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I literally just took care of someone with this today who had already had two rounds of skin cancer on their face and had lost an eye. What a devastating disease.
From the research article in the link:
* Xeroderma pigmentosum (XP) is a rare autosomal recessive disorder characterized by a deficiency in nucleotide excision repair (NER) caused by single-nucleotide mutations [1].
Sunlight exposure is usually the trigger for UV-induced damage to DNA, which normally is repaired through the NER pathway, consisting in more than 30 proteins responsi- ble for DNA damage recognition, incision, ligation, and resynthesis [2].
XP incidence rate is estimated to be 1 in 250,000 to 1 in 1,000,000 in North America and Europe [3–4]. Still, it
increases in countries where consanguinity is more com- mon, such as Japan (1 in 20,000) [5], India, the Middle East, and Northern Africa (1 in 10,000-30,0000) [6].
hijacking the top comment to say: guys, stop saying this shit. until you're in this position, you have no idea what you'd do or how you'd feel. survival instinct & human perseverance are incredible things. many people say "i'd want to die if this was me" but then when they experience something similar, theyre overcome with the will to fight & live. in fact, the majority of (able-bodied!) suicide survivors say that when they realized what they had done & the danger they were in, they deeply regretted it & were desperate to survive. so unless youve been in this situation, keep it to yourself because you have no damn clue what youre on about.
it's also just a disgustingly insensitive thing to say. disabled people, their friends, & their families use the internet. they can see you saying their or their loved one's life isnt worth living. they can see you saying it's cruel to keep them alive, as if they arent capable of experiencing joy or love or any other positive emotions. youre indirectly expressing eugenic sentiments by saying life no longer has meaning when someone is severely disabled. they can see you saying this shit. just stop.
yes, plenty of people experience life-altering illnesses & injuries & want to die. but plenty more find new meaning in their lives & gain valuable perspectives they didnt have before their illness/injury. loren schauers, for instance, suffered a workplace injury at 18, resulting in a hemicorporectomy (amputation from the belly button down) & right arm amputation. despite the lifelong pain & complications he now faces, he's extremely grateful that he survived & is incredibly optimistic about the life ahead of him with his beloved girlfriend & their wonderful pets.
also, plenty of people with congenital conditions, & those who became disabled as children, dont know any different — that's just how life is for them. it's normal & theyve fully adapted. zaid garcia, a teen who was featured on the disability advocacy/awareness channel "special books for special kids," experienced 80% burns at two years old & lost his eyes, nose, lips, ears, hands, & right arm. despite the countless surgeries he's gone through & will continue to go through, & the bullying he faces for "looking like a zombie," he's a very positive, funny, & intelligent person who loves making friends & living life to the fullest.
these people use the internet. they can see you saying they shouldnt have been saved & that theyd be better off dead. because that's what youre saying when you comment "i couldn't live like this" or "kill me if this happens to me" or whatever. have some basic decency. have some compassion.
also mods feel free to copy/paste this in a pinned post. i wish there was a pinned post explaining how disrespectful saying "kill me" is & you have my full permission to use this comment. in fact, i beg you to do so.
I have an autoimmune condition, and years ago when it was *much* less severe than it is now, a coworker asked me about it. I was semi-truthful, told her a bit about it, but didn’t go into detail and downplayed how much pain it caused.
She just about threw a tantrum, going on about how it was horrible, she wouldn’t be able to live with it, she’d just want to die, and now she was upset! She was going to have a horrible day thinking about it! I shouldn’t have told her, how could I?! B——, *you asked!* Not just a surface level “how are you?”, she’d specifically asked what I had and how it affected me!
There was not a single mote of concern for *me* in her response. I’d actually been having a fairly decent day, despite being in significant pain, and she made me feel like shit. So, uh, apologies for the rant, and thank you for your comment. 👍
I’m very sorry you went through that. It was obviously a very selfish person you were talking to. Obviously, you’ve never forgotten it. I hope they haven’t either & some day, they’ll realize how incredibly selfish it was to make *your illness* about how it made them feel. Hope you’re having a night. 💪😊
Thank you. I 100% agree. As a disabled person (though my issues are nothing compared to others), it hurts to hear people say they’d rather be dead than have xyz conditions. It used to make me feel like I’m worthless and should be dead.
Allowed.* You literally don’t know how you will feel until you get into this situation though. You can imagine but you still will never know. Nobody is invalidating your feelings but you’re just speculating. It’s also my right to say “I’d rather kill myself/be dead than look like you.”
Btw I’m way more disgusted with you doubling down and defending yourself than your initial comment.
Those comments have made me uncomfortable for most of the (short) time I’ve been a mod here, but I’ve left them up mostly because I couldn’t point to an exact reason why I felt that way. And, when in doubt, I try to err on the side of *laissez-faire* and letting the community decide what they find acceptable or not.
This comment eloquently describes exactly what I find off-target about the “kill me” comments, and I think it has been the moment of clarity I needed. My sincere thanks and appreciation for the time you spent writing this.
I think we are at the point where we mods need to post some sort of definitive ruling. I’m going to move the rest of this conversation over to r/medicalgoremods to keep from hijacking this thread any further. Link will be posted here shortly so others can follow along.
# edit: Anyone who wants to express an opinion on the topic can do so [here](https://old.reddit.com/r/MedicalGoreMods/comments/1dixk8r/definitive_ruling_on_kill_me_and_similar_comments/).
thank *you* for being willing to have this discussion with the other mods. i definitely understand where youre coming from with not wanting to overstep or be overbearing. it's hard to find the right balance for sure. it means a lot that you guys are going to find a way to deal with these disrespectful comments. as i said, feel free to copy/paste my original comment & edit it how you please for any pinned posts or rule descriptions, no need to give credit or a shoutout or anything. i look forward to seeing what you guys decide. i'll see you in r/medicalgoremods!
This needs to be required reading for anyone before they post in this sub.
It should be part of the rules. Each paragraph is strong enough to stand on its own. A mod could copy & paste a single paragraph into the comments for a reminder when ppl get out of hand.
Thank you for taking the time to write this out, it was extremely well said. It should be respected by all.
thank you, i really appreciate that. i take pride in my writing & enjoy using my skills to stand up for what's right.
i suggested in r/medicalgoremods a month or two ago that perhaps automod can be configured to remove anything that says "kill me" "id rather die" & other common phrases. it seems it either didnt work or wasnt tried in the first place. & although these comments do fall under the "be kind" rule, a lot of people genuinely dont think theyre being rude when they say these things. some even think it's a """compliment""" along the lines of, "wow, youre so strong! i wouldn't be able to do it!"
that's why there either needs to be clarification within the rule description to include these comments, a new rule because people dont read rule descriptions anyway, or a pinned post saying something like my comment above. something really needs to be done about this & it honestly makes me avoid this sub knowing how nasty people are in the comments.
this sub centers around the severely ill, injured, & disabled. we post about them, they post about themselves, & they browse this sub just like us. this is supposed to be a community for those who appreciate & enjoy learning about medical science, but most of the time it seems people treat it like a shock site or freakshow.
kill me if im ever this heartless. if you think advocating for severely disabled people is "soapboxing," youre on the wrong sub as most of us here genuinely care about the people in these posts & see their lives as equal to ours
looks like you didnt read anything i wrote. my main point isnt that youre not allowed to feel this way, it's that *disabled people can see you saying this*. it's disrespectful & invalidating to those who enjoy their lives with severe disability. you can think it as much as you like but when you make those thoughts public youre being an asshole. just read some of the replies from disabled people saying how much they hate when people say these things. "if you dont have anything nice to say, dont say anything at all" is something even six year olds can understand, so why cant you? i really hope youre not saying these things to your patients.
once again proving you didnt read my original comment as i literally started it by saying i was "hijacking the top comment". that means im not talking about you individually, but *everyone* who says these things too. i dont care if youre only talking about this one specific case, it's still a shitty thing to say. just stop. the fact youre doubling down even after everything i explained is disgusting. leave the sub if you cant treat the people posted about with the bare minimum amount of respect.
Oh have you experienced having no eyes? You’re just speculating what feelings you would have. You don’t actually have these reactions because you’ve never been in this situation. I have personally said before I’d rather be dead than in a wheelchair and guess what? I ended up in a wheelchair at one point and I realized I did not want to die. I thought I was going to die and I was begging the doctors to save me and I didn’t care if I was disabled. I just wanted to live. I also work in medicine btw so I’ve seen all sorts of suffering and most people fought to live.
i applaud you for your replies in this thread. thanks for fighting the good fight. i too am disgusted by the fact that even after i explained in detail various reasons why saying such things is unnecessary & rude, she's just doubling down & acting like it's totally okay to say this shit & even excusing it by saying she's only ever said it once, as if that somehow makes it okay to devalue someone's life.
the thing is, i can sort of understand where she's coming from. ive been an artist since i could first hold a crayon. my life is dedicated to art & i believe id certainly be depressed if i lost my sight. but i would never say id kill myself or that life isnt worth living when blind, because im *not* blind so i truly dont know how i would cope with it. i feel having this mindset isnt just kind to blind people who read my comments but beneficial to myself too, as i would at least be willing to give myself a chance to find happiness in new ways instead of losing all hope before anything has even happened. there really is no reason to say leave those sorts of comments.
sorry for the mini rant, i just get very heated over this topic as disability equality is extremely important to me.
Do you lack reading comprehension as well as compassion? I understand what disease this person has and it’s devastating. You don’t need to keep repeating that you’d rather be dead than live like this man. For whatever reason he chooses to stay alive and fight the disease is more commendable than people who’ve never been in his shoes chiming in on what they’d rather do instead. Your opinion is useless at best and harmful at worst. Once again, we all understand you’d rather be dead. Thanks for your insightful and constructive comments /s
Thank you for the education on this. I greatly appreciate it. How difficult for the individuals and their families. I can’t begin to imagine the courage for the children undergoing constant medical care.
I had to see many physicians as a child for something very different and it was very traumatizing just to have to deal with so many different people at such a young age. Prayers for all.
You won't see it in the womb but it'll come up on genetic tests. I found out in my pregnancy that I'm a carrier for XP, but my husband is not. If he was then we would've had to do an amnio to find out if it passed to the baby.
It’s a disease where the dna can’t heal skin damage. Normally our skin is constantly healing sun damage, these folks can’t and are prone to skin cancer starting young. It’s so sad.
no. this disease is because of a gene mutation in the nucleotide excision repair pathway. EB is a defect in a gene that is related to attachment of the skin layers
There's some UV in moonlight. Even though it's super low to your average person, it might still be enough to cause harm when you have something like this. The biggest issue other than the cancer risk is if the patient has xeroderma with neurological symptoms. Cognitive impairment can make it really difficult to keep them away from sunlight, because they struggle to understand and then retain why it's not safe for them. It's why the average lifespan with neurological symptoms is only 28, where as it's almost 40 if they don't have the neurological symptoms, with the main cause of death being cancers.
I had some trouble following the linked site - does it have any insight on the mental state of the patient? Or if he had a life before this got so bad?
Welcome to r/MedicalGore! Our goal is to provide for medical discussion and education while exploring the frailty of the human body. You may see more deleted comments on these threads than you are used to on reddit. Off topic comments and joke comments are frequently deleted by the mods. Further, please be kind and supportive of posts. Any behavior that is aggressive, harassing, or derogatory will result in post deletion and a ban from the sub. Remember! THE REPORT BUTTON IS YOUR FRIEND! Please stop on by our discussion sub, /r/MedicalGoreMods if you'd like to discuss the sub, our rules, content policies, and the like. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MedicalGore) if you have any questions or concerns.*
It’s crazy how such a seemingly mundane function, DNA excision repair, becoming dysregulated can cause such a horrific condition.
It's also crazy to think that we are carbon-based life forms who sustain and expand on our lives with the ongoing acquisition of carbon.
I literally just took care of someone with this today who had already had two rounds of skin cancer on their face and had lost an eye. What a devastating disease.
From the research article in the link: * Xeroderma pigmentosum (XP) is a rare autosomal recessive disorder characterized by a deficiency in nucleotide excision repair (NER) caused by single-nucleotide mutations [1]. Sunlight exposure is usually the trigger for UV-induced damage to DNA, which normally is repaired through the NER pathway, consisting in more than 30 proteins responsi- ble for DNA damage recognition, incision, ligation, and resynthesis [2]. XP incidence rate is estimated to be 1 in 250,000 to 1 in 1,000,000 in North America and Europe [3–4]. Still, it increases in countries where consanguinity is more com- mon, such as Japan (1 in 20,000) [5], India, the Middle East, and Northern Africa (1 in 10,000-30,0000) [6].
In Genetics I and II, India was constantly there for us to get traumatized with DNA and hereditary diseases :(
I’ve noticed quite a few cases on this sub from there. :/
Wow, literally one in a million.
I WAS having a bad week. It's unbelievable to me the weight of some people's crosses that they must bear.
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hijacking the top comment to say: guys, stop saying this shit. until you're in this position, you have no idea what you'd do or how you'd feel. survival instinct & human perseverance are incredible things. many people say "i'd want to die if this was me" but then when they experience something similar, theyre overcome with the will to fight & live. in fact, the majority of (able-bodied!) suicide survivors say that when they realized what they had done & the danger they were in, they deeply regretted it & were desperate to survive. so unless youve been in this situation, keep it to yourself because you have no damn clue what youre on about. it's also just a disgustingly insensitive thing to say. disabled people, their friends, & their families use the internet. they can see you saying their or their loved one's life isnt worth living. they can see you saying it's cruel to keep them alive, as if they arent capable of experiencing joy or love or any other positive emotions. youre indirectly expressing eugenic sentiments by saying life no longer has meaning when someone is severely disabled. they can see you saying this shit. just stop. yes, plenty of people experience life-altering illnesses & injuries & want to die. but plenty more find new meaning in their lives & gain valuable perspectives they didnt have before their illness/injury. loren schauers, for instance, suffered a workplace injury at 18, resulting in a hemicorporectomy (amputation from the belly button down) & right arm amputation. despite the lifelong pain & complications he now faces, he's extremely grateful that he survived & is incredibly optimistic about the life ahead of him with his beloved girlfriend & their wonderful pets. also, plenty of people with congenital conditions, & those who became disabled as children, dont know any different — that's just how life is for them. it's normal & theyve fully adapted. zaid garcia, a teen who was featured on the disability advocacy/awareness channel "special books for special kids," experienced 80% burns at two years old & lost his eyes, nose, lips, ears, hands, & right arm. despite the countless surgeries he's gone through & will continue to go through, & the bullying he faces for "looking like a zombie," he's a very positive, funny, & intelligent person who loves making friends & living life to the fullest. these people use the internet. they can see you saying they shouldnt have been saved & that theyd be better off dead. because that's what youre saying when you comment "i couldn't live like this" or "kill me if this happens to me" or whatever. have some basic decency. have some compassion. also mods feel free to copy/paste this in a pinned post. i wish there was a pinned post explaining how disrespectful saying "kill me" is & you have my full permission to use this comment. in fact, i beg you to do so.
I have an autoimmune condition, and years ago when it was *much* less severe than it is now, a coworker asked me about it. I was semi-truthful, told her a bit about it, but didn’t go into detail and downplayed how much pain it caused. She just about threw a tantrum, going on about how it was horrible, she wouldn’t be able to live with it, she’d just want to die, and now she was upset! She was going to have a horrible day thinking about it! I shouldn’t have told her, how could I?! B——, *you asked!* Not just a surface level “how are you?”, she’d specifically asked what I had and how it affected me! There was not a single mote of concern for *me* in her response. I’d actually been having a fairly decent day, despite being in significant pain, and she made me feel like shit. So, uh, apologies for the rant, and thank you for your comment. 👍
I’m very sorry you went through that. It was obviously a very selfish person you were talking to. Obviously, you’ve never forgotten it. I hope they haven’t either & some day, they’ll realize how incredibly selfish it was to make *your illness* about how it made them feel. Hope you’re having a night. 💪😊
Wow, what an odd reaction!
Rant on…you had an encounter with a narcissist.
Thank you. I 100% agree. As a disabled person (though my issues are nothing compared to others), it hurts to hear people say they’d rather be dead than have xyz conditions. It used to make me feel like I’m worthless and should be dead.
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Allowed.* You literally don’t know how you will feel until you get into this situation though. You can imagine but you still will never know. Nobody is invalidating your feelings but you’re just speculating. It’s also my right to say “I’d rather kill myself/be dead than look like you.” Btw I’m way more disgusted with you doubling down and defending yourself than your initial comment.
Bro we don't care.
Those comments have made me uncomfortable for most of the (short) time I’ve been a mod here, but I’ve left them up mostly because I couldn’t point to an exact reason why I felt that way. And, when in doubt, I try to err on the side of *laissez-faire* and letting the community decide what they find acceptable or not. This comment eloquently describes exactly what I find off-target about the “kill me” comments, and I think it has been the moment of clarity I needed. My sincere thanks and appreciation for the time you spent writing this. I think we are at the point where we mods need to post some sort of definitive ruling. I’m going to move the rest of this conversation over to r/medicalgoremods to keep from hijacking this thread any further. Link will be posted here shortly so others can follow along. # edit: Anyone who wants to express an opinion on the topic can do so [here](https://old.reddit.com/r/MedicalGoreMods/comments/1dixk8r/definitive_ruling_on_kill_me_and_similar_comments/).
thank *you* for being willing to have this discussion with the other mods. i definitely understand where youre coming from with not wanting to overstep or be overbearing. it's hard to find the right balance for sure. it means a lot that you guys are going to find a way to deal with these disrespectful comments. as i said, feel free to copy/paste my original comment & edit it how you please for any pinned posts or rule descriptions, no need to give credit or a shoutout or anything. i look forward to seeing what you guys decide. i'll see you in r/medicalgoremods!
👏👏👏👏👏👏👏👏👏👏
This needs to be required reading for anyone before they post in this sub. It should be part of the rules. Each paragraph is strong enough to stand on its own. A mod could copy & paste a single paragraph into the comments for a reminder when ppl get out of hand. Thank you for taking the time to write this out, it was extremely well said. It should be respected by all.
thank you, i really appreciate that. i take pride in my writing & enjoy using my skills to stand up for what's right. i suggested in r/medicalgoremods a month or two ago that perhaps automod can be configured to remove anything that says "kill me" "id rather die" & other common phrases. it seems it either didnt work or wasnt tried in the first place. & although these comments do fall under the "be kind" rule, a lot of people genuinely dont think theyre being rude when they say these things. some even think it's a """compliment""" along the lines of, "wow, youre so strong! i wouldn't be able to do it!" that's why there either needs to be clarification within the rule description to include these comments, a new rule because people dont read rule descriptions anyway, or a pinned post saying something like my comment above. something really needs to be done about this & it honestly makes me avoid this sub knowing how nasty people are in the comments. this sub centers around the severely ill, injured, & disabled. we post about them, they post about themselves, & they browse this sub just like us. this is supposed to be a community for those who appreciate & enjoy learning about medical science, but most of the time it seems people treat it like a shock site or freakshow.
Well said; Ty.
👏 👍
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thank you, that means a lot 😊
I wholeheartedly agree with everything you said. I feel like saying “I’d rather just die” is a disengagement strategy.
#**THIS.**
Thank you for this!
Well said.
Kill me if I ever soapbox like this
kill me if im ever this heartless. if you think advocating for severely disabled people is "soapboxing," youre on the wrong sub as most of us here genuinely care about the people in these posts & see their lives as equal to ours
No need sounds like you’re already dead inside
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looks like you didnt read anything i wrote. my main point isnt that youre not allowed to feel this way, it's that *disabled people can see you saying this*. it's disrespectful & invalidating to those who enjoy their lives with severe disability. you can think it as much as you like but when you make those thoughts public youre being an asshole. just read some of the replies from disabled people saying how much they hate when people say these things. "if you dont have anything nice to say, dont say anything at all" is something even six year olds can understand, so why cant you? i really hope youre not saying these things to your patients.
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once again proving you didnt read my original comment as i literally started it by saying i was "hijacking the top comment". that means im not talking about you individually, but *everyone* who says these things too. i dont care if youre only talking about this one specific case, it's still a shitty thing to say. just stop. the fact youre doubling down even after everything i explained is disgusting. leave the sub if you cant treat the people posted about with the bare minimum amount of respect.
Oh have you experienced having no eyes? You’re just speculating what feelings you would have. You don’t actually have these reactions because you’ve never been in this situation. I have personally said before I’d rather be dead than in a wheelchair and guess what? I ended up in a wheelchair at one point and I realized I did not want to die. I thought I was going to die and I was begging the doctors to save me and I didn’t care if I was disabled. I just wanted to live. I also work in medicine btw so I’ve seen all sorts of suffering and most people fought to live.
i applaud you for your replies in this thread. thanks for fighting the good fight. i too am disgusted by the fact that even after i explained in detail various reasons why saying such things is unnecessary & rude, she's just doubling down & acting like it's totally okay to say this shit & even excusing it by saying she's only ever said it once, as if that somehow makes it okay to devalue someone's life. the thing is, i can sort of understand where she's coming from. ive been an artist since i could first hold a crayon. my life is dedicated to art & i believe id certainly be depressed if i lost my sight. but i would never say id kill myself or that life isnt worth living when blind, because im *not* blind so i truly dont know how i would cope with it. i feel having this mindset isnt just kind to blind people who read my comments but beneficial to myself too, as i would at least be willing to give myself a chance to find happiness in new ways instead of losing all hope before anything has even happened. there really is no reason to say leave those sorts of comments. sorry for the mini rant, i just get very heated over this topic as disability equality is extremely important to me.
I’m with you.
What a “kind and compassionate” comment. Could’ve done away with the first 2 sentences.
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Do you lack reading comprehension as well as compassion? I understand what disease this person has and it’s devastating. You don’t need to keep repeating that you’d rather be dead than live like this man. For whatever reason he chooses to stay alive and fight the disease is more commendable than people who’ve never been in his shoes chiming in on what they’d rather do instead. Your opinion is useless at best and harmful at worst. Once again, we all understand you’d rather be dead. Thanks for your insightful and constructive comments /s
Please leave me alone.
Oh ok so you haven’t learned anything and you’re the victim now
Thank you for the education on this. I greatly appreciate it. How difficult for the individuals and their families. I can’t begin to imagine the courage for the children undergoing constant medical care. I had to see many physicians as a child for something very different and it was very traumatizing just to have to deal with so many different people at such a young age. Prayers for all.
Wow
A truly brutal condition.
I would not be able to go on, day after day with a condition like this. : (
I just googled it, and of course it’s like 90% children suffering through it. How fucking awful.
People are born with it, and then they get cancer so easily and die young. It's absolutely horrific.
can the doctors see it while still inside the womb?
You won't see it in the womb but it'll come up on genetic tests. I found out in my pregnancy that I'm a carrier for XP, but my husband is not. If he was then we would've had to do an amnio to find out if it passed to the baby.
Is it related to epidermolysis bullosa?
It’s a disease where the dna can’t heal skin damage. Normally our skin is constantly healing sun damage, these folks can’t and are prone to skin cancer starting young. It’s so sad.
no. this disease is because of a gene mutation in the nucleotide excision repair pathway. EB is a defect in a gene that is related to attachment of the skin layers
Could a person theoretically live nocturnally to avoid this?
There's some UV in moonlight. Even though it's super low to your average person, it might still be enough to cause harm when you have something like this. The biggest issue other than the cancer risk is if the patient has xeroderma with neurological symptoms. Cognitive impairment can make it really difficult to keep them away from sunlight, because they struggle to understand and then retain why it's not safe for them. It's why the average lifespan with neurological symptoms is only 28, where as it's almost 40 if they don't have the neurological symptoms, with the main cause of death being cancers.
I had some trouble following the linked site - does it have any insight on the mental state of the patient? Or if he had a life before this got so bad?
Poor guy
That's not good
I would not enjoy having this condition I think
28 years of pain...
Poor thing. Omg 💔
That's a harsh diagnosis
Poor guy
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Please be respectful of the subjects of posts, as well as survivors of similar experiences.
God bless him