Woman has 'one-of-a-kind' disease that causes thousands of life-threatening tumours to grow all over body

A woman with an extremely rare disease which causes 'thousands' of life-threatening tumours to grow all over her body has told how undergoing 60 hours of surgery to remove them while completely conscious was her 'last hope'.

Charmaine Sahadeo, 42, is covered in the unusual growths - that have taken over her scalp, mouth, face, legs, buttocks, genitals and breasts - which leaves her struggling to breathe, eat, talk or walk.

The mum, from Chaguanas, Trinidad, suffers from a 'one-of-a-kind' genetic condition, called NF-1 neurofibromatosis, which causes tumours to grow along nerves in the body.

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According to the NHS, the severity of the condition varies, but most sufferers experience issues with their skin.

Symptoms include light or dark brown patches showing up anywhere on the body, soft, non-cancerous tumours on or under the skin, clusters of freckles in unusual places and problems with your bones, eyes and nervous system.

Charmaine's growths are almost entirely obstructing her nose, meaning she really struggles to breathe, while another tumour in her mouth - which she has dubbed 'Frank' - means she finds it difficult to eat and talk.

Another large lump on her leg means walking more than a few steps at a time is unbearable, while she has to rearrange some of the growths just to simply sit down or urinate.

In utter desperation, the mum contacted head and neck surgical oncologist and director of the Osborne Head and Neck Institute, Dr Ryan Osborne, to try and help her.

TLC

Her journey since meeting the Los Angeles-based specialist has been documented in the TLC mini-series titled Take My Tumor, as Charmaine pleaded with him to provide her with a 'little relief'.

She explained on the show: "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."

"This condition is very hard because people just like to stare and then have all kinds of negative things to say," the 42-year-old added.

Due to being diagnosed with NF-1 neurofibromatosis at age 13, Charmaine has to wear baggy clothes, has never learned to drive, and has to deal with stares from strangers.

The tumours are now approaching her eyes, which leaves her with double and blurred vision - but despite all her debilitating symptoms, her sons say she never complains.

The patient told Dr Osborne that tumours first began to appear as a teenager, but the 'couple on her face' soon turned into 'thousands' of growths across her body.

He described her case as 'extensive' and 'unusual', while warning her that it was 'urgent right now that we intervene' as she was 'encroaching on some dangerous territory'.

TLC

Dr Osborne explained that although other medics may view medical intervention as 'high risk', he 'sees the opposite of that, which is high impact'.

He said: "She has an unusual presentation of neurofibromatosis. It's literally everywhere.

"I have personally never seen a patient clinically, and I have never seen one in a textbook, have it quite as bad as Charmaine. She appears to me to be a one-of-a-kind."

Dr Osborne performed several surgeries - over a span of more than two months - to get rid of the masses which blanket Charmaine's skin.

For each tumour he removes, he also removes pieces of skin, meaning the risk of infection is high.

"You’re not going to feel anything during the surgery. It’s when you wake up. If I took this all off, it would be as if someone skinned you alive and I couldn't give you enough pain medication to keep you comfortable," Dr Osborne warned.

TLC

But Charmaine was still determined to go through with it - even when it emerged that she couldn't be knocked unconscious for it as medics couldn't find a vein to inject her because of the amount of tumours in the way.

Instead, she was simply given local anaesthetics - which only numbed the affected area for the 13 hour stints on the operating table - so she was completely awake.

Dr Osborne managed to get rid of dozens of growths, including Frank, the large tumour on her leg and numerous intruding ones on her face.

Over a ten week period, Charmaine underwent 24 operations which totted up to a grand total of 60 hours of surgery.

Discussing the results, she excitedly said: "Life is 100 percent better for me. 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."

"I feel beautiful. I really do feel beautiful now. I feel fantastic. I came back a different person," Charmaine beamed. "I cannot expect anything better."