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Posted: 4/3/2024 11:42:32 PM EDT
A woman with a rare disease that causes thousands of life-threatening tumors to grow all over her body traveled 4,000 miles for surgery to remove the growths that would allow her to breathe, eat, talk and walk.
Charmaine Sahadeo, 42, from Chaguanas, Trinidad, suffers from the rare condition NF-1 neurofibromatosis. Ms Sahadeo has growths on her scalp, in her mouth, all over her face, arms, legs, buttocks, breasts and on her genital region. The tumors are almost entirely blocking her nose, making it almost impossible to breathe. A large mass on her leg means she can't walk more than a few steps at a time and must adjust the lumps in order to sit and urinate. A tumor growing in her mouth - which she named 'Frank' - makes it hard for the mom-of-two to eat and talk. Because of her debilitating condition, Ms Sahadeo's biggest fear is that she will become unable to breathe or call for help, and ultimately die alone. She said in TLC's newest episode of Take My Tumor: 'All the bumps are getting so big. I am afraid that if I cannot breathe properly I will die. I might not even be able to reach out to someone in time to tell them.' About one in 3,000 people across the globe suffer from NF-1 neurofibromatosis, also known as von Recklinghausen’s disease. Ms Sahadeo's case is extremely severe and there is no cure. The condition occurs because of a mutation on a person's NF-1 gene, which regulates a protein that plays a role in cell growth and is thought to be a tumor suppressor. The tumors that grow can be both cancerous and non-cancerous. In addition to growths, neurofibromatosis can lead to an abnormally large head, short stature, heart problems, seizures and learning disabilities, though Ms Sahadeo did not discuss these on the TV show. While it can be passed down through families, about 30 to 50 percent of people who have the disease do not have any family history of it. Ms Sahadeo's mother has NF-1 neurofibromatosis, though she said it is nowhere near as severe as her own. The disease has impacted every aspect of her life. She never learned to drive, cannot wear properly fitting clothes and can't go into public without being heckled. She said: 'This condition is very hard because people just like to stare and then have all kinds of negative things to say.’ The tumors are encroaching on her eyes, giving her double and blurred vision and she can't play with her granddaughter. Ms Sahadeo added: 'It hurts a lot, not being able to be outside playing with her. I would like to be able to take her and just walk a couple houses up, [but] since she’s born I have not had that experience.' The 42-year-old has to wear loose clothing in order to fit them over her large tumors In search of relief, Ms Sahadeo discovered Dr Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute Dr Osborne said she is 'encroaching on some dangerous territory,' adding it was, 'urgent right now that we intervene'. Preparing for surgery, the medical team couldn't find a vein to infuse anesthesia through because of all the tumors. Ms Sahadeo underwent 60 hours of surgery in total and the doctor was able to remove hundreds of tumors The left photo shows Ms Sahadeo before her surgeries and the right shows her after more than 60 hours of operations Dr Osborne was able to remove more tumors than she expected, and she said: 'Life is 100 percent better for me. I love the way that I look now' Four weeks after her last surgery, back home in Trinidad, Ms Sahadeo said: 'Life is 100 percent better for me.' Dr Osborne was able to remove more tumors than she expected, and she added: 'I love the way that I look now. 'Before I couldn’t see anything at all - like my face - but now you can naturally see my eyes. You can see my nose. You can see my mouth. I can see properly and most important, I can breathe much better.' Ms Sahadeo said she feels 98 percent better than she did before her procedures and she smiles more now. With the tumor removed from her leg, she can walk and is able to play with her granddaughter. She said: 'I feel beautiful. I really do feel beautiful now. I feel fantastic. I came back a different person. I cannot expect anything better.' More |
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Sounds like she's making the best of her situation. Good for her.
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The will to live is strong ,man thats got to be really hard to take mentally and physically .
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Man, that’s tough. My worries have no comparison. I can’t fathom the strength that woman must have.
God bless Dr Osborne. |
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That's so sad.
I truly feel for that poor woman. If there's a Heaven, surely, she's got a place reserved. |
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Quoted: Man, that's tough. My worries have no comparison. I can't fathom the strength that woman must have. God bless Dr Osborne. View Quote Just when I think I have it tough, I see someone else that has a far worse situation in life that makes my issues pale in comparison... |
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God bless the doctors and nurses that can work on her. I couldn’t do it.
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I have a friend with that though not as severe. Thankfully she is well adjusted to the looks stranger's often give. God bless everyone with that condition.
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I don't think this is something I needed to know. Thank God there was some help available.
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Quoted: Yep, on everything you said!!! Just when I think I have it tough, I see someone else that has a far worse situation in life that makes my issues pale in comparison... View Quote View All Quotes View All Quotes Quoted: Quoted: Man, that's tough. My worries have no comparison. I can't fathom the strength that woman must have. God bless Dr Osborne. Just when I think I have it tough, I see someone else that has a far worse situation in life that makes my issues pale in comparison... and she can have a huge smile afterwards despite still having very bad issues. absolutely - a good reminder of how extremely fortunate I am. |
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She has two kids…
God damn..fucking anyone can have kids. Even tumor lady. |
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What Dr. Osborne did was incredible.
Wonder if her kids got it too. NF-1's autosomal dominant, so if her husband's "normal", her kids still have a 50% chance of inheriting it. If her husband has NF-1 as well, her kids will 100% inherit it. |
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Fuck if there was ever a good case to use CRISPR or some gene changing shit for a good cause. This would be it. I feel so bad for her. Fucking fuck.
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I actually knew a lady in Alaska that had that. Super nice person too.
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I was surprised at the amount of compassion and empathy that was being shown on this thread. With Arfcom's track record, I expected the scumbags to go gutter at her expense pretty quickly. It seems to be the way, to kick someone when they are down, and revel in their suffering.
But at least it went 24 posts. |
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Honestly I'd eat a gun at that point. Regardless of my outward appearance I'd be worried internally I was messed up as well.
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Quoted: I was surprised at the amount of compassion and empathy that was being shown on this thread. With Arfcom's track record, I expected the scumbags to go gutter at her expense pretty quickly. It seems to be the way, to kick someone when they are down, and revel in their suffering. But at least it went 24 posts. View Quote |
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I've seen a white dude with those in the gas station a few years back. It wasn't as nearly as bad as hers but it was all over his face except his forehead.
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God bless her. What an awful illness and what an amazing positive outlook she has in spite of.
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When I worked at a dealership in the early 90s there was a parts delivery guy from one of the parts stores around town who had that condition.
He was a great guy. I always wondered how he managed to exist with people reacting horribly around him. He was in his 60s back then. I'm sure he's long gone now. I hope he's at peace. |
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That is so sad. I used to wait on a man who had that though, obviously, not to that extent. He had the growths all over his face and body (or at least his arms which were all I ever saw). I tried to be extra nice and *normal* to him when he came in.
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Hope she continues to get the medical help she needs.
If you thinks life's hard, it could always be worse. |
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There's an older lady in our church with that. She looks like the 'after' photos in the OP. Super nice, works in kids' church.
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I saw this TV show last night and that woman is truly amazing. You never heard her crying about it, in fact her friend complained about the way people reacted to her way more than the woman afflicted. She smiled often and never gave any indication that she was distraught about her situation.
She did not always have a covering of tumors, they came as she aged so it's likely she had her children before it got so bad. Her mother had the disease but to a much lesser extent apparently. Her sons are late teens/early 20s and both show no signs of tumors and her granddaughter so far appears normal. That doctor is a Saint for helping this woman and clearly has made a massive improvement to her life. 2 days after having a 12 hour surgery removing many of tumors under local anesthetic, because they couldn't find a vein for the IV, she said her pain was a 1 on a scale of 10. Truly impressive. |
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