A mom with a horrific disease that caused thousands of agonizing tumors to grow all over her body has spoken of her joy at having them removed after more than 60 hours of surgery – saying of her incredible transformation: ‘I really do feel beautiful now.’ 

Charmaine Sahadeo, 42, from Trinidad, suffers from the rare condition NF-1 neurofibromatosis, which resulted in growths on her scalp, in her mouth, all over her face, arms, legs, buttocks, breasts and on her genital region. 

She has had the condition since she was born, but says it became ‘a lot worse’ following the birth of her second child around 20 years ago, after which she started developing ‘thousands of lumps’.

The debilitating growths turned her life upside-down, with Charmaine previously blaming her disorder for the breakdown of her 18-year marriage, as well as her financial difficulties due to employers being horrified by her appearance.

She has also had to endure cruel comments and stares from strangers for years, and after two surgeries in her home country decided she needed to seek more help abroad, launching a fundraiser.

After years of waiting, she finally found Dr Ryan Osborne, a renowned head and neck surgeon based in LA who was determined to help her overcome what is widely seen as one of the most serious cases of neurofibromatosis in the world. 

The grandmother traveled 4,000 miles for the life-changing surgery, which has allowed her to breathe more easily, enabled her to walk and play with her granddaughter, and has left her feeling like a new woman.

Ms Sahadeo said she feels 98 percent better than she did before her procedures and she smiles more now

Ms Sahadeo said she feels 98 percent better than she did before her procedures and she smiles more now

Ms Sahadeo said she feels 98 percent better than she did before her procedures and she smiles more now

The left photo shows Charmaine Sahadeo before her surgeries and the right shows her after more than 60 hours of operations

The left photo shows Charmaine Sahadeo before her surgeries and the right shows her after more than 60 hours of operations

The left photo shows Charmaine Sahadeo before her surgeries and the right shows her after more than 60 hours of operations

Ms Sahadeo before her surgery with her sons, Caleb and Osiris, who are now in their 20s

Ms Sahadeo before her surgery with her sons, Caleb and Osiris, who are now in their 20s

Ms Sahadeo before her surgery with her sons, Caleb and Osiris, who are now in their 20s

Charmaine’s tumors were almost entirely blocking her nose, making it nearly impossible to breathe, and one growing in her mouth – which she named ‘Frank’ – makes it hard for the mom-of-two to eat and talk.

A large mass on her leg meant she could not walk more than a few steps at a time and had to adjust the lumps in order to sit and urinate.

Because of her debilitating condition, her biggest fear was that she would 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.’

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 encroached on her eyes, giving her double and blurred vision and meaning she couldn’t play with her granddaughter.

Ms Sahadeo added: ‘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.’ 

Charmaine Sahadeo from Trinidad, suffers from NF-1 neurofibromatosis, a rare condition that causes tumors to form across the body

Charmaine Sahadeo from Trinidad, suffers from NF-1 neurofibromatosis, a rare condition that causes tumors to form across the body

Charmaine Sahadeo from Trinidad, suffers from NF-1 neurofibromatosis, a rare condition that causes tumors to form across the body

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

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

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

The 42-year-old has to wear loose clothing in order to fit them over her large tumors

The 42-year-old has to wear loose clothing in order to fit them over her large tumors

The 42-year-old has to wear loose clothing in order to fit them over her large tumors

In search of relief, Ms Sahadeo discovered Dr Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute

In search of relief, Ms Sahadeo discovered Dr Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute

In search of relief, Ms Sahadeo discovered Dr Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute

Dr Osborne said she is 'encroaching on some dangerous territory,' adding it was, 'urgent right now that we intervene'.

Dr Osborne said she is 'encroaching on some dangerous territory,' adding it was, 'urgent right now that we intervene'.

Dr Osborne said she is ‘encroaching on some dangerous territory,’ adding it was, ‘urgent right now that we intervene’.

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.

How compassionate LA specialist helped mom covered in tumors through incredible series of operations in global first

Head and neck surgeon Dr Ryan Osborne

Head and neck surgeon Dr Ryan Osborne

Head and neck surgeon Dr Ryan Osborne

Dr Ryan Osborne is the brave surgeon who took on this ‘one-of-a-kind case’.

After hearing about Charmaine’s debilitating condition, the compassionate doctor said he knew he had to help her.

He said: ‘When most doctors see a patient and it’s a complex situation, they just see high risk. I see the opposite of that, which is high impact. 

‘It’s an opportunity for me to have a huge impact on that patient’s life. I went into medicine to help people. 

‘Once I make a human connection with a patient, I don’t have a choice — I’m going to do the case.’

The father-of-two is director of The Osborne Head and Neck surgery and founded a charity which works to provide pro bono ENT surgical care to people worldwide.

He describes himself as someone who is ‘determined to make a difference in the world,’ with this being the reason why he trained to be a head and neck surgeon.

He’s a physician, he says, ‘but most of all he’s a man of the people, a visionary, and a person that never gives up on his dreams.’

Dr. Osborne has dedicated his adult life to serve others and help grow those around him. He’s built a private medical practice that provides specialty surgical care sought out by patients from around the world.

He leads yearly medical and impact missions around the world with the Dr Osborne Head and Neck Foundation, visiting countries in Africa and South and Central America, helping those who require life-changing surgeries.

He has now been featured on TLC’s Take My Tumor, helping mother-of-two Charmaine from Trinidad to start a new life free of the many tumors she is covered with.

Dr Osborne was able to remove dozens of tumors from her body – including several large ones on her face and ‘Frank’ in her mouth, as well as the extremely large tumor on her leg.

Over 10 weeks, he operated on Ms Sahadeo 24 times, for a total of 60 hours. 

Four weeks after her last surgery, back home in Trinidad, a grateful Charmaine said: ‘Life is 100 percent better for me.’

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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.

Despite all of her challenges, Ms Sahadeo’s sons Caleb and Osiris, who are in their 20s, said she never complains. 

Neither her they nor her granddaughter have shown signs of NF-1 neurofibromatosis, but the disease can occur at any point in a person’s life.

‘So far everything is going good and I keep praying for them,’ she said.  

The Trinidad native first began developing tumors when she was 13 years old, though they began smaller and less intrusive. She only had ‘a couple on my face,’ but now has ‘thousands’ across her body. 

Doctors in Ms Sahadeo’s home country have been unable to help as her condition has worsened.

In search of relief, Ms Sahadeo discovered Dr Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute.

Ms Sahadeo said: ‘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.

‘Doctors never said they were able to help or do anything before. Now that I finally have the opportunity and I have a doctor that is willing to help – I am willing to go all the way.

‘I’m putting my faith in this doctor because this is my last hope.’ 

‘Going all the way’ means flying nearly 4,000 miles to California to meet with Dr Osborne. 

And when the surgeon first heard of Ms Sahadeo’s case, he knew he had to help her.

Dr Osborne said: ‘When most doctors see a patient and it’s a complex situation, they just see high risk. I see the opposite of that, which is high impact. 

‘It’s an opportunity for me to have a huge impact on that patient’s life. I went into medicine to help people. 

‘Once I make a human connection with a patient, I don’t have a choice — I’m going to do the case.’

The oncologist has been in practice for more than two decades and said patients come to him from all over the world for his expertise and low complication rate. 

He described Ms Sahadeo’s case as ‘extensive’ and ‘unusual.’

The doctor 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.’

‘Her face and neck is basically tumor. And somewhere in there is Charmaine… we are really trying to sculpt her out of this tumor.

Because of how severe her neurofibromatosis is, Dr Osborne said she was ‘encroaching on some dangerous territory,’ adding it was ‘urgent right now that we intervene.’

However, to remove the thousands of tumors would be a complicated and long process, requiring multiple surgeries over more than two months. 

He explained to Ms Sahadeo that with each tumor he removes, he would also remove pieces of skin. Removing too much raises the risk of infection, so the procedures had to be done over multiple sessions.

How quickly such procedures can work depends on how much pain the patient can tolerate. 

Dr Osborne said: ‘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.’

Despite the pain, Ms Sahadeo was determined to undergo surgery. 

Dr Osborne told his patient: ‘I’ve never done this before…. We’re going to do this together, one step at a time. All I can tell you is that I’m going to be here with you the whole way through and whatever happens we’ll figure it out.’ 

Preparing for surgery, the medical team couldn't find a vein to infuse anesthesia through because of all the tumors.

Preparing for surgery, the medical team couldn't find a vein to infuse anesthesia through because of all the tumors.

Preparing for surgery, the medical team couldn’t find a vein to infuse anesthesia through because of all the tumors.

Ms Sahadeo underwent 60 hours of surgery in total and the doctor was able to remove hundreds of tumors

Ms Sahadeo underwent 60 hours of surgery in total and the doctor was able to remove hundreds of tumors

Ms Sahadeo underwent 60 hours of surgery in total and the doctor was able to remove hundreds of tumors

He added: ‘This is just a once in a lifetime opportunity to meet somebody who you have the potential of really impacting their life – and it’s scary because, just like the other doctors didn’t want to get involved because they’re just not sure that they can really make a big difference here, I’m not sure either. 

‘But I’m absolutely sure that I’m willing to try.’

In preparing for surgery, Ms Sahadeo’s medical team ran into a major roadblock: Her tumors were covering so much of her body, they couldn’t find a vein to infuse anesthesia through, meaning they wouldn’t be able to sedate her to operate. 

Opting to give local anesthetic, numbing just the affected area instead of sedation, Ms Sahadeo underwent 13 hours of surgery completely awake. 

Dr Osborne was able to remove 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 went on to operate on Ms Sahadeo 24 times, for a total of 60 hours. 

Four weeks after her last surgery, back home in Trinidad, Ms Sahadeo said: ‘Life is 100 percent better for me.’

Dr Osborne was able to remove more tumors than she expected, and she added: ‘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.’

Ms Sahadeo said she feels 98 percent better than she did before her procedures and she smiles more now. With the tumor removed from her leg, she can walk and is 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.’ 

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'

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'

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’

WHAT IS NF1 NEUROFIBROMATOSIS?

Neurofibromatosis type 1 (NF1) is a rare genetic condition that affects approximately one in 3,000 people across the world.

It is also known as von Recklinghausen’s disease and it occurs because of a mutation on a person’s NF-1 gene. 

This gene 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.

Most people with the disease live to a normal life expectancy.

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.

Neurofibromatosis is usually present at birth but it can develop at any age, with tumors growing at different rates.

Early symptoms include flat brown birthmarks and bumpy growths.

Cases can range from mild to severe with small sporadic tumors in various places on the body, to extreme cases where hundreds or thousands of growths appear across the body. 

Source: NIH; National Organization for Rare Disorders

Source: Mail Online

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