"Tumorous Transformation: Woman's Rare Disease Spawns a Body of Growths"

"Tumorous Transformation: Woman's Rare Disease Spawns a Body of Growths"
"Tumorous Transformation: Woman's Rare Disease Spawns a Body of Growths"

Woman's 'one-of-a-kind' disease causes tumors to grow all over body

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.'

The Trinidad native first began developing tumors when she was 13 years old, but they were smaller and less intrusive

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 blur

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