A mom who struggles to breathe, eat, talk and walk due to a rare that's caused tumors to grow across her entire body is terrified of dying alone as they could impact her ability to call for help. 42-year-old Charmaine Sahadeo, from Chaguanas in , is battling a rare condition called NF-1 neurofibromatosis. This unusual condition means tumors to grow all over her body, including her scalp, arms, legs, breasts, buttocks and genital area. These terrible growths are making everyday life very hard for Charmaine. A cluster of tumors is almost completely blocking her nose, impacting her ability to breathe normally. Another large tumor sits on her leg which makes it tough for Charmaine to walk even a few steps. To sit down or go to the bathroom, she has to move around the tumors. One particularly pesky tumor, which Charmaine has named 'Frank', lives in her mouth. Because of Frank, the brave mom finds it hard to eat and speak. Charmaine's biggest worry is that, because she has so much difficulty already, she won't be able to call for help if she can't breathe anymore - and that she might die alone. Charmaine shared her fears in an episode of Take My Tumour on , saying: "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." NF-1 neurofibromatosis, also known as von Recklinghausen's disease, affects about one in every 3,000 people across the world. But Charmaine's case is extra intense. Unfortunately, there isn't a cure right now. The condition is due to a mutation in the NF-1 gene that controls cell growth and tumor prevention. The resulting tumors can be cancerous or benign. Although it's possible for the disease to be inherited, 30 to 50 percent of those affected have no family history of it. Charmaine's mother also has neurofibromatosis type 1 (NF-1), but her case isn't as severe. This disease impacts every aspect of her life. She hasn't learned to drive, struggles to find fitting clothes, and faces public ridicule. Speaking about her struggles, 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, causing double and blurred vision, which prevents her from playing with her granddaughter. She expressed her sorrow over not being able to play outdoors with her granddaughter. "It hurts a lot, not being able to be outside playing with her," she shared. "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." Charmaine, originally from Trinidad, started developing lump-like tumors at the age of 13, but they were smaller and less noticeable. Initially, she only noticed 'a couple' on her face, but now she has 'thousands' covering her body. In her quest for relief, Charmaine found Dr Ryan Osborne, a head and neck
cancer surgeon based in
Los Angeles. He warned that her severe neurofibromatosis was "encroaching on some dangerous territory," and it was "urgent right now that we intervene." However, removing the thousands of tumors would be a challenging and lengthy process, requiring many surgeries over more than two months. Preparing for surgery, Charmaine's medical team faced a significant hurdle: Her tumors covered so much of her body that they couldn't find a vein for anesthesia, meaning they couldn't put her to sleep for the operation. Opting for local anesthesia, which numbs only the affected area, Charmaine stayed awake for 13 hours of surgery. Dr Osborne successfully removed dozens of tumors - including several large ones on her face and 'Frank' in her mouth, as well as the extremely large tumor on her leg. Over the next 10 weeks, he operated on Charmaine 24 times, totaling 60 hours. 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." Charmaine shared that she feels almost all the way better after her surgeries and now she smiles a lot more. She's happy because, with the tumor gone from her leg, she can walk and have fun with her granddaughter. She expressed her joy by saying: "I feel beautiful. I really do feel beautiful now. I feel fantastic. I came back a different person. I cannot expect anything better."