1. I watched a documentary about them a while ago. Adam is an extraordinary person who carries his illness with great dignity.

  2. I guess I should clarify that they were born identical but the tumors started growing on Adam’s face when he was a kid.

  3. I thought that was him! He has a strong performance that is an important turn in the film. I love that movie

  4. I lost an uncle to it, but he was 14 and it was the 70s. My grandpa had it, and my mom and aunt have it too. I also got it but I'm the least effected of the remaining family.

  5. Hey, my brother has NF! I haven't seen any real representation of it my entire life until like the last week or so, but hey, better late than never.

  6. The guy that the post is about has done lots of documentaries about the condition. He also started alongside scarlet Johansson in under the skin. Might be worth checking out

  7. I actually have Neuro myself. I only have 1 large lump on my hip. I have some really tiny ones under the skin on my chest and stomach, they're not noticeable at all unless I have my shirt off. I have plenty of the "coffee stain" discolorations tho. Alot of them just look like freckles and shit.

  8. I also have many of the “cafe au lait” spots all over my body. When I was a child, doctors said that it’s a sign that I might have NF and I had to go through a few CAT scans and such to make sure I didn’t have it. I didn’t, thankfully.

  9. I knew a guy at work with neurofibromatosis. He was the cleaner and a nic guy. Unfortunately his extra growths put pressure on his brian and gut and he died in his early 50s. I still work with his older brother who is the only male in the family to not be affected.

  10. And he and Sebastian Stan just finished filming a movie about him! It's a fiction about what would happen if he got full cosmetic surgery. I'm super excited for it!

  11. Ahh yes. I was diagnosed with NF1 as a baby. My family spent 21 years waiting for my tumors to grow until I had the option to do a blood test (which insurance of course didn’t cover.) Found out I had a different disorder, one with no threat to my quality of life or accompanying looming fears. I feel for them both. The one who is spoken to with condolences, and the one who feels the guilt of it not being him.

  12. 1 in 3000. That sounds like a low number (I know it isn't) but that's uncomfortably high. And that's just one issue people can be born with... Jfc.

  13. My niece has nf, she had tumours removed from her brain when she was 6 and has tumours on her optic nerves, audio nerves and along her spine. Worse possible outcome is that she will become blind, deaf and paralysed but it may never come to that. At the moment her hearing is probably most at risk but she already knows a lot of sign language, she’s 13 now and still doing well

  14. I am going straight to hell for how much I laughed at these comments. At least I'll know people when I get there.

  15. As someone with mild NF my worst fear is that it can get worse….which it can with age, stress, and pregnancy. I’ve been blessed with being able to live a relatively normal life beyond routine MRIs to check for tumour growth. I did have one on my brain that I had to get removed. So while I may not have the perfect body thanks to the disease, I can say that I am a literal X-Men since it’s caused by a mutation, and to kill the brain tumour they shot gamma rays into my brain like the Incredible Hulk, so that’s fun.

  16. I have it too, but not all people with it look like that. I have had over 40 surgical procedures and I am only in my early 20’s. It is an extremely painful diseases since the tumors grow on your nerve endings. Please donate to The Children’s Tumor Foundation. We still do have a cure and no proper treatment.

  17. Dude, please read up on neurofibromatosis before you say something like that. Neurofibromatosis can express itself in different ways and severities. Just because the left guy doesn't have the huge fibromas in his face like the guy on the right doesn't mean he doesn't have any at all, and he could have more issues with the neurological side of the condition, which you wouldn't be able to tell from just one picture.

  18. Neil has debilitating epilepsy and such severe memory issues that he struggles to consistently remember where or when he is. Adam has severe tumorous growths, but fewer of the "internal" symptoms and has starred in several film and television productions. Both are profoundly affected by their condition, and this is a fantastic example of "do not fucking judge another's life quality without living it".

  19. There’s type 1 and type 2. Type 1, tumors show outside the body. Type 2, the tumors are inside the body. I have type 2 and I feel for them both ugh horrible disease

  20. Adam has a YouTube channel where he uploads gaming videos and does some live streaming. He's also been in afew great films. I've spoken to him afew times on YouTube and is honestly a very sweet man. I recommend his channel

  21. A dear friend of mine left us on his own terms 8 years ago, due to this condition. He had little tumours all over his body and the ones near his spine meant he would soon be paralysed. Miss you so much bud x

  22. Wow, I too have NF. No outward tumor growths on me, but my recently passed mother had some on her. So this kinda mirrors my own life too (Except my mom's wasn't as bad as this gentleman's tumors)

  23. It’s such a weird thing as well, just starts and stops growing at seemingly random times. My mum found out she had NF2 nearly 20 years ago and hasn’t had many problems apart from vertigo and tinnitus (tumours are in her brain, next to the ears on both sides). Then a couple of weeks ago her hearing just switched off, they gave her another MRI and turns out the tumours doubled in size in like a six month period after not really growing in 20 years. Just freaks me out that she woke up in the morning hearing pretty well, and then went to sleep as a fully deaf person.

  24. So how do you know you have it if there are no tumors showing and you didn’t get checked for internal ones? Would be interesting to know, since I might need to get checked (family history).

  25. Like, I've seen this guy and I know he's real and what his face looks like... but this photo seems photoshopped

  26. I was diagnosed with NF as a teen - I have freckles down the left side of my body (literally a straight line down) and a few cafe au lai spots and that's the only symptom I've ever had. NF is weird.

  27. I also have that disease, although it's not really visible from the outside, with a few exceptions of course

  28. I have nf1. Not all of us have such obvious signs. Mine are small bumps on my tummy under the skin. A few on my arms

  29. I have nf1 and currently pregnant. Literally praying daily my baby doesn’t have it. For the next one I’ll try In vitro to avoid this being passed on

  30. That must suck knowing what you could've looked like if it weren't for that unfortunate disease

  31. Of the word “neurofibromatosis”? I def copied the word because I don’t trust my memory 😂😂🫠

  32. Both genetic and a mutation. Starts as a random mutation then is passed on (genetic). Anyone who has it has a 50% chance of passing it on to their child

  33. Damn, I wonder if Neil feels guilt that he was the lucky one that isn't deformed. Just complete luck, a roll of the dice.

  34. It is very difficult to live with this... I also have it its a good thing i mean it only affected my arm. There is lots of tumors on it.... Ive had 5 surgeries till now 2 majors ...... Hope they find a cure for that..

  35. You could tell me this was the same guy photoshopped and I’d believe you. It’s crazy that something can affect a person so significantly you couldn’t tell they were basically the same person looks wise

  36. Oh hey, didn't expect to see my genetic disease on reddit today. I too have mine internal, and have already had to have my first spine surgery, it's fun.

  37. If you look closely, you’ll notice one of them is married. I’m not saying that marriage will do that to you, but marriage will do that to you

  38. NF1 causes (often) benign tumors to grow on nerve endings. The twin on the left probably has some small subdermal (underneath the skin) tumors while the one on the right has many large ones.

  39. I can't recall the name of that documentary. Though there is a high probability that you are right and that they may have thought about it a lot, none of it comes through in a bad way in that piece. Adam has been able to live a life where his condition, though quite visible, is not the center of his being. I admired him for that and still do. They are both very supportive of each other, as well.

  40. As a twin whose also married to a twin so I get twin relationships, this is really sad. But I love their story and how they stick together

  41. NF indeed affects people to extremely significantly varying degrees but it doesn't just stop being a concern completely for even those with minimal symptoms :)

  42. Just thought I would add this for people that wonder how NF affects Neil. He has short term memory loss, and epileptic seizures.

  43. I used to see Adam Pearson all the time around my town. I think he lives here. Since I started driving I don’t use public transport much, but I’m sure he’s still riding the trams and busses.

  44. I guess I should clarify that they were born identical but the tumors started growing on Adam’s face when he was a kid.

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