“She Named Her Tumour ‘Frank’: Charmaine’s 4,000-Mile Fight for a New Life”

Charmaine Sahadeo, 42, from Chaguanas, Trinidad, is living with a tumour growing inside her mouth—one she even named “Frank”—and it has made everyday things like eating and speaking incredibly difficult for the mother of two.

Charmaine Sahadeo, 42, from Chaguanas, Trinidad, has an extremely rare disease (Image: TLC)

A woman who has struggled to breathe, eat, talk, and even walk because of a rare condition that causes thousands of dangerous tumours to form all over her body has traveled 4,000 miles in hopes of relief through surgery.

Charmaine Sahadeo, 42, from Chaguanas, Trinidad, is battling NF-1 neurofibromatosis, a rare disorder. Tumours have appeared on her scalp, inside her mouth, across her face, and on her arms, legs, buttocks, breasts, and genital region.

Many of the tumours have grown so large that they are nearly blocking her nose, leaving her barely able to breathe normally. A massive lump on her leg has also limited her mobility so severely that she can only take a few steps at a time, and she must physically adjust the lumps just to sit down and use the bathroom.

The tumour inside her mouth—“Frank”—has made it hard for her to eat and talk. Because her condition is so debilitating, Ms Sahadeo’s greatest fear is that she will eventually be unable to breathe or call for help, and that she could end up dying alone.

Speaking in TLC’s newest episode of Take My Tumour, she shared: “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 called von Recklinghausen’s disease—affects about one in 3,000 people worldwide. Ms Sahadeo’s case is described as extremely severe, and there is currently no cure.

The condition occurs due to a change in the NF-1 gene, which controls a protein involved in regulating cell growth and is believed to help prevent tumours. The tumours that develop can be either cancerous or non-cancerous.

Although NF-1 can be inherited, around 30 to 50 percent of people with the disorder have no family history of it. Ms Sahadeo said her mother also has NF-1 neurofibromatosis, but her mother’s symptoms are nowhere near as severe.

The disease has shaped every part of her life. She never learned to drive, struggles to find clothing that fits properly, and avoids going out in public because of the teasing and judgment she faces. She explained: “This condition is very hard because people just like to stare and then have all kinds of negative things to say.”

As the tumours have moved closer to her eyes, they have caused double vision and blurred sight, and she has been unable to fully enjoy time with her granddaughter. Ms Sahadeo said: “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.”

Originally from Trinidad, Ms Sahadeo noticed lumps beginning when she was 13 years old. Back then, they were smaller and less noticeable—only “a couple on my face.” Now, she says she has “thousands” across her body.

Searching for help, Ms Sahadeo connected with Dr Ryan Osborne, a head and neck cancer surgeon in Los Angeles and the director of the Osborne Head and Neck Institute. Because her condition had progressed so severely, Dr Osborne warned she was “encroaching on some dangerous territory,” saying it was “urgent right now that we intervene.”

Removing thousands of tumours would be complex and would take time, requiring many procedures over more than two months. While preparing for surgery, her medical team faced a major obstacle: the tumours covered so much of her body that they could not find a vein to deliver anesthesia, meaning they couldn’t safely put her to sleep for surgery.

Instead, the team chose to use local anesthesia, numbing only the areas being treated rather than sedating her fully. Ms Sahadeo remained awake for a 13-hour operation. Dr Osborne was able to remove dozens of tumours, including several large growths on her face, “Frank” inside her mouth, and the extremely large tumour on her leg.

Over the following 10 weeks, Dr Osborne performed 24 surgeries on Ms Sahadeo, totaling 60 hours in the operating room. He removed more tumours than she expected, and she said: “Life is 100 percent better for me. I love the way that I look now.”

Ms Sahadeo shared that she feels 98 percent better than she did before the procedures and finds herself smiling more. With the tumour removed from her leg, she can walk again and is finally 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.”