A HEARTWARMING video shows the astounding transformation of a woman whose body was engulfed in thousands of bubble-like tumours that made it hard for her to walk, eat and even breathe.
Charmaine Sahadeo, 43, from Trinidad, says she feels “beautiful” after undergoing 60 hours of surgery to remove the growths coating her face, scalp, body and limbs.
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The mum of two suffers from NF-1 neurofibromatosis, a rare genetic condition that causes benign tumours to form on nerve tissue.
Affecting one in every 3,000 people worldwide, Charmaine’s is an exceptionally severe case.
She inherited the condition from her mum, who had the same faulty gene, and began exhibiting symptoms when she was just 13 years old.
It started off as only “a couple” tumours on Charmaine’s face.
Read more on rare conditions
But after becoming pregnant with her son Osiris, the mum’s body was coated in thousands of tumours.
Aside from the smaller, bubble-like tumours, Charmaine also had a large mass on her leg that made it hard for to walk more than a few steps at a time.
Another tumour in her mouth – which she nicknamed ‘Frank’ – got in the way of her talking and eating.
Charmaine’s breathing was even compromised, as tumours ringed her nostrils to the point that there was no opening.
As a result of the disease, the mum could only wear loose-fitting clothes to avoid making her tumours bleed, and couldn’t leave the house 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.”
What is Neurofibromatosis type 1?
NEUROFIBROMATOSIS type 1 (NF1) is a genetic condition that causes tumours to grow along your nerves.
The tumours are usually non-cancerous, but may cause a range of symptoms.
It’s a condition that’s inherited through genes – if your parent has a mutation to their NF1 gene, you have a 50 per cent chance of developing it.
Symptoms tend to develop gradually over the years and their severity varies from person to person.
In most cases, the skin is affected, causing symptoms such as:
- Birthmarks known as café au lait spots, which are light or dark brown patches that can be anywhere on the body
- Soft, non-cancerous tumours on or under the skin (neurofibromas)
- Clusters of freckles in unusual places – such as the armpits, groin and under the breast
- Problems with the bones, eyes and nervous system
Around 15 per cent of children with NF1 develop a tumour on their optic pathway, which can cause vision problems.
Some children with the condition also have high blood pressure.
Many children with NF1 have one or more problems affecting their physical development, including:
- A curved spine (scoliosis) – thought to affect around 10 per cent of children with NF1
- A larger-than-average head – this occurs in around half of all children
- Smaller size and lower weight than normal – this is common in many people with NF1
Neurofibromatosis type 2 is much less common than NF1 and caused separate symptoms.
Source: NHS
Her biggest fear was that she’d become unable to breathe and die as she wouldn’t be able to call for help, she said in a recent episode of TLC’s Take My Tumor.
With doctors in Trinidad unable to help with her condition, Charmaine got in touch with Dr Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute.
“All I’m asking for is just a little relief. I want my face to clear up so I will see and breathe properly and I will not have a problem with my mouth,” she told TLC.
She flew to California to meet Dr Osborne, who said he’d never encountered a case as severe as Charmaine’s.
“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 feared Charmaine was close to being in respiratory distress because of the rampant growth of her tumours, deciding “urgent” intervention was necessary.
The specialist had to tread carefully in removing the tumours, because with each removal would also mean taking off a bit of Charmaine’s skin.
“If I take off too much, then you have a risk of infection,” he told her during a consultation.
“We have to do it in phases to allow your body to start the healing process.
“A lot of it’s going to be based on how much pain you can tolerate.
“You’re not going to feel anything during the surgery. It’s when you wake up.
“If I took all this off, it would be as if someone skinned you alive and I couldn’t give you enough pain medication to keep you comfortable.”
Despite knowing she’d be in pain, Charmaine decided to seize the opportunity and undergo surgery.
The medical team ran into a major roadblock in the lead-up to Charmaine’s surgery, as they were unable to find a vein through which to give her aneathesia because so much of her skin was coated in tumours.
This meant they wouldn’t be able to sedate her to operate.
Instead, Charmaine had areas of her body numbed with local anaesthetic and underwent 13 hours of surgery completely awake.
Over the course of 10 weeks, Dr Osborne and his team performed 24 surgeries on the mum, amounting to about 60 hours.
TLC showed Charmaine four weeks after her procedures, back home in Chaguanas, Trinidad.
“Dr Osborne was able to remove more bumps than I was expecting, so it feels nice,” Charmaine said, appearing to move more easily around her home.
“Life is a hundred per cent better for me. I love the way that I look now.”
With the largest bubbles now gone from Charmaine’s face, her features are properly visible for the first time in years and she’s able to smile.
She’s able to apply makeup easily across her face, and most importantly can see and breathe much better.
“I feel beautiful, I really do,” Charmaine said.
The mum can also see the difference in her body as she puts on a dress or skirt, as Dr Osborne was able to remove a large tumour from her leg.
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