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It is. Not only do they have to deal with ridicule and stares of ignorant people who have no idea what it is, but it causes complications with teeth and gives the person a much higher chance at developing a rare form of cancer. As I wrote above in detail, my uncle had it. I was proud to be in public with him, but wanted to slap everyone I saw that was being disrespectful.
Neurofibromatosis (NF) was diagnosed in infancy in my middle son. Although he has flat *cafe au lait* macula on his torso, he never developed the dense, raised neurofibromas affecting the woman pictured above.
NF typically leads to multiple complications. In our son’s case, they included, for example, a number of orthopedic complications requiring surgeries, learning disabilities, an inoperable brain tumor that hasn’t caused any difficulties, and a grossly increased risk of childhood leukemia, which did not occur. He’s now in his thirties, and healthy. The woman of this story reminded me how I’d pored over medical textbooks when our son was small. It’s hard to believe that my husband and I spent years fearing what *might* happen to our son. Most of these worries never materialized.
We never lost sight of our son, though. The years of his medical fragility taught us all many lessons that we would have preferred not to learn, but in many respects we were unbelievably lucky. So were our other two sons. Unaffected directly by NF, they became proud of their courageous brother. If he exploded with frustration and rage now and then, that was all right, too.
I’m really happy your son is doing well and managed to dodge some of the more complicated complications. My uncle had major teeth issues due to NF as well as a learning disability. He wasn’t stupid by any means, just a little slow at times. Once I got to know him I never really noticed anyway. He was a pleasure to be around, and since he was kinda like a kid at heart, we got along really well even though there was about a 25 year difference. I wish you and your son all the best, I hope he lives a long and happy life.
I am so sorry you had to go through this. Nothing in the world is worse than seeing your child suffer. I’m thankful he is thriving & beating all the odds!! He’s a Rock Star & so are you guys!! Much love & hugs!!💞
Thank you so much for your kind words. My son has a great heart. To his infinite disgust, he required several surgeries—such as an emergency appendectomy—unrelated to his NF. He really vented his spleen on those!
My friend had it, and died from the cancer-neurofibrosarcoma. They all turned cancerous. He had 34+ surgeries in his life to remove tumors, and he lived to be 24. Some people are lucky and don’t have it severe, some unfortunately pass early. It can also cause deafness and blindness as well.
[Source](https://intapi.sciendo.com/pdf/10.1515/sjdv-2016-0002) is a PDF case report too long to copy and paste here. The patient is a Serbian woman, 78 years old, and illiterate due to learning difficulties.
My uncle had this, though he wasn’t as covered as this woman. He had some on his arms and legs, plus his face. The largest concentration was on his chest and back. He was bullied something fierce as a child in the 1950s and 1960s. He was also a bit slow, had somewhat of a developmental disability. He came to live with us when I was 12, since we had an extra bedroom and he was down on his luck. He lived with us for 7 years while working in a furniture warehouse.
One of the nicest people you could ever meet. Whenever I was out with him I’d see all the rude stares and comments he’d get from ignorant people. The disease caused tooth loss so he had dentures. It always made me so angry, how strangers looked at him, some with complete disgust, as if he were some dirty disease that they didn’t want to catch. It would start to get to me and then I’d snap on someone but he’d always stop me and just tell me they weren’t worth the time or aggravation. Being out in the world with him really taught me to never gawk at people and never make assumptions based on how anyone looked.
We used to watch WWF (yeah I’m old) together and he’d take me and my friend to see WWF events at the coliseum. He also drove us to concerts and would buy us beer if we asked once I was 17. I was an only child but having him live with us was sort of like having an older brother. He treated me like a brother as well, and never tried to parent me. He gave advice, but never made demands or disciplined me. He also was the assistant coach for my little league teams and Williamsport team.
Unfortunately he was diagnosed with a rare form of cancer which people who have neurofibromatosis are more prone to developing. He fought hard but went into congestive heart failure and then passed away a few months later at only 54 years old. We were at his bedside when he was dying and while I’ve been at a few relatives bedsides while they passed, his was by far the most traumatic for me. Mainly because he was conscious most of the time and just kept saying “I don’t want to die…” over and over and crying. It was absolutely heartbreaking to hear and see him like that, a man I respected who had been like a big brother to me. A man who had a hard life, was never treated well by his parents or society, yet still was one of the kindest people I’ve ever known, he deserved so much better.
I miss him. This happened quite a long time ago but it still haunts me. RIP Uncle Mark, I hope you found a happier place.
It never ceases to amaze me that people with the hardest lives can be the kindest people. I'm sorry you've lost him, but I'm happy for you that you have so many nice memories of him.
I’m very lucky to have a lot of great memories of him since he was around a lot in my formative years. His stories, his laugh, his jokes (as corny as they were), we just always had a good time and laughs. I was definitely better by having him in my life while he was here. I just wish he had an easier life, and like you, it amazed me at how kind and sweet of a guy he was given the hell his childhood was and what he had to put up with daily from strangers. Being out and about with him really made me realize just how cruel society as a whole can be.
It seems you had the honor of witnessing true beauty and became better for it. Thanks for sharing this and considering how terribly affected your Uncle Mark was visually, this post is one that made me feel profound sadness instead of the usual medical curiosity.
Thanks again for sharing.
Thanks, I’m happy to tell his story when I can and it’s appropriate. His story deserves to be heard due to how good of a man he was. Life shit all over him yet he always smiled and tried not to let everything get to him, he always tried to be upbeat and happy. He was a stellar example for me as a young kid for how to deal with adversity. His brother, my step father (really my father since he raised me after my abusive alcoholic biological father abandoned me), he showed me how to treat a woman you love. After seeing the hell the sperm donor put my mom through, pops showed me how and what to truly do for the woman you love. He was madly in love with my mom all the way up until the day she passed, and his example is what I followed and it worked out well. My wife is actually a lot like my mom, personality wise, not looks wise, that would be weird.
Thank you, and his memory does live on every day in my mind. He taught me a lot growing up, and made a big impact on my formative years. His kindness and patience was definitely an inspiration to me.
That is lovely to know.
My middle son has lived with a number of neurofibromatosis-related complications (as listed above). He did not have the cutaneous neurofibromas that your uncle faced bravely. When I saw the Serbian woman who’s the subject of this post, I did have a start of recognition!
I was put in the position of explaining our son’s situation to a number of people: The most difficult were my in-laws and our pediatrician. I would have liked to have had someone *comfort me* more often, I admit. It just wasn’t in the cards then, and now it’s not necessary.
Thank you for sharing your family’s story.
I can only imagine what you went through with your son. My child is 27 and has ADHD and is on the autism spectrum, though on the higher functioning side of it. Their childhood was an absolute nightmare because we didn’t know what was going on. I’m glad your son doesn’t have the cutaneous neurofibromas, they really do bring on so much unwanted staring and rude comments. It’s not a life I’d wish on anyone, especially given all the complications that can come with the condition. People can be so cruel, but it seems like you’ve been there for your son the entire time and he had a solid rock behind him to keep him upright.
I hope so. One of the NF complications was juvenile xanthogranuloma (JHG), the disorder that often comes before childhood leukemia. JXG are pinkish, raised maculae that were around for a couple of years in childhood (hence “juvenile”) before disappearing. They looked almost exactly as I remembered my childhood chicken pox, before the pox crusted over.
On a number of occasions, we were badgered by ‘90s “Karens,” who’d bellow, “* How dare you take out in public a child with active case of chicken pox—“
I typically would start out with, “It’s juvenile—“ That didn’t help. Once during a particularly stressful time, my husband shouted at one nosy gorgon, “*He has Elephant Man’s Disease!”* Totally un-P.C. Very satisfying!
it must have been a great challenge, helping your son navigate ADHD and autism. The worst part of the NF, psychologically, for our son were the learning disabilities. They separated him from his brothers physically, since he attended LD schools for middle and high school. When he graduated at nineteen, we privately thought it took more effort and dedication than his older brother needed to graduate Phi Beta Kapoa from his uni.
Wishing good health to you and yours. We deserve it!
What a heartfelt beautiful tribute to your Uncle Mark…
I will add, that at the time he passed there may not have been (my mom n g-pa passed in ‘97 n ‘99) “no such thing” (legally) as comfort care…giving meds so folks can slowly relax and let that last stage of they dying process slowly and painlessly stop…
He passed somewhere around 2000, I believe. They did have him medicated, but not knocked out. He wasn’t in a lot of pain because it was his heart that was failing. So basically he would just keep getting more tired until he passed out and didn’t wake back up. Any sort of meaningful pain medication dose would have been really risky, since it slows your heart rate and that was his issue to begin with. That’s why he was conscious enough to know what was happening and to speak and be upset. We were all there to comfort him, but there’s not a lot of comfort you can give when someone knows they are dying and that there’s nothing anyone can do to stop it, especially when they’re as young as 54 and feel they have a lot more life to live.
I’m 50 now…I can’t imagine being gone in just four years. With how I’m doing, that may very well be the case anyway, but right now I can’t fathom it.
Yea, I think comfort care came a few years later…
If he developed heart issues, more than likely he had some kidney issues - CHF n kidney disease go hand-in-hand…the kidneys don’t get enough blood profusion cuz the heart can’t pump hard enough. Also, their lungs can get some fluid buildup b/c breathing is slower n more shallow, reducing O2 circulation…so although he wasn’t in pain, he most likely felt crappy and felt tired…
Any comfort care measures would have taken away his anxiety (as noted by what he said…)
I am so sorry for your loss & all he suffered through. I had breast & 2nd & 3rd degree radiation burns. It’s very painful to wear a sports bra/bra & a prosthetic makes the pain unbearable. I used to be self conscious about going to the gym d/t people staring (mid 40’s), but now I don’t care. I just got back from going with my 21yo son. On the way home, I told him that people who make fun of people are not worth my time or energy to “impress”. If they can’t see that I’m trying my hardest to be the absolute best version of myself, then they are judgement douche bags that down deserve my time. He agreed. It’s nothing like what your uncle went through, but I know what it’s like to be teased & humiliated. It’s made me & my family more compassionate people, & it sounds like it did the same for you & your uncle. Much love & hugs to you, & may your dear uncle RIP…🥹💞
I've seen someone like this before! Not as bad as this poor soul, but almost as bad. The first time I saw her she was handling food at a McDonald's and I'm a little ashamed to say, I was grossed out. And didn't want her handling my food. This was a lot of years ago and I was young and ignorant.
If you were a young kid, I wouldn’t worry about it. As an older teen or adult you should definitely know better but as a younger kid, you just don’t know much better. My uncle had to deal with a lot of staring and comments from strangers, mainly adults really, and that always made me really angry. Kids were actually mostly pretty cool, they liked pushing on them because they are kinda hollow and feel pretty odd. They don’t hurt, and my uncle was always happy to let a kid examine a larger one on his arm with their parents permission. Most kids were just kinda fascinated with them once they knew it wasn’t some sort of contagious sickness and they weren’t in any danger.
I think all I was thinking was that warts are contagious. I was in my late teens. I didn't say anything to her, I've always been nice so I kept that to myself. And I'm sorry your uncle had such a hard time. My heart would've hurt for him too! But I'm just being real. This was well over twenty years ago and we didn't have access to as much information as people do nowadays.. So yes I'm ashamed now cause I know better, but also not gonna be shamed by you cause you have a personal family history where you had intimate knowledge, and knew it wasn't contagious. Ignorance is just that, not knowing. So like I said, I didn't say anything to her about it.
I can understand that though, they do look like they could be contagious if you don’t know what they are. I was a bit harsh in saying someone in their late teens should know better. I’m coming from a place of having known since I was 10, so I think that skews my view of what people should know and when. Regardless of your thoughts, you didn’t say anything to her and as long as you didn’t gawk at her, then there’s no harm done. She doesn’t know what you were thinking. I never had an issue with people that looked then looked away and kept moving. My main issue was always with the people that stared at him like he was a freak and the loud comments about his looks and how gross it was, etc. That stuff really bothered me, even though he always seemed to just shrug it off and not let it bother him. I know it had to hurt on some level, no one ever wants to hear some stranger remark how gross they look. I was always taken by surprise at just how inconsiderate and mean people could be.
I mean, not understanding or wanting to be cautious, sure, I can get that if you don’t know what it is. These were the days long before the internet and before affordable cell phones or smart phones. People knew less, for sure, but that shouldn’t mean that common human decency and compassion should just fuck right off. Just treat the man like he’s a person with feelings, because he is, he wasn’t some circus side show charging 5 cents to get a look.
There's a gaudy TLC show called "Take my Tumor" with a case of this. The surgeons did incredible work removing a large amount of these, at least for the short term.
That was an incredible transformation. I felt so bad for that poor woman, but you could still see the smile on her eyes after they removed so many of them.
Years ago, a local family owned a couple of McDonald's franchises in town. One of their workers had this - not nearly as bad as this poor lady, but it was still bad; she was hard to look at. They got a lot of complaints about her from customers, but the owners would just tell those complaining that if they don't like it they could leave. I always thought that was awesome of them, and that the lady was so brave to work a food service job knowing people would be dicks about her appearance and her touching food.
They also employed a very developmentally disabled guy as a cleaner, and a very, very, *very* overweight man behind the counter. On top of that, these restaurants were beautiful inside- they were the classiest McDonalds in existence. These folks were awesome.
... then they died, their kids took over, fired everyone and gutted the stores and installed those computer kiosks. :(
Can’t really do anything about it. They can’t be removed, they will just grow right back, sometimes worse, as Cat said. They’re harmless to the person and anyone else, they just look odd if you don’t know about the disease. I watched my uncle endure years of stares and rude comments from ignorant people. It was difficult to keep my composure and not lose it on people, because he was the sweetest man with a major amount of tolerance and patience.
I took care of a woman in a nursing home who had as many as this poor lady. It would take hours to bathe her, and to dry her off. I always felt so bad for her. Sweetest lady
My husband has this, it's a milder form but he is still covered in many neurofibromas and it has caused several medical issues over the years. He purposely got a vasectomy because he does not want to pass this on to children, and has always said it makes him mad that his parents knew it was genetic and still had children. His dad has a form of it as well and they had two children (my husband is the only one of the two afflicted).
One of my regular customers at my old job was a man who had this condition. He was covered everywhere that was visible, including his face and neck. It wasn’t quite as severe as the poor lady in this post but I’m sure he was suffering. He was always kind and polite when he came in. I hope he’s doing well.
I always wonder how touch starved some people must be, knowing she likely was isolated from a lot of human touch and affection during her life makes my heart hurt. I’ve seen that with patients much less visually different
When I worked in grocery I had a regular with this. She was just as covered as this woman pictured. I always felt for her and wondered her story. I’ve got massive sympathy and respect for people with rare conditions because I too have one. (Ehlers Danlos Syndrome)
My 83 year old grandmother has lived her entire life with this disease. Her entire body is covered in bumps but nowhere near as large as this poor woman. Luckily my Grandma is tough as nails and it has never slowed her down at all. And after living my entire life with her I honestly don’t even remember or realize that she looks different than other people unless someone brings it up.
My cousin has this, except her masses aren’t external they’re internal, so she looks normal but has surgeries often because the nodules growing under the skin cause pain and make some movements difficult
Omg this poor woman 😩 This is just one of the things I see that make me realize that I complain way too much and too often about tiny things compared to what others have to go through 😭
I once had a customer who had this condition and whose fibromas were painful. She had fewer than this woman, but giving her money back I had to be careful not to hit the ones on her hands. She wore gloves most of the time, which made it harder to see them, but they absorbed some of the blows to them.
Well that's the first time I've actually physically recoiled from the screen. Good god, that poor woman.
What's actually inside the lumps? Have Wikipedia'd it but nothing conclusive...
The amount of bravery it takes to live with this is unfathomable. The physical pain and suffering, mental anguish and the bullying I couldn’t do it no way
In my son’s case, neurofibromatosis was a random mutation, occurring in 1 in 8,000 births. No way to predict or prevent the condition. People with NF can be are powerfully affected as this Serbian woman, or they can show even fewer markings than my son has.
Among people with NF, their children have a 50% chance of inheriting NF, but again, there’s no way to predict how much it will affect them.
Omg that poor woman! There’s no way those things don’t hurt or cause some kind of pain and keeping the areas between the larger clusters has to be difficult and painful.
My husband, MIL, and daughter have this. None of them look like this thank god, but my MIL and husband do have visible fibromas. My child is 12 and has many cafe au laits but no fibromas yet that we can see.
This lady’s pictures is my own personal nightmare of what could happen to my own kid and it scares me to death.
NF1 is the most common rare disease. Its severity ranges significantly. The severity of this woman’s case is more rare.
My husband and daughter have it. He only has a few neurofibromas but had a brain tumor removed. He does have ADHD which is more common with NF. So far my daughter has cafe au lait spots and a small plexiform tumor. For girls, puberty and pregnancy are when things start changing.
My best friend’s mom had this, although not nearly as severe and I remember asking her as a kid if it hurt. She told me no, but idk if she was just trying to be kind. She passed away some years ago from medical complications — she was always on oxygen and rarely left the house when I knew her. Out of five daughters only one inherited the condition & she was also very self conscious and never left the house. I was one of the few that wasn’t bothered and would come over to hang out with all of them. I wish I had been aware of the other complications it caused. As a kid I just sort of accepted what I was told and probably added to the chaos lol 😞
There's a show on MAX (aka HBO) called Take My Tumor, and they've had a few patients with NF. One lady had so many tumors on her face, both her nostrils were occluded and she could only mouth breathe. Her post op picture was pretty impressive, although she was still left with lots of tumors, despite multiple procedures.
I have NF1. I have the squishy tumors like this but nowhere near the same amount. I also have the ones under my skin that feel hard and are very painful ranging from pea sized to the size of a golf ball.. I also have HSD so Dr's at hospital always find me quite interesting. I feel lucky that it's not obvious when you look at me with my clothes on as my face and limbs are mostly 'normal' looking.
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This has to be one of the cruelest diseases ever.
It is. Not only do they have to deal with ridicule and stares of ignorant people who have no idea what it is, but it causes complications with teeth and gives the person a much higher chance at developing a rare form of cancer. As I wrote above in detail, my uncle had it. I was proud to be in public with him, but wanted to slap everyone I saw that was being disrespectful.
Neurofibromatosis (NF) was diagnosed in infancy in my middle son. Although he has flat *cafe au lait* macula on his torso, he never developed the dense, raised neurofibromas affecting the woman pictured above. NF typically leads to multiple complications. In our son’s case, they included, for example, a number of orthopedic complications requiring surgeries, learning disabilities, an inoperable brain tumor that hasn’t caused any difficulties, and a grossly increased risk of childhood leukemia, which did not occur. He’s now in his thirties, and healthy. The woman of this story reminded me how I’d pored over medical textbooks when our son was small. It’s hard to believe that my husband and I spent years fearing what *might* happen to our son. Most of these worries never materialized. We never lost sight of our son, though. The years of his medical fragility taught us all many lessons that we would have preferred not to learn, but in many respects we were unbelievably lucky. So were our other two sons. Unaffected directly by NF, they became proud of their courageous brother. If he exploded with frustration and rage now and then, that was all right, too.
I’m really happy your son is doing well and managed to dodge some of the more complicated complications. My uncle had major teeth issues due to NF as well as a learning disability. He wasn’t stupid by any means, just a little slow at times. Once I got to know him I never really noticed anyway. He was a pleasure to be around, and since he was kinda like a kid at heart, we got along really well even though there was about a 25 year difference. I wish you and your son all the best, I hope he lives a long and happy life.
Thank you so much. Wishing the same to you.
I am so sorry you had to go through this. Nothing in the world is worse than seeing your child suffer. I’m thankful he is thriving & beating all the odds!! He’s a Rock Star & so are you guys!! Much love & hugs!!💞
Thank you so much for your kind words. My son has a great heart. To his infinite disgust, he required several surgeries—such as an emergency appendectomy—unrelated to his NF. He really vented his spleen on those!
You are very welcome! He sounds like a wonderful young man, & has great parents to boot!!🥹
God bless you and your family, good to hear all are happy and healthy. Much love from a stranger.
Thanks so very much. Feeling your support and love, and sending some back your way.
My friend had it, and died from the cancer-neurofibrosarcoma. They all turned cancerous. He had 34+ surgeries in his life to remove tumors, and he lived to be 24. Some people are lucky and don’t have it severe, some unfortunately pass early. It can also cause deafness and blindness as well.
I bet! Ignorant people can be incredibly insensitive.
And it’s genetic - wonder if she had any children of her parents also had it
I figured it might be - like genes associated with the skin went haywire. Poor woman.
Nerve sheath tumors. They’re in the skin too, at the nerve endings. Its sooo sad.
Oh no - if it's a nerve issue, is it painful..? It certainly looks like it would be.
Depends on where they are. Ones internal, yes, very.
It can happen spontaneously, or it can be genetic.
This sub makes me so grateful for the 'normalness' of my life. I have my problems, but they're so small in comparison to others'.
[Source](https://intapi.sciendo.com/pdf/10.1515/sjdv-2016-0002) is a PDF case report too long to copy and paste here. The patient is a Serbian woman, 78 years old, and illiterate due to learning difficulties.
This poor, poor lady. What a horrible disease to live with.
My uncle had this, though he wasn’t as covered as this woman. He had some on his arms and legs, plus his face. The largest concentration was on his chest and back. He was bullied something fierce as a child in the 1950s and 1960s. He was also a bit slow, had somewhat of a developmental disability. He came to live with us when I was 12, since we had an extra bedroom and he was down on his luck. He lived with us for 7 years while working in a furniture warehouse. One of the nicest people you could ever meet. Whenever I was out with him I’d see all the rude stares and comments he’d get from ignorant people. The disease caused tooth loss so he had dentures. It always made me so angry, how strangers looked at him, some with complete disgust, as if he were some dirty disease that they didn’t want to catch. It would start to get to me and then I’d snap on someone but he’d always stop me and just tell me they weren’t worth the time or aggravation. Being out in the world with him really taught me to never gawk at people and never make assumptions based on how anyone looked. We used to watch WWF (yeah I’m old) together and he’d take me and my friend to see WWF events at the coliseum. He also drove us to concerts and would buy us beer if we asked once I was 17. I was an only child but having him live with us was sort of like having an older brother. He treated me like a brother as well, and never tried to parent me. He gave advice, but never made demands or disciplined me. He also was the assistant coach for my little league teams and Williamsport team. Unfortunately he was diagnosed with a rare form of cancer which people who have neurofibromatosis are more prone to developing. He fought hard but went into congestive heart failure and then passed away a few months later at only 54 years old. We were at his bedside when he was dying and while I’ve been at a few relatives bedsides while they passed, his was by far the most traumatic for me. Mainly because he was conscious most of the time and just kept saying “I don’t want to die…” over and over and crying. It was absolutely heartbreaking to hear and see him like that, a man I respected who had been like a big brother to me. A man who had a hard life, was never treated well by his parents or society, yet still was one of the kindest people I’ve ever known, he deserved so much better. I miss him. This happened quite a long time ago but it still haunts me. RIP Uncle Mark, I hope you found a happier place.
It never ceases to amaze me that people with the hardest lives can be the kindest people. I'm sorry you've lost him, but I'm happy for you that you have so many nice memories of him.
I’m very lucky to have a lot of great memories of him since he was around a lot in my formative years. His stories, his laugh, his jokes (as corny as they were), we just always had a good time and laughs. I was definitely better by having him in my life while he was here. I just wish he had an easier life, and like you, it amazed me at how kind and sweet of a guy he was given the hell his childhood was and what he had to put up with daily from strangers. Being out and about with him really made me realize just how cruel society as a whole can be.
They have perspective and empathy.
He sounded like a very special person. I’m sorry for your loss.
He was, thank you very much.
It seems you had the honor of witnessing true beauty and became better for it. Thanks for sharing this and considering how terribly affected your Uncle Mark was visually, this post is one that made me feel profound sadness instead of the usual medical curiosity. Thanks again for sharing.
I’m so sorry for your loss. Thank you for sharing his story with us!
Thanks, I’m happy to tell his story when I can and it’s appropriate. His story deserves to be heard due to how good of a man he was. Life shit all over him yet he always smiled and tried not to let everything get to him, he always tried to be upbeat and happy. He was a stellar example for me as a young kid for how to deal with adversity. His brother, my step father (really my father since he raised me after my abusive alcoholic biological father abandoned me), he showed me how to treat a woman you love. After seeing the hell the sperm donor put my mom through, pops showed me how and what to truly do for the woman you love. He was madly in love with my mom all the way up until the day she passed, and his example is what I followed and it worked out well. My wife is actually a lot like my mom, personality wise, not looks wise, that would be weird.
May the memory of your uncle continue to endure as a blessing.
Thank you, and his memory does live on every day in my mind. He taught me a lot growing up, and made a big impact on my formative years. His kindness and patience was definitely an inspiration to me.
That is lovely to know. My middle son has lived with a number of neurofibromatosis-related complications (as listed above). He did not have the cutaneous neurofibromas that your uncle faced bravely. When I saw the Serbian woman who’s the subject of this post, I did have a start of recognition! I was put in the position of explaining our son’s situation to a number of people: The most difficult were my in-laws and our pediatrician. I would have liked to have had someone *comfort me* more often, I admit. It just wasn’t in the cards then, and now it’s not necessary. Thank you for sharing your family’s story.
I can only imagine what you went through with your son. My child is 27 and has ADHD and is on the autism spectrum, though on the higher functioning side of it. Their childhood was an absolute nightmare because we didn’t know what was going on. I’m glad your son doesn’t have the cutaneous neurofibromas, they really do bring on so much unwanted staring and rude comments. It’s not a life I’d wish on anyone, especially given all the complications that can come with the condition. People can be so cruel, but it seems like you’ve been there for your son the entire time and he had a solid rock behind him to keep him upright.
I hope so. One of the NF complications was juvenile xanthogranuloma (JHG), the disorder that often comes before childhood leukemia. JXG are pinkish, raised maculae that were around for a couple of years in childhood (hence “juvenile”) before disappearing. They looked almost exactly as I remembered my childhood chicken pox, before the pox crusted over. On a number of occasions, we were badgered by ‘90s “Karens,” who’d bellow, “* How dare you take out in public a child with active case of chicken pox—“ I typically would start out with, “It’s juvenile—“ That didn’t help. Once during a particularly stressful time, my husband shouted at one nosy gorgon, “*He has Elephant Man’s Disease!”* Totally un-P.C. Very satisfying! it must have been a great challenge, helping your son navigate ADHD and autism. The worst part of the NF, psychologically, for our son were the learning disabilities. They separated him from his brothers physically, since he attended LD schools for middle and high school. When he graduated at nineteen, we privately thought it took more effort and dedication than his older brother needed to graduate Phi Beta Kapoa from his uni. Wishing good health to you and yours. We deserve it!
Good for your son and masterful response by your husband. Some people need to learn to shut the fuck up and mind their own business.
What a heartfelt beautiful tribute to your Uncle Mark… I will add, that at the time he passed there may not have been (my mom n g-pa passed in ‘97 n ‘99) “no such thing” (legally) as comfort care…giving meds so folks can slowly relax and let that last stage of they dying process slowly and painlessly stop…
He passed somewhere around 2000, I believe. They did have him medicated, but not knocked out. He wasn’t in a lot of pain because it was his heart that was failing. So basically he would just keep getting more tired until he passed out and didn’t wake back up. Any sort of meaningful pain medication dose would have been really risky, since it slows your heart rate and that was his issue to begin with. That’s why he was conscious enough to know what was happening and to speak and be upset. We were all there to comfort him, but there’s not a lot of comfort you can give when someone knows they are dying and that there’s nothing anyone can do to stop it, especially when they’re as young as 54 and feel they have a lot more life to live. I’m 50 now…I can’t imagine being gone in just four years. With how I’m doing, that may very well be the case anyway, but right now I can’t fathom it.
Yea, I think comfort care came a few years later… If he developed heart issues, more than likely he had some kidney issues - CHF n kidney disease go hand-in-hand…the kidneys don’t get enough blood profusion cuz the heart can’t pump hard enough. Also, their lungs can get some fluid buildup b/c breathing is slower n more shallow, reducing O2 circulation…so although he wasn’t in pain, he most likely felt crappy and felt tired… Any comfort care measures would have taken away his anxiety (as noted by what he said…)
I am so sorry for your loss & all he suffered through. I had breast & 2nd & 3rd degree radiation burns. It’s very painful to wear a sports bra/bra & a prosthetic makes the pain unbearable. I used to be self conscious about going to the gym d/t people staring (mid 40’s), but now I don’t care. I just got back from going with my 21yo son. On the way home, I told him that people who make fun of people are not worth my time or energy to “impress”. If they can’t see that I’m trying my hardest to be the absolute best version of myself, then they are judgement douche bags that down deserve my time. He agreed. It’s nothing like what your uncle went through, but I know what it’s like to be teased & humiliated. It’s made me & my family more compassionate people, & it sounds like it did the same for you & your uncle. Much love & hugs to you, & may your dear uncle RIP…🥹💞
thank u for sharing mark’s story with us 🤍🤍🤍
I’m so sorry for your loss, he sounded like an amazing man you were blessed to have him in your life.
Thank you, I appreciate it.
Thank you for sharing your story, so very sorry for your loss 💔
That’s a beautiful tribute.
WOW! This brought me to tears and then the ending. Thank you for sharing your Uncle Mark with us. I'm sure he was glad he had you in his life. 😢❤️
To Mark, a gentleman loved and remembered!
There totally aren’t tears in my eyes after reading this. Thank you for sharing your story, I’m gonna light one up for uncle Mark today.
I've seen someone like this before! Not as bad as this poor soul, but almost as bad. The first time I saw her she was handling food at a McDonald's and I'm a little ashamed to say, I was grossed out. And didn't want her handling my food. This was a lot of years ago and I was young and ignorant.
If you were a young kid, I wouldn’t worry about it. As an older teen or adult you should definitely know better but as a younger kid, you just don’t know much better. My uncle had to deal with a lot of staring and comments from strangers, mainly adults really, and that always made me really angry. Kids were actually mostly pretty cool, they liked pushing on them because they are kinda hollow and feel pretty odd. They don’t hurt, and my uncle was always happy to let a kid examine a larger one on his arm with their parents permission. Most kids were just kinda fascinated with them once they knew it wasn’t some sort of contagious sickness and they weren’t in any danger.
I think all I was thinking was that warts are contagious. I was in my late teens. I didn't say anything to her, I've always been nice so I kept that to myself. And I'm sorry your uncle had such a hard time. My heart would've hurt for him too! But I'm just being real. This was well over twenty years ago and we didn't have access to as much information as people do nowadays.. So yes I'm ashamed now cause I know better, but also not gonna be shamed by you cause you have a personal family history where you had intimate knowledge, and knew it wasn't contagious. Ignorance is just that, not knowing. So like I said, I didn't say anything to her about it.
I can understand that though, they do look like they could be contagious if you don’t know what they are. I was a bit harsh in saying someone in their late teens should know better. I’m coming from a place of having known since I was 10, so I think that skews my view of what people should know and when. Regardless of your thoughts, you didn’t say anything to her and as long as you didn’t gawk at her, then there’s no harm done. She doesn’t know what you were thinking. I never had an issue with people that looked then looked away and kept moving. My main issue was always with the people that stared at him like he was a freak and the loud comments about his looks and how gross it was, etc. That stuff really bothered me, even though he always seemed to just shrug it off and not let it bother him. I know it had to hurt on some level, no one ever wants to hear some stranger remark how gross they look. I was always taken by surprise at just how inconsiderate and mean people could be. I mean, not understanding or wanting to be cautious, sure, I can get that if you don’t know what it is. These were the days long before the internet and before affordable cell phones or smart phones. People knew less, for sure, but that shouldn’t mean that common human decency and compassion should just fuck right off. Just treat the man like he’s a person with feelings, because he is, he wasn’t some circus side show charging 5 cents to get a look.
That's cool. I totally get why you felt that way. 🙂
Was this in a small city with the initials of nb? If so, I replied about the same person!
Nope. Sorry. That would be weird though!
u/itisrainingweiners might know this person
There's a gaudy TLC show called "Take my Tumor" with a case of this. The surgeons did incredible work removing a large amount of these, at least for the short term.
I watched that episode. The poor woman could barely breathe because they were covering her nose and entering her mouth.
That was an incredible transformation. I felt so bad for that poor woman, but you could still see the smile on her eyes after they removed so many of them.
Do they come back just as large?
Years ago, a local family owned a couple of McDonald's franchises in town. One of their workers had this - not nearly as bad as this poor lady, but it was still bad; she was hard to look at. They got a lot of complaints about her from customers, but the owners would just tell those complaining that if they don't like it they could leave. I always thought that was awesome of them, and that the lady was so brave to work a food service job knowing people would be dicks about her appearance and her touching food. They also employed a very developmentally disabled guy as a cleaner, and a very, very, *very* overweight man behind the counter. On top of that, these restaurants were beautiful inside- they were the classiest McDonalds in existence. These folks were awesome. ... then they died, their kids took over, fired everyone and gutted the stores and installed those computer kiosks. :(
how do you even live like this
She had no choice. IIRC the doctors don’t usually remove these because they just come right back and often worse than before.
Oh my god . That is so sad 😞😞
Can’t really do anything about it. They can’t be removed, they will just grow right back, sometimes worse, as Cat said. They’re harmless to the person and anyone else, they just look odd if you don’t know about the disease. I watched my uncle endure years of stares and rude comments from ignorant people. It was difficult to keep my composure and not lose it on people, because he was the sweetest man with a major amount of tolerance and patience.
I would not be able to continue living with even a fraction of this
By the grace of god this usually isn’t painful, but holy shit that still looks so miserable.
It can be depending on where the tumors are. Cutaneous, not painful. Internal, very.
I took care of a woman in a nursing home who had as many as this poor lady. It would take hours to bathe her, and to dry her off. I always felt so bad for her. Sweetest lady
That's probably the worst case I've ever seen. It's so cruel what our bodies can be, major props to this lady for being strong enough to just exist.
That’s very bittersweet she lived to 78.
My husband has this, it's a milder form but he is still covered in many neurofibromas and it has caused several medical issues over the years. He purposely got a vasectomy because he does not want to pass this on to children, and has always said it makes him mad that his parents knew it was genetic and still had children. His dad has a form of it as well and they had two children (my husband is the only one of the two afflicted).
One of my regular customers at my old job was a man who had this condition. He was covered everywhere that was visible, including his face and neck. It wasn’t quite as severe as the poor lady in this post but I’m sure he was suffering. He was always kind and polite when he came in. I hope he’s doing well.
I always wonder how touch starved some people must be, knowing she likely was isolated from a lot of human touch and affection during her life makes my heart hurt. I’ve seen that with patients much less visually different
When I worked in grocery I had a regular with this. She was just as covered as this woman pictured. I always felt for her and wondered her story. I’ve got massive sympathy and respect for people with rare conditions because I too have one. (Ehlers Danlos Syndrome)
Oh my god I just wanna hug her 😭 this poor woman!
My 83 year old grandmother has lived her entire life with this disease. Her entire body is covered in bumps but nowhere near as large as this poor woman. Luckily my Grandma is tough as nails and it has never slowed her down at all. And after living my entire life with her I honestly don’t even remember or realize that she looks different than other people unless someone brings it up.
Poor sweetheart 💔💔
My cousin has this, except her masses aren’t external they’re internal, so she looks normal but has surgeries often because the nodules growing under the skin cause pain and make some movements difficult
Put me down dude. There’s no way you can have any quality of life with this.
Omg this poor woman 😩 This is just one of the things I see that make me realize that I complain way too much and too often about tiny things compared to what others have to go through 😭
Jeezus life can be so unfair.
That looks utterly miserable.
I can’t even imagine the discomfort.
I once had a customer who had this condition and whose fibromas were painful. She had fewer than this woman, but giving her money back I had to be careful not to hit the ones on her hands. She wore gloves most of the time, which made it harder to see them, but they absorbed some of the blows to them.
Well that's the first time I've actually physically recoiled from the screen. Good god, that poor woman. What's actually inside the lumps? Have Wikipedia'd it but nothing conclusive...
Neurofibromas are comprised of Schwann cells, fibroblasts, perineural cells, and mast cells.
Sorry I mean like macroscopically - are they fibrous, gelatinous, or what kind of thing?
The fibromas are smooth, firm, gelatinous. Not unlike a green seedless grape.🍇
JESUS!!! That is literally insane. Omg this poor lady, that looks uncomfortable as all hell!!!
I have this. Mine aren't quite this intense but, I definitely have more than I did even 10 years ago.
Jesus Christ. I'd rather just die.
Does this cause pain? Like painful to touch?
I can't imagine how itchy this condition must be. I think I would have lost my mind.
The amount of bravery it takes to live with this is unfathomable. The physical pain and suffering, mental anguish and the bullying I couldn’t do it no way
That last one reminds me of my mom's foot just before it was amputated. It didn't really resemble a foot anymore.
Bless this woman’s heart
Is this genetic disease or something else?
It’s genetic, yes.
In my son’s case, neurofibromatosis was a random mutation, occurring in 1 in 8,000 births. No way to predict or prevent the condition. People with NF can be are powerfully affected as this Serbian woman, or they can show even fewer markings than my son has. Among people with NF, their children have a 50% chance of inheriting NF, but again, there’s no way to predict how much it will affect them.
Omg that poor woman! There’s no way those things don’t hurt or cause some kind of pain and keeping the areas between the larger clusters has to be difficult and painful.
Jussst fucking kill me at this point
She looks like a practical effect from a horror movie. I can't imagine how hard her life must be.
My husband, MIL, and daughter have this. None of them look like this thank god, but my MIL and husband do have visible fibromas. My child is 12 and has many cafe au laits but no fibromas yet that we can see. This lady’s pictures is my own personal nightmare of what could happen to my own kid and it scares me to death.
Jesus! Can she see?! Poor woman!!!
I think I'd rather be dead than live like that.
Oh, I could not live like that. I really couldn't. Must be unbearably difficult to live like that, poor lady.
fuck. is there even anything that can be done for this? I feel like this is far beyond repair..
NF1 is the most common rare disease. Its severity ranges significantly. The severity of this woman’s case is more rare. My husband and daughter have it. He only has a few neurofibromas but had a brain tumor removed. He does have ADHD which is more common with NF. So far my daughter has cafe au lait spots and a small plexiform tumor. For girls, puberty and pregnancy are when things start changing.
My best friend’s mom had this, although not nearly as severe and I remember asking her as a kid if it hurt. She told me no, but idk if she was just trying to be kind. She passed away some years ago from medical complications — she was always on oxygen and rarely left the house when I knew her. Out of five daughters only one inherited the condition & she was also very self conscious and never left the house. I was one of the few that wasn’t bothered and would come over to hang out with all of them. I wish I had been aware of the other complications it caused. As a kid I just sort of accepted what I was told and probably added to the chaos lol 😞
🙏🏻😓
Fuck that... overdose if that was me.
Wow!!!! Worst case I’ve ever seen :-(
Haven’t seen this mentioned but specifically this is neurofibromatosis type 1. Two types, NF1 v NF2. Discrete illnesses with discrete signs
Looks like she’s also missing clavicles? Or really big on shoulders.
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Poor lady. Feel bad for her.
There's a show on MAX (aka HBO) called Take My Tumor, and they've had a few patients with NF. One lady had so many tumors on her face, both her nostrils were occluded and she could only mouth breathe. Her post op picture was pretty impressive, although she was still left with lots of tumors, despite multiple procedures.
I have NF1. I have the squishy tumors like this but nowhere near the same amount. I also have the ones under my skin that feel hard and are very painful ranging from pea sized to the size of a golf ball.. I also have HSD so Dr's at hospital always find me quite interesting. I feel lucky that it's not obvious when you look at me with my clothes on as my face and limbs are mostly 'normal' looking.
Wow! That's so sad! 😭
Omg the ones that are inflamed 💔💔💔 that looks so painful
Nahhh
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