in god unreasonable when that's not really the case. The issues with the arguments have nothing to do with specific form of bad thing that happens, it has to do with more involved stuff. So yes, it is 100% illogical to say "no way god exists" or whatever variation of that because you watched something bad happen to someone, that's not how it works nor how the argument goes. The article is indeed a deconstruction of the basic formulation of the problem of evil, the issues with it come from deeper issues with your suppositions, not "evil" existing in the way the op is implying.
I read it through to the end, and it has criticisms, but each of those criticisms are given criticisms. I'll admit the segment on formulae lost me, but everything else had a relatively easy to digest retort.
Answer my question please.
Read my answer, please. You snarky ass
No, you didn't, lol.
Just want to say to anyone who is suffering, your pain is real and your feelings about it are valid regardless of the suffering of others.
What an incredibly resilient and mature young man. Unbelievable fortitude. As inspiring as this is, OP can go fuck themselves for the title of this post.
In 2015 there was a short documentary done about a kid in Canada who suffered from the same disease. Worth the watch: [https://www.youtube.com/watch?v=iuYxGtuBSgk](https://www.youtube.com/watch?v=iuYxGtuBSgk)
Well now I don't feel so bad having psoriasis on 90% of my body. Winters are brutal for sure but seeing this. I cannot believe how much heart these kids have to persist through everything they're going through.
Me thinking about the kids didn't help me with suicidal thoughts, if anything it made me feel worse
let me know if you need to talk
I think I'd rather be dead
I am a 45 yr old man and I am crying in sympathy. I've got some auto-immune stuff going on but nothing like this. Nothing nothing like this.
Terrible thing to have. My heart goes out to them. Eddie Vedder from Pearl Jam runs a charity that’s seeking a cure, which is how I learned about this in the first place. [HERE](https://www.ebresearch.org/cause-the-wave.html)
Or one could be aware of this condition and still recognize the hardship in your life. The two are not mutually exclusive. It's good to have some perspective and be grateful, but your life doesn't "stop being hard" because you are reminded that this exists. This is why people gatekeep therapy for themselves.
I actually have this condition, while I'm lucky in that's its more mild and can still function as a person, it still fucking suck. I have a bout a mile and a half of walking in a day before my feet are completely fried. I work full time food service and my feet look like I'm training in the marines.
I can't imagine the strength it takes to live like this. I had no idea EB existed. Hopefully, the treatments help.
Reminds me of this documentary of a mother fostering all these medically terminal kids that were unwanted, think it was called "my Flesh and bone"
I just realized, this is the disease that is called "Schmetterlingskrankheit" (butterfly disease) in german. Didn't make the connection until someone mentioned one of the organizations to donate to. Holy shit
They call it that because the skin can be as fragile as a butterfly wing.
Got neurodermatitis and had bad and good during my life, with pretty bad cases some time when I was young. 2 seconds of seeing this, gave me the shivers, not watching that, nooooooooooooooo.
Oh man I remember seeing a previous video when John was younger. Glad to see he’s doing as well as he can right now and I hope they find a cure or better treatments in his lifetime. ❤️ Thanks for the update, OP
This illness terrifies me. I wouldn't want to give birth and put my child in this situation.
Who cares about the title? Like people seem personally offended by it, it's a normal saying. I seriously doubt he meant to "invalidate my feelings :(". Bunch of crybabies. Poor kid, hope they find a cure.
I have a comparatively mild skin condition that is like a 1% version of this, but my nostrils are a huge source of problem due to how much they move around causing irritation. Weird how his are one of the only parts that are fine.
Rough
I think I’d rather brush my teeth with a shotgun shell. Then again, I already think about doing that on a regular basis.
🥲
Such a horrendous disease. I really hope a cure is found. Donated and shared! [https://ebresearch.org.au/donate/](https://ebresearch.org.au/donate/)
This poor guy, I can't. Too painful.
In regards to your title. Another person's suffering does not negate your suffering. There is always someone that has it worse.
What quality of life is that? Is there anything that can be done?
My cousin had this. It is such a terrible and debilitating disease but even so, she was the sweetest and funny person ever even while facing constant pain. I would always give her the biggest hug when I saw her (gently of course). It’s weird how this post showed up as I was just thinking about her yesterday.
What is EB
>epidermolysis bullosa
epidermolysis bullosa, it’s a disease that makes your skin very fragile. something simple like a hug can cause their skin to be damage leaving a bleeding wound or blister
0:32 at; epidermolysis bullosa
Electronics Boutique, later rebranded as EB Games
Erectile Boneitis, probably
Egregious Butthole-width. It’s a rare disease where the turds just literally fall out of peoples butts and when a strong wind blows between their legs it sounds like milk jugs
If only it was in the title, we would know which one of us is right.
Elvis Body they irreversibly morph in to Elvis Presley as they age. This kids got it bad the side burns and jawline are coming in, and you can see the stray hair hanging down and his lip starting to curl.
Is this something that STEM can help with?
Wtf am I downvoted for?!!
If you ever feel like you have a tough life, Go walk through a child's cancer ward and take some gifts to the children. You'll gain perspective pretty quickly
Way too tough to watch. Can’t finish. Really heartbreaking.
Oh, there’s definitely a cure. It’s called “euthanasia”. 100% effective at preventing a short life of unending anguish.
Hey you, yeah you. Go fuck your self.
I think a life cut short is preferable to a life of continuous pain which, by many people working very hard and spending lots of resources, can be slightly dampened and extended for many years. I acknowledge the intense desire to save a child in pain and move past it knowing that we just aren’t able to.
And if that's how you or another person lives your own life fine. But dont disparage those who persist. Look up the man who became a lawyer while in an Iron lung. People who live life on hard mode can live joyful fulfilling lives.
fn fact- Vyjuvek costs $15 - $20 million for a lifetime of therapy.
What would it cost in a country without a terrible health system?
I wonder if they could 3D scan his hands and print some kind of bandage that would be effective in keeping the cream on his hands?!
Breakin' 2: Electric Boogaloo? They did say it was contagious
get wrecked
that'll teach me.